MWSA Bulletin Magazine Autumn 2022

MSWA Albany is open! | The value of acceptance in challenging times | NDIS support in an age of COVID | Pain and pain management series: Part 4

MSWA Albany is open! | The value of acceptance in challenging times | NDIS support in an age of COVID | Pain and pain management series: Part 4


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<strong>Autumn</strong> <strong>2022</strong><br />

mswa.org.au<br />

INSIDE<br />

/ MSWA Albany is open!<br />

/ The value of acceptance<br />

in challenging times<br />

/ NDIS support in an age of COVID<br />

MSWA Albany staff dancing the can-can<br />

on first seeing the completed interior of<br />

their new Services Centre!<br />

/ Pain and pain management<br />

series: Part 4



29 Parkhill Way 9365 4888<br />

Fax 9451 4453<br />

Freecall 1800 287 367<br />

See Health Team Dept contacts on this page<br />




Nicola Washington 9365 4840<br />


Carol Chong 9365 4873<br />

NDIS TEAM 9365 4824<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 />




Sue Shapland 6454 3174<br />


Senior Coordinator,<br />

Nelly Higginson 9385 9574<br />


Manager, Danuta Figurska 9356 2747<br />


Manager, Jo Nouwland 9331 5780<br />



Manager, Linda Kidd 9725 9209<br />



Manager, Chris Rush 6154 5120<br />



Manager, Kate Jones 6154 5085<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 />

MSWA, Locked Bag 2, Bentley DC WA 6983<br />

For general feedback or complaints please<br />

contact Davina Sawyer 6454 3173 or<br />

feedback@mswa.org.au<br />


Sue Shapland, Nicola Washington, Libby<br />

Cassidy, Jamey Claffey, Tracey Hockey and<br />

Nicolette Murphy.<br />


Geoff Hutchinson, Carol Chong,<br />

Dajana Tesevic, Vanishree Chetti,<br />

Denise Vogels, James Beckett,<br />

Misty Reinkowsky 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 MSWA’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 />



Our team provides treatment interventions to develop and maintain mobility<br />

and function.<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 />


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 />


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 />


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 />




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 />


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 />


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 />



MSWA 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 />



MSWA 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 />




Welcome to the autumn <strong>2022</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 />


FROM THE DESK OF THE CEO. ...... 4<br />



OPTIONS ........................... 5<br />


MEMBER & CLIENT SERVICES ....... 6<br />





RESEARCH ROUND UP. .......... 8-10<br />


AGE OF COVID. ..................... 11<br />

OT GROUPS <strong>2022</strong> ...................12<br />

SAVE THE DATE! ....................12<br />


OPENED ITS DOORS!. ...............13<br />


OTHERS IN THE FLU SEASON. ...... 14<br />

KIDS LEARNING ABOUT MS!. ........15<br />

EXERCISE AND PAIN. ............16-18<br />

A COOL PLACE. .....................19<br />

MARGARET’S STORY. ........... 20-21<br />


WILSON . .......................... 22<br />


PREVENTION PROGRAM. .......... 23<br />

VOLUNTEER UPDATE .............. 24<br />

CAMPS UPDATE . .................. 25<br />



BOOSTERS AND YOU. .............. 27<br />


CHALLENGING TIMES. ............. 28<br />


FEEDBACK & COMPLAINTS. ........ 29<br />


SERVICE AWARDS. ............. 30-31<br />



OF THE CEO<br />


CEO<br />

As I write this, it has now been two<br />

months since I started with MSWA,<br />

and I have enjoyed working with<br />

the team to face every challenge<br />

(usually COVID-19 related) and<br />

opportunity.<br />

My focus has been on reconnecting<br />

with core Purpose, our staff and<br />

our Clients, which I will continue to<br />

hold as my central goal. If we keep<br />

in touch with what people with<br />

neurological conditions want and<br />

need, we can only do a better job at<br />

meeting our Purpose and staying<br />

relevant to the people we set out<br />

to help when this organisation was<br />

established.<br />

COVID-19 has proved to be<br />

challenging for everyone in WA<br />

as our numbers continue to<br />

increase and I am very well aware<br />

of the stress this has placed on<br />

Clients, staff and their families. I<br />

cannot express my admiration and<br />

appreciation enough for the extent<br />

to which everyone has handled the<br />

uncertainty, the extra work involved<br />

and the reduction in staff levels. At<br />

this stage, thanks to the amazing<br />

planning of our leadership team and<br />

staff, we are managing to continue<br />

to support our Clients and haven’t<br />

had to invoke the ‘emergency<br />

workforce’ position.<br />

This may yet happen but at this<br />

stage we are managing to avoid<br />

this. We have also not had any<br />

significant outbreaks in any of our<br />

residential settings, but we have<br />

had to take precautionary shut<br />

down and isolation measures to<br />

avoid this. Again, thank you to those<br />

residents and staff for managing<br />

these situations so well – proactively<br />

and quickly.<br />

On the funding front, we are<br />

currently in market with our first<br />

Mega Home Lottery for <strong>2022</strong>. It is<br />

important to keep remembering<br />

that we do these to fund services<br />

that are currently not adequately<br />

provided or funded through<br />

government. This includes providing<br />

respite, outreach services, education<br />

and early intervention nurses who<br />

provide much-needed support, not<br />

to mention funding vital research.<br />

Having visited our Margaret Doody<br />

Respite House in City Beach, I saw<br />

firsthand what a wonderful relief<br />

it provides our Clients and their<br />

families.<br />

I did happen to lose a game of<br />

noughts and crosses to a crafty<br />

resident who had a better secret<br />

formula than me! I look forward<br />

to looking at our fundraising<br />

approach more broadly to see<br />

how we can both tap into new<br />

sources of funding, and focus and<br />

communicate more specifically on<br />

where we are investing the money<br />

and the benefit it delivers.<br />

Our focus on research<br />

continues and is a critical<br />

one, and I look forward<br />

to working more closely<br />

on a local, national and<br />

international basis to<br />

understand how best to<br />

target our research funding<br />

and how to translate that<br />

into better services for you<br />

our Clients, the people we<br />

exist to support.<br />

In summary, there are so many<br />

opportunities to extend our Purpose<br />

which is what motivates me and<br />

the team at MSWA. I look forward<br />

to sharing more of these over<br />

time and again thank you for your<br />

ongoing support for, and loyalty to,<br />

our Purpose.<br />









“Be the reason someone<br />

smiles today.”<br />

(I found this quote<br />

available as wall art!)<br />

It’s good advice, because not only<br />

will you be making someone feel<br />

good, you are actually conserving<br />

energy! Research shows it takes<br />

72 muscles to frown and only 14<br />

to smile. So, making people smile<br />

actually helps them conserve<br />

energy and makes you both feel<br />

good!<br />

These days we all need to find things<br />

to make us smile. There is so much<br />

happening, at home and overseas,<br />

which is ongoing and is certainly<br />

challenging our resolve, so it’s quite<br />

easy to become disillusioned or<br />

disheartened.<br />

Thankfully, we can still find lots to<br />

smile about here at MSWA. Our new<br />

CEO Melanie Kiely is on board and<br />

meeting with as many Clients and<br />

staff as she can, and her enthusiasm<br />

and positivity is contagious.<br />

Albany is open!! Our state-of-the-art<br />

Services Centre opened to Clients in<br />

February and the first residents will<br />

have started moving in when you<br />

receive this <strong>Bulletin</strong>. Kate Jones, the<br />

manager of the accommodation<br />

facility, is very positive, loves the<br />

facility and can’t wait to share it.<br />

COVID-19 and natural disaster<br />

related freight delays impacted<br />

the arrival of furniture and essential<br />

equipment, which was challenging<br />

but will soon be a memory.<br />

Amongst other things to smile<br />

about and celebrate is our 50th<br />

anniversary in <strong>2022</strong>! That’s epic,<br />

considering that in 1972 we started<br />

as a peer support group at a time<br />

when MS was hard to diagnose<br />

(no CT or MRI scans then) and<br />

there were no treatments. What a<br />

difference now, with 12+ treatments<br />

for MS. Our growth in available<br />

services, in Accommodation places,<br />

Services Centres and our ongoing<br />

funding of research are all things to<br />

celebrate.<br />

Moving in day at MSWA Albany<br />

MSWA has grown beyond<br />

our dreams and has,<br />

does, and will, continue to<br />

make a real difference in<br />

so many people’s lives.<br />

As we all continue to face the<br />

challenges of COVID-19 and other<br />

things we need to remember<br />

how important it is to take care of<br />

ourselves and to support each other.<br />

We need to show compassion and<br />

check in on each other. So try and<br />

make someone smile, it doesn’t<br />

cost anything but goes a long way.<br />


MEMBER &<br />





Welcome to the autumn<br />

edition of our Member &<br />

Client Services <strong>Bulletin</strong>.<br />

I hope you are all staying<br />

safe and well.<br />

I don’t think it is possible to start<br />

this article without the mention of<br />

COVID-19 and the impact we have<br />

seen with the Omicron variant since<br />

it entered WA in February <strong>2022</strong>.<br />

There is no doubt that WA is now<br />

well and truly fighting the war on<br />

COVID-19 – really, for the first time<br />

since the start of the pandemic. It is<br />

fair to say we have been lucky to get<br />

this far without the outbreaks seen<br />

over east and overseas, but that<br />

time has passed, and we are now<br />

living with the pandemic in WA and<br />

working on keeping everyone safe.<br />

Our COVID-19 taskforce at MSWA<br />

have been proactive and we are<br />

well prepared with clear procedures<br />

and processes in place to ensure<br />

that we follow the Government<br />

guidelines to manage the delivery<br />

of services. As we see more positive<br />

cases and an increase in isolation<br />

for close contacts, there will be<br />

some disruption to services, but our<br />

priority remains the safety of our<br />

Clients and employees.<br />

Please continue to notify us if<br />

you have any symptoms, are a<br />

close contact, or test positive for<br />

COVID-19, we can then work with<br />

you to ensure we deliver your<br />

services safely.<br />

On the NDIS front, Geoff Hutchinson<br />

has provided an article on page 11<br />

regarding NDIS support through<br />

the COVID-19 period, which provides<br />

some useful insights on funded<br />

supports.<br />

As the number of participants<br />

grows nationally, with now over<br />

500,000 people receiving funding,<br />

the latest federal budget update for<br />

<strong>2022</strong>-23 estimates the expenditure<br />

on the NDIS will be larger than<br />

what is spent on Medicare Benefits,<br />

with the projection for <strong>2022</strong>-23 to<br />

be $35.7 billion ($5 billion more<br />

than Medicare) with an expected<br />

increase to $46 billion for 2025-26.<br />

For more information on the NDIS<br />

and latest news and discussion you<br />

can visit nds.org.au.<br />

I am pleased introduce our<br />

fourth instalment in the Pain<br />

Management series titled ‘Exercise<br />

and Pain’ which can be found on<br />

page 16. Another excellent article<br />

in this series with great information<br />

regarding managing pain, which I<br />

hope you will find useful.<br />

We have also been busy with our<br />

education workshops. We held our<br />

Children’s MS Workshop in January,<br />

which is designed to help children<br />

gain an understanding of the<br />

issues faced by their parent/family<br />

member living with MS. It is a great<br />

program that helps to educate<br />

and inform children in a fun and<br />

informative way.<br />

We have a number of monthly<br />

workshops planned through May,<br />

and monthly support groups<br />

that run at various locations and<br />

also online. Further information<br />

on these workshops and events<br />

can be found on our website<br />

mswa.org.au/support-services/<br />

programs-workshops-events.<br />

Lastly, the exciting news is that<br />

we are finally in our brand new<br />

Services Centre in Albany. The<br />

team are so excited. We have<br />

started our Physiotherapy services<br />

and Outreach has opened.<br />

Accommodation is coming very<br />

soon and we are getting ready to<br />

welcome our new residents.<br />

We will be having an official<br />

opening once everything settles in,<br />

ready to launch our new services to<br />

the Great Southern community.<br />

As always, your feedback is<br />

important to us so if you have<br />

anything you would like to<br />

share please contact us on<br />

feedback@mswa.org.au.<br />

Stay safe.<br />






The Motor Interventions in Neurological Conditions (MINC) trials are funded by MSWA in<br />

partnership with Edith Cowan University.<br />

Dr Onno van der Groen is leading<br />

the MINC trials at ECU which utilise<br />

modern gaming technology and<br />

an exoskeleton called ‘Mindpod’<br />

to improve health outcomes for<br />

individuals living with neurological<br />

conditions. The MINC trials are part<br />

of a broader Research Program<br />

SPIN (Systematic Profiling in<br />

Neurological Conditions) which<br />

was founded at ECU in 2019 and<br />

has been generously supported by<br />

MSWA since its inception.<br />

Dr van der Groen is a Research Fellow<br />

in the School of Medical and Health<br />

Sciences at ECU, investigating<br />

recovery in neurological conditions<br />

with a focus on motor recovery. His<br />

contributions to research include<br />

emerging technologies of noninvasive<br />

brain stimulation and<br />

rehabilitation robotics.<br />

The Mindpod system uses motion<br />

capture and a digital gaming<br />

system designed to deliver<br />

therapeutic treatments for Western<br />

Australians with upper limb<br />

impairments – a common symptom<br />

for people living with a neurological<br />

condition. The first of its kind in<br />

Australia, the Mindpod could lead<br />

to new opportunities for restoring<br />

and improving upper limb function<br />

for individuals with restricted<br />

arm movement. Besides this, the<br />

Mindpod is now tested in people<br />

with MS to assess if it can improve<br />

quality-of-life.<br />

“The Mindpod motion capture<br />

and gaming system enables fun<br />

exploration and practice using<br />

whole arm-hand movements<br />

to guide a dolphin in a gaming<br />

environment. This immersive<br />

and engaging technology is an<br />

innovative tool for intense training,”<br />

says Dr van der Groen.<br />

A spring-operated exoskeleton suit<br />

provides different levels of antigravity<br />

support, making it easier<br />

for people to move their arms. Data<br />

suggests the arm can move up<br />

to one mile in every session, and<br />

repeated sessions are associated<br />

with coordinated movement<br />

improvement.<br />

A Mindpod system has recently<br />

been installed at the MSWA Wilson<br />

Services Centre to serve a wider<br />

group.<br />

The results of this research project<br />

will hopefully demonstrate the<br />

positive benefits and translate into<br />

a recognised therapy for Clients in<br />

the future.<br />




ROUND UP<br />





Read more at: mstrust.org.uk<br />

Recovery from COVID-19 in multiple<br />

sclerosis: a prospective and<br />

longitudinal cohort study of the<br />

United Kingdom Multiple Sclerosis<br />

Register; Garjani A, Middleton<br />

RM, Nicholas R, Evangelou N.<br />

Neurology Neuroimmunology and<br />

Neuroinflammation <strong>2022</strong>; 9: e1118.<br />

Most people with MS who develop<br />

COVID-19 have mild to moderate<br />

symptoms and will not develop<br />

serious complications which require<br />

hospital care. However, they may<br />

still experience long-term effects of<br />

COVID-19. This study was designed<br />

to find out how well people with<br />

MS recover from mild to moderate<br />

COVID-19 and the factors that<br />

influence recovery.<br />

7,977 people with MS took part<br />

in the UK MS Register COVID-19<br />

study. People who reported having<br />

COVID-19 were invited to complete<br />

fortnightly questionnaires until<br />

they considered themselves fully<br />

recovered. The questionnaire asked<br />

which symptoms of COVID-19 they<br />

were still experiencing.<br />

Background details about each<br />

participant, previously provided are<br />

held as part of the Register, including<br />

age, gender, type of MS, levels of<br />

disability and mental health status.<br />

The association between COVID-19<br />

recovery and these background<br />

details was analysed to find factors<br />

that might influence recovery.<br />

Results: 1096 participants reported<br />

having COVID-19 and of these, 599<br />

provided regular updates of their<br />

recovery. 28 participants (4.7%) were<br />

hospitalised due to their COVID-19<br />

infection and were excluded from<br />

the final analysis of 571 people.<br />

77.8% reported full recovery from<br />

COVID-19 within the study period.<br />

The average recovery time was 10<br />

days. At least 165 participants (29.7%)<br />

had COVID-19 symptoms which<br />

lasted for more than 4 weeks and 69<br />

(12.4%) for more than 12 weeks.<br />

Participants with pre-COVID-19 selfassessed<br />

EDSS scores greater than 7<br />

(unable to walk more than 5 metres<br />

with walking aid), participants with<br />

probable anxiety and/or depression<br />

before COVID-19, and women<br />

were more likely to report delayed<br />

recovery.<br />

Other MS-related factors such<br />

as disease duration or disease<br />

modifying therapies did not appear<br />

to influence recovery from COVID-19.<br />

More than 80% of participants with<br />

persistent COVID-19 symptoms had<br />

symptoms that were not typical for<br />

MS, such as breathing difficulties,<br />

sore throat, stomach ache and<br />

diarrhoea.<br />

The good news is that most people<br />

with MS who developed COVID-19<br />

recovered within an average of<br />

10 days. About 30% experienced<br />

COVID-19 symptoms for more than<br />

4 weeks and about 12% for more<br />

than 12 weeks. People with higher<br />

disability, mental health problems,<br />

and women were more likely to<br />

experience persistent symptoms.<br />

The authors suggest the results<br />

will provide useful information to<br />

tailor post-COVID-19 rehabilitation.<br />

The results also highlight the<br />

importance of vaccination against<br />

COVID-19 in those who are most<br />

vulnerable to long-term effects of<br />

infection.<br />







Read more at: researchreview.com.au<br />

Hydroxychloroquine for primary<br />

progressive multiple sclerosis;<br />

Marcus W. Koch MD, PhD.<br />

Primary progressive multiple<br />

sclerosis (PPMS) does not respond<br />

well to immunomodulatory or<br />

immunosuppressive treatment.<br />

Chronic activation of microglia<br />

has been implicated in the<br />

pathophysiology of PPMS. The<br />

antimalarial drug hydroxychloroquine<br />

(HCQ) reduces the activity of human<br />

microglia and has neuroprotective<br />

effects in vitro.<br />

A single-arm, phase II futility trial<br />

of oral HCQ given twice daily for<br />

18 months. In an effort to investigate<br />

disability worsening in the absence<br />

of overt focal inflammation, we<br />

excluded participants with contrast<br />

enhancing lesions on a screening<br />

MRI. The primary end point was<br />

≥20% worsening on the timed 25-<br />

foot walk measured between 6 and<br />

18 months of follow-up.<br />

Results: Based on original trial data,<br />

40% of the cohort were expected<br />

to worsen. The study met its<br />

primary end point, as only 8 of 35<br />

participants worsened between<br />

6 and 18 months. HCQ was overall<br />

well-tolerated, with adverse events<br />

in 82% and serious adverse events<br />

in 12% of participants. All serious<br />

adverse events were unlikely related<br />

to HCQ use.<br />

Interpretation: HCQ treatment was<br />

associated with reduced disability<br />

worsening in people with PPMS.<br />

HCQ is a promising treatment<br />

candidate in PPMS and should be<br />

investigated further in randomized<br />

controlled clinical trials.<br />


Read more at: neurology.org<br />

Global differences in risk factors,<br />

etiology, and outcome of<br />

ischemic stroke in young adults<br />

– a worldwide meta-analysis; The<br />

GOAL Initiative. Mina A. Jacob et al.<br />

There is a worldwide increase in the<br />

incidence of stroke in young adults,<br />

with major regional and ethnic<br />

differences.<br />

A pooled analysis of patient data<br />

from cohort studies, including<br />

consecutive patients with ischemic<br />

stroke aged 18–50 years was<br />

undertaken. The researchers<br />

studied differences in prevalence<br />

of risk factors and causes of ischemic<br />

stroke between different ethnic<br />

and racial groups, geographic<br />

regions, and countries with different<br />

income levels. We investigated<br />

differences in 3-month mortality<br />

by mixed-effects multivariable<br />

logistic regression.<br />

Results 17,663 patients from 32<br />

cohorts in 29 countries were<br />

reviewed. Hypertension and diabetes<br />

were most prevalent in Black<br />

(hypertension, 52.1%; diabetes, 20.7%)<br />

and Asian patients (hypertension<br />

46.1%, diabetes, 20.9%). Large vessel<br />

atherosclerosis and small vessel<br />

disease were more often the cause<br />

of stroke in high-income countries<br />

(HICs), whereas “other determined<br />

stroke” and “undetermined stroke”<br />

were higher in low and middleincome<br />

countries (LMICs).<br />

Patients in LMICs were younger,<br />

had less vascular risk factors, and<br />

despite this, more often died within<br />

3 months than those from HICs<br />

(odds ratio 2.49; 95% confidence<br />

interval 1.42–4.36).<br />

The results also highlight the<br />

dissimilarities in outcome after stroke<br />

in young adults that exist between<br />

LMICs and HICs, which should serve<br />

as a call to action to improve health<br />

care facilities in LMICs.<br />





Read more at: springer.com/<br />

journal/10072<br />

Early implementation of intended<br />

exercise improves quality of life in<br />

Parkinson’s disease patients; Yang<br />

Yang et al.<br />

Recent data has shown that<br />

regular exercise may ameliorate<br />

motor symptoms in Parkinson’s<br />

disease (PD). This study aims to<br />

investigate how intended exercise<br />

impacts motor and non-movement<br />

symptoms of PD.<br />

Eighty-eight patients were<br />

randomly assigned to an early<br />

exercise group (E-EG), late exercise<br />

group (L-EG), or a control group<br />

(CG) using a randomized delayedstart<br />

design. The E-EG carried out a<br />

rigorous, formal exercise program for<br />

1 hour, twice per week, for 18 months<br />

(May 2018–November 2019). The L-EG<br />

took part in the exercise program in<br />

the final 6–12 months of the study.<br />

The researchers assessed outcomes<br />

using a range of assessment tools<br />

and questionnaires.<br />

Conclusion: Implementation of<br />

an exercise regimen improved the<br />

movement abilities and quality<br />

of life in PD patients, especially in<br />

the E-EG. This data supports the<br />

idea that intended exercise should<br />

be implemented as part of the<br />

treatment strategy for PD patients<br />

as early as possible.<br />


Read more at: florey.edu.au<br />

A new drug delays motor neurone<br />

disease progression and improves<br />

cognitive and clinical symptoms<br />

according to recently announced<br />

trial results.<br />

Motor neurone disease is a<br />

progressive, fatal neurodegenerative<br />

disease. Its key hallmark is the<br />

death of the brain cells that control<br />

muscle movements. This results in<br />

muscle weakness and eventually<br />

paralysis. Patients usually die of<br />

respiratory failure within three<br />

years of diagnosis, and there are no<br />

treatments or disease-modifying<br />

therapies available.<br />

A new drug developed by<br />

scientists at the Florey Institute of<br />

Neuroscience, and the School of<br />

Chemistry and Bio21 Institute at<br />

the University of Melbourne has<br />

dramatically improved clinical<br />

and cognitive symptoms of motor<br />

neurone disease, also called<br />

amyotrophic lateral sclerosis.<br />

The drug CuATSM slowed overall<br />

deterioration in MND patients over<br />

six months. Improvements were<br />

seen in lung function and cognition<br />

in some patients. Decline in motor<br />

disability was reduced in treated<br />

patients compared to standard-ofcare<br />

patients<br />

In this dose-finding trial involving<br />

32 patients, the group given the<br />

highest amount of the CuATSM<br />

compound showed improved<br />

lung function and cognitive ability,<br />

compared to the predicted declines<br />

observed in standard-of-care<br />

patients. Treated patients showed<br />

a much slower overall disease<br />

progression as measured by a<br />

global disability score.<br />

The clinical trial was led by Professor<br />

Dominic Rowe at Macquarie<br />

University, and Associate Professor<br />

Susan Mathers at Calvary Health<br />

Care Bethlehem.<br />

This is the first human evidence for<br />

a disease-modifying drug for motor<br />

neurone disease. It is a significant<br />

step forward, and we look forward<br />

to confirming the positive results in<br />

a larger study soon.<br />

The trial is currently being extended<br />

to examine the longer-term results.<br />

Researchers will begin a larger<br />

Phase 2 trial to confirm CuATSM’s<br />

effectiveness in motor neurone<br />

disease.<br />





If you have caught the evening news or read the papers recently you may have heard of the<br />

little COVID-19 pandemic that Perth and, for that matter, the whole world has been dealing<br />

with for much of the past two years.<br />

While Perth avoided much of<br />

the impact for the last couple of<br />

years, the recent border opening<br />

and the sub-variant of Omicron<br />

have brought the pandemic to<br />

our doorstep. While I (and I am<br />

sure you) hope that we can return<br />

to some level of normalcy sooner<br />

rather than later, I thought it an<br />

opportune time to outline some of<br />

the available support for those on<br />

NDIS plans.<br />

COVID-19 brought significant<br />

disruption to the way many disability<br />

support services were offered. For<br />

example, many services providers<br />

rapidly pivoted to the delivery of<br />

care remotely via telehealth to<br />

facilitate continuity of care. While<br />

MSWA has maintained much of<br />

our face-to-face services we have<br />

increased the number of telehealth<br />

services being undertaken and<br />

have embraced technology to assist<br />

with this service delivery. To assist<br />

this change the NDIS introduced<br />

a flexible approach to purchasing<br />

low-cost assistive technology (AT)<br />

from their funding. This flexible<br />

approach allows participants to<br />

spend up to $1,500 on AT items,<br />

such as smart devices and fitness<br />

equipment, in consultation with<br />

their existing support providers.<br />

As with anything NDIS, there is a<br />

laundry list of requirements, but I<br />

suggest talking to your Local Area<br />

Coordinator, Support Coordinator<br />

or Client Liaison Coordinator to help<br />

access this support.<br />

Another change has been the<br />

increase in the use of Rapid Antigen<br />

Tests (RATs) to quickly determine an<br />

individual's COVID-19 status. Once<br />

again, the NDIS has supported<br />

these changes by allowing eligible<br />

participants to purchase RATs<br />

with NDIS plan funding via their<br />

core budget. The core supports<br />

budget is flexible and can be used<br />

temporarily to cover the cost of<br />

RATs. Additionally, you may be<br />

eligible to receive free RATs from<br />

participating pharmacies if you<br />

hold a Commonwealth Seniors<br />

Health Card, Health Care Card, Low<br />

Income Health Care Card, Pensioner<br />

Concession Card or a Department<br />

of Veterans Affairs Card. Once again<br />

it's best to discuss this with your<br />

Support Coordinator or Local Area<br />

Coordinator as to the best way to<br />

access this funding.<br />

While RATs provide a level of comfort,<br />

at times you may need to complete<br />

a Polymerase Chain Reaction (PCR)<br />

test. While testing centres have<br />

been set up around the state, it may<br />

be difficult due to your condition, to<br />

get to one of these centres and wait<br />

in line for a test. Luckily, COVID-19<br />

testing in the home is now available<br />

for people with disability. This is<br />

organised through your General<br />

Practitioner (GP) by requesting that<br />

a staff member from the relevant<br />

pathology group visits your home.<br />

While the above supports are great,<br />

the one cause for caution is what<br />

will be the lasting impact on NDIS<br />

plan values. While each person’s<br />

plan should be reviewed on their<br />

support related needs, the NDIS<br />

states on their COVID-19 webpage<br />

that ‘your funding may change in<br />

your next plan’. While this is perfectly<br />

ambiguous, it is important that you<br />

note any significant disruption to<br />

your service delivery due to isolation<br />

or COVID-19 precautions at your<br />

next plan review meeting.<br />

From our standpoint, MSWA is<br />

working hard to ensure we are<br />

prepared for the longer-term realities<br />

of COVID-19. This includes closely<br />

monitoring Government and Health<br />

Department advice and regulations<br />

to ensure that our services follow<br />

safety guidelines and directions.<br />

These precautions may change as<br />

guidelines are updated, however,<br />

will always focus on continuing as<br />

many services as possible.<br />

With the latest COVID-19<br />

requirements changing almost<br />

weekly it is important to understand<br />

how these changes may impact<br />

your NDIS plan. The best source of<br />

information for the NDIS’s response<br />

to the pandemic is available through<br />

ndis.gov.au/coronavirus.<br />

I hope the above information has<br />

been useful and that you and your<br />

family stay safe.<br />






OT GROUPS <strong>2022</strong> –<br />


The Occupational Therapy team is looking to start running groups again. We would love to<br />

run groups based on topics that you would find helpful in increasing your quality of life.<br />




Do you often experience fatigue<br />

and are unsure how to cope with it?<br />

Do you find that fatigue stops you<br />

from doing what you enjoy?<br />

Fatigue is a common symptom in<br />

people with neurological conditions<br />

and other chronic health conditions.<br />

It is a hidden symptom that can be<br />

misunderstood by those around us<br />

because it cannot be seen physically.<br />

Join us for an interactive session<br />

with an Occupational Therapist to<br />

learn about the basics of fatigue,<br />

what causes fatigue for you, the<br />

importance of good planning and<br />

rest, examining your priorities and<br />

using your energy well.<br />

Assistive Technology is an umbrella<br />

term used for any device or system<br />

that allows individuals to perform<br />

tasks that they would otherwise be<br />

unable to do. In the world of NDIS,<br />

The Cognition Workshop is a four<br />

week course that helps you to<br />

understand what cognition looks<br />

like in your life, and strategies for<br />

how to improve your attention,<br />

Assistive Technology can be funded memory and information<br />

in different ways. Come along to processing skills. This is an<br />

this session to uncover the world<br />

of AT and how equipment can help<br />

you in your independence journey.<br />

opportunity to share experiences,<br />

learn from others and personalise<br />

your management strategies with<br />

advice and strategies provided by<br />

the group facilitators.<br />

If any of the above groups interest you, or you have<br />

suggestions for other topics, please contact the OT team<br />

at ot.referrals@mswa.org.au to register your interest!<br />

THE MSWA<br />


will take place on<br />

Tuesday, 5 July <strong>2022</strong><br />

More information<br />

to come…<br />




Our new Services Centre.<br />

Our new $7m Albany development is now complete, with an official opening planned to<br />

take place in coming months.<br />

Clients in the Great Southern have<br />

been enjoying the new stateof-the-art<br />

Services Centre for a<br />

few months now, and the adjoining<br />

High-Support Accommodation<br />

welcomed its first residents in<br />

early April.<br />

Albany Outreach Coordinator,<br />

Caroline Clarke-Smith, describes<br />

what it was like to walk in the front<br />

door: “It was awesome to see the<br />

centre for the first time. We were<br />

overwhelmed! It’s finally here! It’s<br />

unbelievably huge!”<br />

Reception area<br />

This unique development was<br />

made possible by the generosity of<br />

MSWA’s community of supporters.<br />

Funds raised have directly helped us<br />

to expand our footprint in the Great<br />

Southern, increasing our capacity to<br />

support regional people living with<br />

neurological conditions.<br />

A bedroom and bathroom in one of our new High Support<br />

Accommodation units<br />





Don’t forget your flu shot! The Health Department states that influenza (the flu) is a very<br />

contagious infection of the airways and affects people of all ages. Although it can be a mild<br />

disease, it can also cause very serious illness in otherwise healthy people. It can require<br />

hospitalisation and can cause death.<br />

Vaccination is a safe and effective Our medical advisor Professor<br />

way to protect you from serious<br />

disease caused by influenza.<br />

Bill Carroll offers the following<br />

comment for people with MS:<br />

Early influenza vaccination is "There is no evidence that these<br />

recommended for people aged vaccinations make MS worse<br />

six months and over. Anyone or cause a relapse. Should a<br />

who wants to protect themselves<br />

against influenza can talk to their<br />

relapse occur around the time<br />

of flu vaccination it is thought<br />

immunisation provider about to be coincidental. Occasionally<br />

getting vaccinated.<br />

people with MS can have a brief<br />

exacerbation of existing MS<br />

Our MSWA Clients often ask if<br />

symptoms, due to vaccination<br />

whether they should have the<br />

associated fever or fatigue, but this<br />

vaccination, especially relating to<br />

is not worsening of the MS.<br />

MS and some of the medications<br />

they take.<br />

The Government funded Health Direct<br />

(healthdirect.gov.au/colds-and-flu-treatments)<br />

is packed with health information and advice.<br />

You can call a Health Direct RN 24/7<br />

for free advice: 1800 022 222.<br />

People with MS are advised to<br />

discuss any concerns with their<br />

treating neurologist or physician as<br />

soon as possible as it is essential to<br />

have the vaccination earlier rather<br />

than later to reduce the risk of<br />

contracting the flu".<br />

People with neurological or other<br />

chronic conditions are advised to<br />

discuss their concerns with their<br />

treating neurologist or GP as soon<br />

as possible; it is essential to have the<br />

vaccination earlier rather than later<br />

to reduce the risk of contracting the<br />

flu during the riskier winter months.<br />

Getting vaccinated helps protect<br />

both you and those around you. It’s<br />

particularly important to protect<br />

vulnerable people in the community<br />

who can’t be vaccinated, such<br />

as babies who are younger than<br />

six months and adults with<br />

low immunity.<br />





In January the MSWA Children’s MS Education Workshop made a welcome return at<br />

the Rossmoyne Community Hall during the school holidays. The workshop had a wonderful<br />

turnout, with six children, five parents, and five MSWA staff from the Nursing and<br />

Counselling teams.<br />

The workshop is designed for<br />

families with children aged 6-12<br />

years and a parent/significant family<br />

member living with MS. Our aim<br />

is to communicate science in an<br />

engaging, fun way and to give young<br />

people a better understanding of<br />

issues faced by their parent/family<br />

member living with MS.<br />

We started the day with some<br />

fun interactive games and an<br />

opportunity for the kids and<br />

parents to get to know one another.<br />

The workshop ran for three hours<br />

and had five interactive stations.<br />

One family took part in the activity<br />

at each station and then rotated<br />

until they had taken part in the<br />

activity at each station. Topics<br />

covered included information<br />

about vitamin D, the impact of MS<br />

on vision, walking, and bladder, and<br />

treatments for MS. The workshops<br />

were developed in the UK by<br />

Digesting Science in 2013 by the<br />

Barts MS Research team.<br />





What did parents say about taking part in the January workshops?<br />

“It gave me the opportunity to open dialogue with my kids about MS at their level.”<br />

“The event was great for my kids, they really enjoyed the excellent resources.”<br />

“The resources were amazing, and I would 100% recommend this for other families, particularly those that<br />

may have sheltered their kid from their diagnosis.”<br />

“We all gained a lot of clarity around MS.”<br />

What did children say about taking part in the workshops?<br />

“I learned all the different ways MS affects people.” (7 years old)<br />

“This will help me understand when my dad needs a rest.” (9 years old)<br />

Interested in coming along to the next workshop?<br />

Register your expression of interest with Dajana at Dajana.Tesevic@mswa.org.au or 0429 267 970.<br />



Welcome to the fourth instalment in our series of articles on pain and pain management.<br />

Below, Neurological Liaison Nurse Bronwyn Innes, who has a speciality background in<br />

pain management, explores exercise and pain – with input from James Beckett, MSWA<br />

Physiotherapy Manager, and Vanishree Chetti, MSWA Nurse Manager.<br />

If you would like to read the previous articles in our Pain & Pain Management series, all<br />

previous editions of <strong>Bulletin</strong> can be viewed online at publications.mswa.org.au<br />


Chronic pain is a complex experience which is influenced by physical, psychological, and<br />

social factors. The best way to manage it is by addressing all the factors affecting your pain.<br />

It is important to keep a positive attitude until you find a mix that works for you.<br />

For many years, the treatment<br />

choice for chronic pain included<br />

recommendations for rest and<br />

inactivity. However, exercise may<br />

have specific benefits in reducing<br />

the severity of chronic pain, as well<br />

as more general benefits associated<br />

with improved overall physical<br />

and mental health, and physical<br />

functioning.<br />

Chronic musculoskeletal pain refers<br />

to ongoing pain felt in the bones,<br />

joints and tissues of the body that<br />

persists longer than three months.<br />

Examples include:<br />

/ Hip and back pain caused by<br />

alteration in gait, muscle stiffness<br />

or weakness, or problems with<br />

balance.<br />

/ Back pain due to sitting for<br />

long periods, fatigue, walking<br />

difficulty, or inability to stand<br />

for long.<br />

/ Muscle or joint pain due to<br />

posture changes, spasms, or<br />

muscle stiffness.<br />

/ Pain related to osteoarthritis.<br />


Lack of activity or exercise due to<br />

pain or other symptoms can cause<br />

a gradual loss of strength and<br />

fitness. Deconditioning can worsen<br />

your pain but improves with regular<br />

exercise, which also helps ease your<br />

pain. Less vigorous forms of exercise<br />

include gentle stretching exercises,<br />

tai chi, yoga, Pilates, walking,<br />

chair exercises, aquatic exercises,<br />

exercise bike classes or gym work.<br />

It is important to find something<br />

enjoyable which helps rather than<br />

aggravates your pain.<br />

It is also important to work together<br />

with a physiotherapist to develop<br />

an exercise program with the<br />

purpose of:<br />

/ Reversing the effects of inactivity<br />

on your body.<br />

/ Maximising your daily function<br />

and independence.<br />

/ Helping you achieve your physical<br />

goals.<br />

/ Helping you feel better and more<br />

confident about yourself.<br />


Exercise interventions are the<br />

cornerstone of management for<br />

musculoskeletal pain conditions,<br />

with the benefits being wellestablished.<br />

Expecting exercise to get rid of<br />

chronic pain is generally unrealistic<br />

and the usefulness of exercise<br />

should not only be measured<br />

purely in terms of pain relief.<br />


Water based exercise is particularly<br />

helpful if you have arthritis or<br />

a musculoskeletal condition.<br />

Because your body is supported,<br />

the resistance provided by moving<br />

through water builds muscle<br />

strength and endurance.<br />

Types of water exercise include:<br />

/ Hydrotherapy – a type of<br />

exercise therapy offered by<br />

physiotherapists as one-on-one<br />

sessions for individuals or in<br />

small groups. Exercises are more<br />

specific for your condition, injury,<br />

or situation.<br />

/ Gentle water exercise classes –<br />

some fitness or recreation centres<br />

offer gentle water exercise<br />

programs suitable for older adults<br />

or people with health conditions<br />

such as arthritis. All participants<br />

follow the same general exercises<br />

in a fun, group environment.<br />

/ Swimming or even walking laps<br />

at your local pool can also be of<br />

benefit.<br />

TAI CHI<br />

There’s good evidence to support<br />

the effectiveness of tai chi for<br />

people with arthritis and other<br />

musculoskeletal conditions. There<br />

are many styles of tai chi, and most<br />

are suitable for people with arthritis.<br />

Tai chi benefits:<br />

/ Can be practiced by people of all<br />

ages and fitness levels.<br />

/ Promotes correct body posture<br />

and balance.<br />

/ Is a low impact exercise.<br />

/ Can help relieve joint pain and<br />

stiffness.<br />

/ Integrates the body and mind.<br />

/ Uses gentle and circular<br />

movements.<br />

/ It’s relaxing and enjoyable.<br />



The aim of pacing is to maintain an<br />

even level of activity over the day as<br />

compared to for example, doing as<br />

much as possible in the morning<br />

and then resting in the afternoon.<br />

There are three main aspects to<br />

pacing:<br />

1. Take frequent, short breaks.<br />

2. Gradually increase the amount<br />

you do.<br />

3. Break up tasks into smaller<br />

segments.<br />

The three aspects of pacing can be<br />

applied separately but they often<br />

overlap. They can be applied to both<br />

exercises and daily activities such as<br />

sitting, standing, and walking.<br />

Pacing will help slowly increase the<br />

time spent doing activities without<br />

overdoing things and helps with<br />

fewer flareups of pain.<br />

Your allied health professional will<br />

be able to help you set some goals<br />

and make a plan if you are prone to<br />

overdoing things and consequently<br />

are unable to function for some<br />

time afterwards.<br />


Maintaining a healthy weight can<br />

improve symptoms of chronic<br />

pain, particularly for people<br />

with osteoarthritis and other<br />

musculoskeletal or joint pain.<br />

Weight loss can be achieved by<br />

modifying your diet and reducing<br />

daily intake of saturated fats and<br />

sugars. Daily low-impact exercise<br />

will also help.<br />

A dietician or your GP can help you<br />

to develop a weight-loss plan.<br />


Some people experience pain relief<br />

from massage or treatments that<br />

stimulate the nervous system.<br />

These include acupuncture or using<br />

a TENS (Transcutaneous Electrical<br />

Nerve Stimulator).<br />

Massage<br />

Massage is a hands-on therapy that<br />

involves rubbing and manipulating<br />

the soft tissues of your body,<br />

especially your muscles. Massage<br />

can improve blood circulation, ease<br />

muscle tension, and help you feel<br />

more relaxed.<br />

A massage is not only useful for<br />

helping you deal with your physical<br />

pain, it also helps relieve stress and<br />

helps you get to sleep.<br />

You can give yourself a massage or<br />

you can see a qualified therapist.<br />

You can even ask a family member<br />

or good friend to give you a gentle<br />

massage.<br />



While it’s not possible to massage all<br />

parts of your body, you can still relieve<br />

many of your own muscular aches<br />

and tension. You may even find<br />

that you do it unconsciously – when<br />

you’re sitting at the computer and<br />

you rub your neck, when you have<br />

a headache and you gently rub your<br />

temples, or when you’re applying a<br />

heat rub to your sore knee.<br />

TENS<br />

Transcutaneous electrical nerve<br />

stimulation (TENS) is a therapy that<br />

uses low voltage electrical current<br />

to provide pain relief. A TENS unit<br />

consists of a battery-powered device<br />

that delivers electrical impulses<br />

through electrodes placed on the<br />

surface of your skin. The electrodes<br />

are placed at or near nerves where<br />

the pain is located or at trigger points.<br />

There are two theories about how<br />

transcutaneous electrical nerve<br />

stimulation (TENS) works. One<br />

theory is that the electric current<br />

stimulates nerve cells that block<br />

the transmission of pain signals,<br />

modifying your perception of pain.<br />

The other theory is that nerve<br />

stimulation raises the level of<br />

endorphins, which are the body’s<br />

natural pain-killing chemical.<br />

The endorphins then block the<br />

perception of pain.<br />

TENS therapy has been used, or<br />

is being studied, to relieve both<br />

chronic (long lasting) and acute<br />

(short-term) pain.<br />

Some of the most common<br />

conditions for which TENS has been<br />

used include:<br />

/ Osteoarthritis (disease of the<br />

joints)<br />

/ Fibromyalgia (aching and pain in<br />

muscles, tendons, and joints all<br />

over the body, especially along<br />

the spine)<br />

/ Tendinitis (an inflammation or<br />

irritation of a tendon)<br />

/ Bursitis (inflammation of the fluidfilled<br />

sacs that cushion joints)<br />

/ Labour pain<br />

/ Lower back pain<br />

/ Chronic pelvic pain<br />

TENS helps ease pain for some<br />

people, but not for others.<br />

TENS is thought to be safe. But it<br />

should not be used:<br />

/ on an open wound<br />

/ if your skin is irritated<br />

/ near sensitive areas such as your<br />

eyes<br />

/ while driving or operating<br />

machinery<br />

/ in or around water<br />

It should not be used by:<br />

/ women who are pregnant but<br />

not in labour<br />

/ people with a pacemaker or a<br />

cochlear implant<br />

/ people with epilepsy<br />

If you think you would like to<br />

try TENS, you should discuss<br />

with a physiotherapist or health<br />

professional for advice on whether<br />

it may be suitable for your problem.<br />


In conclusion, there are many types<br />

of exercise which can be utilised<br />

by individuals of all abilities to help<br />

gain strength, flexibility, and aid in<br />

reducing the severity of chronic<br />

pain, as well as more general<br />

benefits associated with improved<br />

overall physical and mental health,<br />

and physical functioning.<br />

And in the very wise words of a<br />

pain mentor of mine…<br />











/ TENS: healthdirect.gov.au/tens<br />

/ Manage your Pain by Dr Michael Nicholas, et al. (available on Amazon)<br />

/ Pain Australia: painaustraila.org.au<br />

/ MS Australia: msaustralia.org.au<br />

/ Massage and musculoskeletal conditions: msk.org.au/massage<br />

/ Exercise and musculoskeletal conditions: msk.org.au/exercise<br />

/ ‘Musculoskeletal pain and exercise—challenging existing paradigms and introducing new’, Benjamin E<br />

Smith, et al, British Journal of Sports Medicine: bjsm.bmj.com/content/53/14/907<br />

/ ‘Physical activity and exercise for chronic pain in adults: an overview of Cochrane Reviews’, Louise J Geenan,<br />

et al, The Cochrane database of systematic reviews: ncbi.nlm.nih.gov/pmc/articles/PMC5461882/<br />

Want to enquire about our Physiotherapy services? Send your enquiries to physio@mswa.org.au<br />





I recently visited Albany. Many people associate Albany with rain, but actually the statistics<br />

show that on average Perth has more days of rain than Albany. It was such a relief to spend<br />

a few days in a cooler climate after Perth’s excessively hot summer.<br />

We all know how the hot weather<br />

can affect people with MS. Albany<br />

is also ‘cool’ in another sense. It<br />

has some groovy cafés, and not<br />

too far out of town there are many<br />

wineries worth visiting. There is also<br />

a modern entertainment centre<br />

that has all sorts of ‘cool’ events,<br />

certainly worth checking out.<br />

I drove down to Albany with my<br />

sister in my car, so I could do<br />

some of the driving. It was a bit of<br />

a challenge on the way working<br />

out which places had toilets that<br />

were wheelchair accessible. We<br />

discovered that The Woolshed in<br />

Williams has a very good accessible<br />

toilet which is higher, as wheelchair<br />

toilets should be, and has grab rails<br />

on both sides of the toilet making<br />

it easy to get on and off. Mount<br />

Barker and Kojonup also have good<br />

accessible toilets.<br />

One of my sisters has a holiday villa<br />

in Albany near the beach. I stayed<br />

with her. She has very kindly put<br />

grab rails in her bathroom, a shower<br />

chair, and a bed rail to make her villa<br />

comfortable for me. The weather<br />

was cool but pleasant while I<br />

was there.<br />

It was lovely to be able to pull<br />

a quilt up to my neck at night<br />

and enjoy the warmth. It’s<br />

been a while since I’ve done<br />

that in Perth.<br />

One evening we went for a ‘walk’<br />

(my sister and brother-in-law took<br />

turns to push my wheelchair) along<br />

the path near the beach. We also<br />

went to Ocean and Paddock for fish<br />

and chips. This cafe was voted WA’s<br />

best fish and chip shop in 2017, 2018,<br />

and 2019. It was very enjoyable.<br />

Another day we went to a winery for<br />

lunch. As my nephew’s wife works<br />

there, she was able to recommend<br />

good food and wine. The winery<br />

was a bit out of Albany and had a<br />

beautiful view overlooking some<br />

farmland and a river. It brought back<br />

memories of my early childhood<br />

growing up on a farm halfway<br />

between Albany and Mount Barker.<br />

The food was fantastic.<br />

It is many years since I was a<br />

schoolgirl in Albany. On this visit<br />

whenever I saw someone who<br />

looked roughly my age, I wondered<br />

if I had been at school with them.<br />

The trouble is we have all changed<br />

in appearance.<br />

Many of these people had grey<br />

hair and had put on weight, so it<br />

was difficult to recognise them<br />

from school days when we were<br />

all skinny and had colourful hair.<br />

Albany has also changed since my<br />

school days. It is quite sophisticated<br />

now and has lots to offer.<br />

While I was in Albany I contacted<br />

Kate, the manager of the new MSWA<br />

residential facility that has recently<br />

opened. She showed us around<br />

the facility and I was impressed<br />

with it. I noticed a picnic area being<br />

erected in a park over the road and<br />

I suggested that Kate speak to the<br />

council about making it wheelchair<br />

accessible. It is so important that<br />

people living in facilities have<br />

somewhere to enjoy the outdoors<br />

and to take their guests.<br />

Albany is a cool place, with a cool<br />

climate, cool cafes and wineries,<br />

and cool events. And soon it will<br />

have a cool new MSWA Services<br />

Centre and residential facility. How<br />

cool is that!<br />




Margaret and Brett -<br />

Cable family gathering<br />

at Whiteman Park<br />

“I used to donate, and I’d always buy a lottery ticket from MSWA,” recalls Margaret Cable.<br />

“Little did I know that I would need their support one day.”<br />

Margaret was diagnosed with MS<br />

two years ago, at the age of 59. But<br />

her journey with MS began over 15<br />

years ago, when she first noticed<br />

a weakness in her right arm when<br />

raking the garden. Unfortunately,<br />

over the next decade, despite<br />

worsening mobility on her right<br />

side, visits to the GP and a specialist<br />

never amounted to a referral for<br />

an MRI.<br />

It wasn’t until Margaret booked in<br />

to see a podiatrist for her walking<br />

difficulties that multiple sclerosis<br />

was first suspected. “I hadn’t even<br />

sat down and the podiatrist said,<br />

‘Margaret you need an MRI to<br />

find out what your neurological<br />

problem is’.”<br />

The podiatrist wrote a letter to her<br />

GP and Margaret immediately went<br />

next door to her doctor’s surgery<br />

to get the referral for an MRI. The<br />

test showed lesions and – after<br />

some COVID-19 related delays –<br />

Margaret received an appointment<br />

at the Perron Institute and, at last,<br />

a diagnosis.<br />


Margaret was born in Africa and has<br />

lived in England and Switzerland.<br />

After falling in love with a handsome<br />

truck driver from WA, Margaret<br />

moved to the small town of Toodyay.<br />

She and Brett have been married<br />

for 20 years.<br />

For many years, Margaret worked<br />

in stores for Bucher Municipal.<br />

“They make bin trucks,” explains<br />

Margaret. “I was this little tiny lady<br />

working with the huge items –<br />

300 kg cylinders, paddles and the<br />

large pieces of metal that make up<br />

a truck.”<br />

All the while, she was experiencing<br />

undiagnosed neurological issues.<br />

“I used to get by with a forklift.<br />

And my colleagues were very<br />

accommodating. They would help<br />

me out with certain tasks, and they<br />

never asked why I couldn’t manage<br />

something.”<br />

In 2013, the parent company made<br />

the Toodyay storeman position<br />

redundant, and Margaret was let<br />

go. “So it never got to the stage<br />

where I was let go because of my<br />

MS,” she explains.<br />

Finding a new job proved difficult.<br />

“I was looking for work, so I’d go for<br />

a medical and they’d turn me down.<br />

But at the same time, the doctors<br />

didn’t ever find anything wrong<br />

with me. It really knocked me down.<br />

I felt like people thought I was lazy<br />

or just faking it. So when it was<br />

labelled ‘MS’ it was like this huge<br />

burden was lifted off me. Finally,<br />

somebody understood!<br />

“Now I had a reason that explained<br />

why I couldn’t take the heat any<br />

more, why I couldn’t work any more.<br />

“When your arm and leg don’t work,<br />

it’s hard, and when people label you<br />

as lazy, that’s even harder.”<br />


At her assessment at the Perron<br />

Institute, Margaret was supported<br />

by one of the MSWA Neurological<br />

Liaison Nurses who work in<br />

conjunction with Perron. “That’s<br />

how I found out about how MSWA<br />

could help me,” she explains.<br />

Shortly after, the NDIS sent<br />

Margaret some paperwork. “This<br />

was all instigated by Perron and the<br />

MSWA Nurse.”<br />


Through her NDIS funding, Margaret<br />

receives Support Coordination,<br />

Occupational Therapy and Speech<br />

Pathology from MSWA. “I saw<br />

an MSWA Counsellor when I was<br />

first diagnosed. I don’t need help<br />

with that side of things yet, but it’s<br />

good to know they’re just a phone<br />

call away.”<br />


Margaret’s MSWA Speech<br />

Pathologist travelled to Toodyay<br />

to do the initial assessment, but<br />

since then Margaret has been<br />

dialling in to fortnightly telehealth<br />

appointments. “It makes far more<br />

sense. Otherwise, Clare is having<br />

to take three hours out of her day<br />

to get to Toodyay, and I’m getting<br />

billed for that time too.”<br />

“We use phone, Zoom, or WhatsApp<br />

– the choice is countless these days<br />

isn’t it! There’s no difference than if<br />

we were in a room together. It works<br />

just fine. There’s no disadvantage to<br />

it except that I can’t offer to make<br />

Clare a coffee!”<br />

The education Margaret has<br />

received from her Speech<br />

Pathologist has made a big<br />

difference to her everyday life.<br />

“Before I had my assessment, I didn’t<br />

know what speech pathology was!<br />

It’s not just about talking. It’s about<br />

swallowing too, and it’s about how<br />

your brain sends signals. Looking<br />

back over the years, I was often<br />

choking or coughing on things. I<br />

didn’t realise that’s classic MS.<br />

“Some techniques are so simple<br />

– like how to position my head<br />

when I swallow. And understanding<br />

what foods are problematic for me.<br />

Anything that has a solid and a<br />

liquid – like cereal – is tricky for an<br />

MS brain to process. The milk goes<br />

down the wrong way.<br />

Margaret and dog Smudge -<br />

2 years prior to diagnosis<br />

“It’s also been explained to me why<br />

I stop middle-sentence: it’s because<br />

a neural pathway has died and my<br />

brain needs to find a way around<br />

the roadblock.”<br />


Looking to the future, Margaret<br />

says she trying to embrace life at a<br />

slower pace.<br />

“There’s a frustration when you<br />

can’t do something. It’s irritating<br />

to think of what I can’t do now. I<br />

can’t take my dog for a good walk,<br />

and I feel guilty about that. It’s sad<br />

thinking of the things I wanted<br />

to do. I wanted to dive with the<br />

whale sharks. I wanted to go the<br />

Machu Picchu.<br />

“But it’s nice being here in Toodyay.<br />

I have people around me who lift<br />

me up. They still expect me to be<br />

me, just with a few limitations.<br />

“I’ve scaled back my hobbies over<br />

the years. I love crafting. I make<br />

cards, but even that’s getting hard<br />

now. I can’t squeeze glue or push<br />

down on a scalpel, but there are die<br />

cut shapes you can use now, which<br />

make it much easier.”<br />

Margaret enjoys going to a cardmaking<br />

class on Wednesdays, and<br />

staying for a coffee afterwards.<br />

Being a truck driver, Brett is away<br />

for 12 days at a time. Margaret has<br />

domestic support from a few local<br />

people, but when Brett is home he<br />

is there by her side. “When I was<br />

diagnosed, Brett wanted to leave<br />

work to be my full-time carer, but<br />

then we would have no means for<br />

paying the mortgage and bills. He is<br />

always happy to help, even when he<br />

has just got home from a long trip.<br />

“I try to absorb the positive attitude<br />

of everyone around me.”<br />




Some photo highlights from MSWA Wilson Outreach over the last quarter.<br />

Pancakes on Shrove Tuesday<br />

Chair dancing with Lisa<br />

Pancakes on Shrove Tuesday<br />

Pigeons visiting<br />

St Patrick’s Day<br />



If you would like to opt-out of receiving a paper copy of this publication,<br />

please contact communications@mswa.org.au to sign up to the e-magazine.<br />





The MS Falls Prevention Program is a 6-week exercise and education program pioneered by<br />

Sheila Lennon, Emeritus Professor of Physiotherapy from Flinders University, and adapted<br />

for MSWA.<br />

It has been demonstrated that<br />

participants who engaged with<br />

the program showed meaningful<br />

improvements in their balance,<br />

walking distance and number<br />

of falls.<br />

The distinguishing feature that<br />

makes this program unique is the<br />

emphasis on taking ownership of<br />

one’s condition. Instead of merely<br />

performing exercises, participants<br />

engage with educational<br />

discussions and presentations<br />

about the nature of falls, why they<br />

occur and how to best manage<br />

them. They are then encouraged to<br />

perform an honest self-assessment<br />

of what their functional abilities are,<br />

and to take the necessary steps and<br />

efforts to improve.<br />

The ultimate goal of the program<br />

is to empower the participant<br />

with the knowledge and mindset<br />

to continue managing their falls<br />

risk long after graduating from<br />

the course.<br />

Using our newly acquired<br />

Physitrack® application, MSWA<br />

Clients receive an interactive<br />

home exercise program with video<br />

demonstrations and illustrations of<br />

all exercises, and a way of recording<br />

their progress which can be<br />

monitored by our clinicians.<br />

Our Physiotherapy team is now<br />

running this program across a<br />

variety of locations.<br />

To register your interest or to<br />

find out more please contact<br />

physio@mswa.org.au.<br />




“I’ve almost completed the Falls Prevention Program at MSWA Butler.<br />

It’s helped me with balance, giving me the tools to balance on one leg,<br />

and to think about distractions and think about my environment. I’m<br />

enjoying the workshops, there’s a good bunch of people who go. We<br />

were timed doing certain exercises and they’ll compare the results at<br />

the end of the six weeks.”<br />






According to the Australian Bureau of Statistics (ABS) 2019 General Social Survey (GSS),<br />

almost one-third (29%) of Australians participated in voluntary work through an organisation<br />

or group, contributing anywhere from 21 to over 100 hours in the previous 12 months.<br />

At MSWA, our volunteers are a<br />

valuable asset, contributing an<br />

average of just over 90 hours per<br />

volunteer in 2021. About 15 volunteers<br />

put in more than 100 hours and<br />

four contributed over 200 hours last<br />

year alone. We have just under a<br />

third of our volunteers supporting<br />

us in the Outreach Centres, with the<br />

remaining making contributions<br />

across various facilities and offices.<br />

We are very grateful that most<br />

of our volunteers serve in their<br />

position for months, years and<br />

some, even decades. To all of<br />

you, we say ‘Thank you!’<br />

There are a number of volunteer<br />

positions available at various<br />

locations. If any of these positions<br />

interest you, please call me (via the<br />

details below) to find out more.<br />

It’s okay to try a few different roles<br />

before finding one you want to<br />

settle in to.<br />

The most popular position is the<br />

Activities Assistant. The role involves<br />

socialising with, and supporting,<br />

Clients with their individual interests<br />

and activities and assisting staff<br />

with the delivery of planned activity<br />

programs in our Outreach Centres<br />

or in respite or Accommodation.<br />

At present, we are looking for<br />

Activities Assistants at Beechboro,<br />

City Beach, and Butler. If you<br />

know of anyone who would like to<br />

contribute some time performing<br />

these roles, we’d love to speak<br />

with them.<br />

Contact: 6454 3184, Email:<br />

Mala.Padmanathan@mswa.org.au<br />





Looking for a change? Do any of these volunteer<br />

roles interest you? Know anyone who may be<br />

interested in trying something new?<br />

We are currently looking for volunteers to fill the<br />

following positions:<br />

Kitchen Assistant (Beechboro)<br />

Monday and/or Friday, 5 hours a week<br />

Activity Assistant<br />

(2 positions: Beechboro, City Beach, and Butler)<br />

Flexible days, 2-3 hours a week<br />

Gardener (City Beach Respite)<br />

Flexible days, 2-4 hours a fortnight<br />

Document Delivery (multiple positions: Wilson)<br />

Flexible days, 6 hours a week<br />

Administration Assistant (Vasse)}<br />

Tuesday and Thursday, 9am-2pm<br />

Judith Bodger (Volunteer Activities Assistant - Arts<br />

and Craft) with Esserina Clinton (MSWA Client) at<br />

Wilson Outreach.<br />

Administration Assistant (Mandurah)<br />

Flexible days: 3 hours a month<br />

Contact Mala Padmanathan, Volunteer & Camp<br />

Coordinator, to discuss your options.<br />

Phone: 6454 3184 or 0487 530 240<br />

Email: Mala.Padmanathan@mswa.org.au<br />



In the last <strong>Bulletin</strong>, we mentioned that our Lotterywest supported Camps program was back<br />

on track with our first Clients and Carers camps scheduled for March and April this year.<br />

Unfortunately, the spread of<br />

Omicron and then the opening of<br />

the WA borders on 3 March resulted<br />

in a rapid escalation of COVID-19<br />

case numbers in the community.<br />

Due to further concerns related to<br />

the spread of COVID-19 and with<br />

additional measures to reduce the<br />

risk of spread, this led to a review<br />

of our plans and processes, and we<br />

had to make the difficult decision<br />

of cancelling all camps in the<br />

first half of <strong>2022</strong> to minimise the<br />

window of exposure for our MSWA<br />

community – vulnerable Clients,<br />

carers, and staff alike.<br />

We are sorry that this decision had<br />

to be made and we understand the<br />

disappointment this would have<br />

caused for our Clients and carers<br />

and apologise for any inconvenience<br />

caused. But, as always, we put the<br />

safety of our Clients, families and<br />

staff first.<br />

We hope the camps planned for<br />

the second half of <strong>2022</strong> will proceed<br />

and we are very excited to get the<br />

program back up and running.<br />

We’re looking forward to seeing<br />

everyone come together to enjoy<br />

these great events.<br />

We are monitoring the<br />

situation and will continue<br />

to follow the guidelines from<br />

the State Government and<br />

WA Health Department.<br />

Camp activities will be<br />

advertised through our<br />

Outreach centres and<br />

upcoming editions of <strong>Bulletin</strong>.<br />

I will also make direct contact with<br />

those who have expressed interest in<br />

participating in a camp. If you have<br />

any queries regarding camps, please<br />

contact me on 6454 3184 or email<br />

Mala.Padmanathan@mswa.org.au.<br />











We are inherently social beings, and we are biologically, cognitively, spiritually, and physically<br />

wired to love and be loved. Significant research evidence shows that meaningful contact<br />

with other people and being part of a community can help significantly with our physical<br />

and emotional wellbeing.<br />

Why is it important and what are<br />

the benefits?<br />

Major lifestyle changes and personal<br />

losses associated with illness and<br />

the recent pandemic have had<br />

significant effects on our sense of<br />

belonging. During these difficult<br />

times in our lives, we have a natural<br />

impulse to reach out to others for<br />

support. Allowing ourselves to be<br />

vulnerable with people we trust,<br />

we form much stronger and deeper<br />

relationships. Social connection<br />

reduces loneliness while providing<br />

a sense of belonging.<br />

Individuals who feel more<br />

connected to others have lower<br />

levels of anxiety and depression.<br />

Connection is also linked to higher<br />

self-esteem and self-worth and can<br />

help boost our immune system.<br />

So how can someone find<br />

connection?<br />

In today’s world, we live such busy<br />

lives and for some of us, social<br />

connection can fall by the wayside.<br />

Prioritising time for social<br />

connection, making an active<br />

choice to spend time with people<br />

who make you feel supported<br />

and loved. Our need for human<br />

connection does not mean that<br />

we all need to be social butterflies.<br />

Having connection can look<br />

different for everyone, what matters<br />

is that it has meaning for you.<br />

Connecting through technology<br />

can be beneficial by allowing us<br />

to stay in touch with family and<br />

friends more easily. However,<br />

technology should be enhancing<br />

our connection to others, not<br />

replacing it. Human contact and<br />

interaction are much more valuable<br />

and cannot be replaced.<br />

Volunteering, being part of<br />

something bigger than yourself.<br />

We get a much greater sense of<br />

connection when we are helping<br />

others in the community, it also<br />

gives us meaning and purpose.<br />

Animals are a great bridge to<br />

forming connection, meet up with<br />

others who walk their dog in your<br />

neighbourhood.<br />

Peer groups are a great way to find<br />

connection with individuals who<br />

can relate to what you are going<br />

through. Accessing counselling<br />

can further help with building on<br />

existing relationship skills, it can<br />

help improve your communication<br />

and emotional connectedness.<br />

When we talk about connecting,<br />

we usually think of connecting with<br />

other people. However, there are<br />

other ways of being in touch and<br />

connected that are also important;<br />

connecting with self and having<br />

quiet moments, connecting with<br />

nature, animals or with God or one’s<br />

spiritual needs.<br />

Regardless of how you choose<br />

to connect, it is important to<br />

remember that you are not alone.<br />

This is a rare time in history that<br />

people all around the world<br />

from different cultures, languages<br />

and social economic groups<br />

are experiencing the same<br />

thing together.<br />



COVID-19<br />



AND YOU<br />


This information is general in nature. You should always seek advice from your GP and/or<br />

neurologist, who know you well and can answer any specific questions or concerns about<br />

COVID-19 vaccinations and boosters, as well as any specific treatments you are receiving and<br />

any timing recommendations.<br />

Primary course of vaccination and<br />

boosters: What does that mean?<br />

As mentioned in the last <strong>Bulletin</strong>,<br />

for some people – those who<br />

are immunocompromised –<br />

the primary course of COVID-19<br />

vaccinations should be three doses.<br />

In addition, a booster has also been<br />

recommended.<br />

Now, the Government and Health<br />

Department have recommended<br />

a second booster for vulnerable<br />

groups as we come into the<br />

winter months. This provides<br />

more adequate protection against<br />

COVID-19, and especially the<br />

Omicron variant.<br />

You should book an appointment to WA: COVID-19 vaccination, including<br />

have another booster dose as soon the booster, is now mandatory in<br />

as possible before or during winter WA for most sectors and workplaces<br />

if it has been four months since your but especially the health, aged care<br />

first booster dose and you fit into and disability sectors. Restrictions<br />

one of the below categories:<br />

are also in place now for those who<br />

are unvaccinated unless they have a<br />

/ 65 years or older<br />

legitimate exemption.<br />

/ a resident of an aged care or<br />

disability care facility<br />

/ severely immunocompromised<br />

/ Aboriginal or Torres Strait Islander<br />

and aged 50 years and older.<br />

For information and updates, go to the Health Department<br />

websites in WA, and the Federal site, as these are updated daily<br />

and provide vaccination advice and information and links for how<br />

to book your vaccination:<br />

healthywa.wa.gov.au<br />

health.gov.au<br />

or call the COVID helpline on 1800 020 080 –<br />

open 24 hours, 7 days a week.<br />

Health Direct have a handy COVID-19 restriction checker<br />

healthdirect.gov.au/covid19-restriction-checker -<br />

just select your state and the type of setting.<br />





Ideas around the value and usefulness of acceptance are very old and emerged from a variety<br />

of cultures in the ancient past, but are equally applicable today.<br />

Many people confuse acceptance<br />

with giving up or being passive.<br />

This is understandable. However,<br />

acceptance may not be seen in<br />

this way at all. Rather it can be<br />

seen as an active, intentional and<br />

courageous way to move on, despite<br />

the challenges in our lives.<br />

Acceptance does not mean that we<br />

like, agree, concede, forget, fail to<br />

see or ignore something. Instead,<br />

it means that we understand<br />

the difference between what we<br />

control and what we do not. Then,<br />

instead of focusing on what cannot<br />

be changed, we instead focus on<br />

what can. This invites attention<br />

away from others and external<br />

events, and back to ourselves – it<br />

shifts us away from being helpless<br />

or victimised into having choice<br />

and agency, even though this may<br />

be limited. Acceptance is an act<br />

of resistance.<br />

Another way to see this is to<br />

understand how suffering can be<br />

created or increased by resisting<br />

the present reality. When suffering<br />

is already present in this reality,<br />

then this is multiplied when we<br />

resist and cannot accept. Trying<br />

to change what we cannot control<br />

often brings only more pain. Not<br />

being able to let go can chain us<br />

to the past and hold us back from<br />

the present which is the only place<br />

where we can make a difference.<br />

For example, we are seeing pain<br />

and struggles in so many places<br />

around us these days – in personal<br />

challenges, COVID-19, and events<br />

abroad. If we focus and attach to<br />

these issues, we may feel angry,<br />

depressed, and anxious, in our own<br />

lives and relationships. Then the<br />

other problems remain, but now<br />

there is a problem in our lives and<br />

for others that may care about us.<br />

However, if we can find acceptance,<br />

bring our focus back to ourselves,<br />

those we love, and OUR living, then<br />

we can be become more resilient,<br />

take better care of ourselves and<br />

others, remain engaged, and bring<br />

what good we can. In this way we<br />

make a difference, bring positivity,<br />

follow our values, and resist the<br />

suffering in this world.<br />

Research has also shown<br />

that acceptance is a crucial<br />

part of mental health, while<br />

its counterparts, avoidance<br />

and attachment (trying to<br />

avoid negative thoughts and<br />

feelings, focusing on them, or<br />

grasping after only the ‘good’<br />

stuff) is implicated in almost<br />

all mental health issues.<br />






Do you have a story about living with a neurological condition in WA that other MSWA Clients<br />

might like to read? We invite you to share your experiences with our many <strong>Bulletin</strong> readers.<br />

Email your submission to bulletin@mswa.org.au for consideration by the Editorial<br />

Working Group.<br />



We want to hear from you. Your feedback helps us to understand what is working well and<br />

where we can improve.<br />

You can raise a concern or<br />

acknowledge the supports an MSWA<br />

staff member has provided by:<br />

/ Talking to the coordinator of<br />

your services<br />

/ Telephoning the Complaints<br />

Liaison and Compliance<br />

Coordinator, Davina Sawyer,<br />

on 6454 3146<br />

/ Emailing<br />

feedback@mswa.org.au<br />

/ Writing to Quality and<br />

Compliance; Locked Bag 2,<br />

BENTLEY DC 6983<br />

Please tell us:<br />

/ What happened<br />

/ When it happened<br />

/ Who was involved<br />

/ What you would like to see<br />

occur as a result of sharing your<br />

feedback<br />

All feedback is reviewed, and<br />

complaints investigated in a timely<br />

manner with the team responsible<br />

for the service.<br />

Our goal is to achieve a positive<br />

outcome for all people involved<br />

and improve the quality of the care<br />

and services provided. You will be<br />

included in the process and the<br />

outcomes shared with you.<br />

Please note, you have the right to<br />

have support from an advocate at<br />

any point in a complaint process.<br />

The Complaints Liaison and<br />

Compliance Coordinator can help<br />

you to access an advocacy service<br />

if you wish.<br />




On 15 March <strong>2022</strong>, Melanie Kiely (MSWA<br />

CEO) and Ros Harman (MSWA President)<br />

presented staff members with Length of<br />

Service awards to recognise their 10, 15 or 25<br />

years with MSWA.<br />

Congratulations to these team members<br />

and thank you for your years of Service.<br />

Linda Kidd,<br />

Manager Supported Accommodation & Respite<br />

Treendale Gardens (15 Years)<br />


Jacqueline Dinsey,<br />

Care Support Worker<br />

(25 Years)<br />

Denise Vogels,<br />

Community Team Leader<br />

North (10 Years)<br />

Susan Rowe,<br />

Recreation & Domestic Support Worker<br />

Treendale (10 Years)<br />

Simone Foxley,<br />

Roster Coordinator<br />

(10 Years)<br />

Susan Barker,<br />

Community Support Worker<br />

Treendale (25 Years)<br />

Nimisha Baird,<br />

Senior Neurological Nurse<br />

(10 Years)<br />





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