MSWA Bulletin Magazine Autumn 18

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THE OFFICIAL MAGAZINE OF <strong>MSWA</strong> mswa.org.au<br />

AUTUMN 20<strong>18</strong><br />

<strong>MSWA</strong> Members’ Nicolette Murphy and Kate Gild<br />

with <strong>MSWA</strong> CEO, Marcus Stafford, at the construction<br />

of the new <strong>MSWA</strong> Supported Accommodation and<br />

Services Facility in Butler.<br />






NURSING Our MS nurses are usually the first point of contact after the neurologist’s<br />

diagnosis of MS. We’re committed to providing holistic supports; providing a greater<br />

understanding of what to expect.<br />

Lou Hatter, Manager: 9365 4888 or Community Nurse: 9365 4888<br />


29 Parkhill Way (08) 9365 4888<br />

Fax (08) 9451 4453<br />

Freecall <strong>18</strong>00 287 367<br />

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




Sue Shapland: 9365 4840<br />


Manager Community<br />

Care Programs 9365 4851<br />

NDIS TEAM 9365 4824<br />


Wilson Outreach (Mon-Thurs): 9365 4830<br />

Beechboro Lodge (Mon, Fri): 9377 7800<br />

Southside Outreach (Fri): 9592 9202<br />

Albany Outreach (Fri): 9841 6657<br />


1 Mason Street, Davenport 6454 2800<br />


1/21 Cammilleri Street 9754 2320<br />


Manager, Chris Rush: 9385 9574<br />


Manager, Danuta Figurska: 9356 2747<br />


Manager, Jayne O’Sullivan: 9331 5780<br />



50 The Boulevard, Australind<br />

Manager, Linda Kidd: 9725 9209<br />


If you would like to comment<br />

on anything you read in this<br />

<strong>Bulletin</strong> please email<br />

bulletin@mswa.org.au<br />

or write to<br />

<strong>MSWA</strong>, Locked Bag 2,<br />

Bentley DC WA 6983<br />

The <strong>Bulletin</strong> can also be viewed at<br />

mswa.org.au/bulletin<br />


Greg Brotherson (Editor), Marcus Stafford (CEO),<br />

Paul Cavanagh, Sue Shapland, Ros Harman,<br />

Libby Cassidy, Caitlin Skinner, Sandra Wallace,<br />

Narelle Taylor, Leonie Wellington,<br />

Sarah Lorrimar, and Dawn Burke.<br />

The Editor welcomes unsolicited submissions.<br />

All articles are subject to a reviewing process.<br />

The views expressed are those of the Authors<br />

and do not necessarily reflect the view of<br />

<strong>MSWA</strong>’s staff, advisors, Directors or officers.<br />

PHYSIOTHERAPY Our team aims to provide treatment interventions to develop and<br />

maintain mobility and function. Our Physiotherapists are experts in movement and function,<br />

and work in partnership with you to attain the highest possible level of independence.<br />

Dave Hathorn, Manager: 9365 4837 or Physiotherapy Department: 9365 4834<br />

OCCUPATIONAL THERAPY Occupational Therapists enable Members, and Clients,<br />

to continue their work and other interests for as long as possible through advice, aids<br />

and equipment.<br />

Rosemarie Dravnieks, Manager: 9365 4804 or OT Department: 9365 4888<br />

SPEECH PATHOLOGY Our Speech Pathologists provide support by assessing,<br />

diagnosing and creating individualised treatment programs for Members who experience<br />

swallowing and/or communication difficulties. We equip Members with information and<br />

strategies to promote better communication and safe swallowing.<br />

Jamaica Grantis, Manager: 6454 3140<br />


Talking with a Counsellor creates a safe, respectful and confidential environment for you<br />

and those close to you to explore options, create change or gain understanding about your<br />

life. Attending counselling with our tertiary qualified practitioners enables opportunity<br />

for personal growth and exploration in a non-judgemental environment. We have a Peer<br />

Support & Health Education Coordinator who organises peer connection & events and<br />

supports health and wellness education services. She can be contacted on 9365 4858.<br />

To make an appointment please call:<br />

Lisa Papas, Manager: 9365 4836 or Main Counselling line: 9365 4811<br />

SOCIAL WELFARE Social Welfare Officers assist people living with MS and their<br />

families to access services and supports to remain living independently at home.<br />

They specialise in case management, advocacy and sourcing funding options.<br />

They provide information on benefits and entitlements through Centrelink and other<br />

government departments. Monitor NDIS/WANDIS Services.<br />

Irene Gallagher, Manager, Social Work: 9365 4835<br />

INDIVIDUAL OPTIONS We provide long-term and time limited in-home supports<br />

including assistance with personal care for people with MS, to help them remain in their<br />

homes. Care and supports are provided through a combination of funding from the<br />

Disability Services, Department of Communities and our own fundraising efforts.<br />

We manage both DSC and NDIS individually funded care packages.<br />

Contact Aileen Ward, Manager on 9365 4851 for more information.<br />

THE NDIS TEAM We can help answer all NDIS questions.<br />

Our experienced team can help determine whether you may be eligible for NDIS support<br />

and assist you with your application. This includes developing an individual plan that<br />

best suits your needs. We support people with all neurological conditions including<br />

MS, Stroke, Parkinson’s Disease, Huntington’s Disease, Acquired Brain Injury and<br />

Motor Neurone Disease, to name a few.<br />

Contact Mark Douglas, NDIS Operations Manager: 9365 4824<br />

CAMPS & RECREATION <strong>MSWA</strong> provides separate recreation camps for Members,<br />

carers, and families, primarily funded by Lotterywest, and for a nominal cost to participants.<br />

These camps provide a break from daily routines, and strengthen friendships and<br />

support networks.<br />

Coordinator for Camps & Recreation: 9365 4843<br />

2 | <strong>MSWA</strong> BULLETIN AUTUMN 20<strong>18</strong>



On behalf of the Editorial Team, welcome to your first <strong>MSWA</strong><br />

<strong>Bulletin</strong> for 20<strong>18</strong>.<br />

Besides the usual fireworks and festivities, this New Year<br />

celebration also turned out to be something very special<br />

indeed when the heavens put on a rare and majestic display<br />

with an eclipse of a stunning super blue blood moon. It was a<br />

spectacle that captured the imagination.<br />

By chance, I was giving my wife some respite and had moved<br />

to <strong>MSWA</strong>’s respite home in Treendale, situated adjacent to the<br />

Leschenault Inlet, Bunbury. It is a beautiful setting.<br />

The area to the east is entirely flat and ready for development;<br />

for the time being it is uncluttered by an encroaching suburbia.<br />

It was a lovely warm evening, a crystal-clear night, with a<br />

super moon making her entrance from the east over an<br />

unblemished horizon.<br />

The stage is set, my acquaintance for the performance about<br />

to get underway is another resident, Janet, who has Motor<br />

Neurone Disease (MND), and communicates by iPad with<br />

a text-to-speech application. We paid due reverence to the<br />

unknown conductor, raised the seats on our powerchairs<br />

to the height limit, inclined the seats and waited for what<br />

astronomers said would be a “mind-bending performance.”<br />

That was to prove a gross understatement.<br />

Captured by the wonder of it all, there was adequate time<br />

for inner contemplation as Earth’s shadow glided across the<br />

moon, blocking out the light from the sun. When the shadow<br />

completely engulfed the moon, the beautiful colour of totality<br />

formed, producing a blood-red Moon to ponder over.<br />

The principles of celestial mechanics did not cause Janet and<br />

me to spend hours watching the heavens in quiet contemplation<br />

and amazement. Having a neurological disease, such as MND<br />

and MS, can cause amenable people to think of the meaning<br />

of life, the mysterious, and enjoy this cosmic experience which<br />

stimulates the intellect, in a religious sense.<br />

continued over<br />

INSIDE | AUTUMN 20<strong>18</strong><br />










MY WIFE HAS MS 13<br />





THE NDIS AND ME <strong>18</strong><br />

NDIS UPDATE 19<br />











20<strong>18</strong> EVENTS CALENDER 27<br />

<strong>MSWA</strong> BULLETIN AUTUMN 20<strong>18</strong> | 3

Janet was a year seven school teacher before her diagnosis<br />

in 2011, and her ability to verbalise was her first loss. Janet<br />

is doing well by what can be expected and makes every post<br />

a winner.<br />

After my diagnosis in 1979 and requalifying as an Historian<br />

in 1983, I spent the next 32 years teaching at Murdoch<br />

University, and it seems to me that the most important<br />

function of teaching art and science is to arouse and keep<br />

alive this feeling of a cosmic experience in those people who<br />

are receptive. It was ‘high-fives’ after the moon emerged to<br />

continue on her cosmic journey, so I’m sure Janet agrees.<br />

Do people with a chronical neurological illness acquire a<br />

new insightfulness? I believe we do. Even with these nasty<br />

neurological pieces of work attacking our bodies we are<br />

continually trying to heal ourselves. Thankfully we are not<br />

alone as we look for ways to patch things up, revitalise our<br />

spirits and prepare our minds for the challenges our condition<br />

will impose upon us.<br />

In this issue of your <strong>Bulletin</strong>, Marcus discusses the NDIS,<br />

the construction of the new Butler facility, and the staff long<br />

service awards.<br />

Sue Shapland talks about ‘change’, the renovations taking<br />

place at <strong>MSWA</strong>, and why. There are several new Outreach<br />

centres being established, and more planned with funds set<br />

aside in the forward estimates. Sue’s concentrated Roundup<br />

of MS Research follows. Sue has also found time to review<br />

Maggie Beer’s latest book of recipes for dietary changes<br />

that have the potential to help ward off chronic conditions<br />

and Alzheimer’s.<br />

Everyone needs a little help, and in this issue, Sarah Lorrimar,<br />

Coordinator of Health Education and Peer Support, has<br />

organised several articles from our busy counsellors on<br />

brain health, brain therapy, sound and cognition, and how<br />

writing can enhance personal growth by creating a sense of<br />

empowerment and control.<br />

Nigel Carey updates us on the NDIS rollout and Ros Harman<br />

tells you what it is like to be swept up in the procedures of<br />

the NDIS.<br />

You will find that our regular contributor’s Ros Harman and<br />

Narelle Taylor have returned for 20<strong>18</strong>. We also have a special<br />

article from Carl Marche, a carer with a refreshing outlook.<br />

We definitely want to hear more from the unsung heroes – the<br />

carers of people with multiple sclerosis<br />

The effervescent Dawn Burke tells us all about her<br />

volunteers and the outreach news completes the suite.<br />

Thank you for your contributions, keep them coming,<br />

and on behalf of the team here at the <strong>Bulletin</strong> treadmill,<br />

we hope you enjoy this remarkably informative stunning<br />

blood-red super-blue-moon special <strong>Bulletin</strong>.<br />

Do you want to receive<br />

the <strong>Bulletin</strong> online?<br />

Want monthly<br />

information updates?<br />

Register your email address today to start receiving our<br />

monthly Vitality e-newsletter and the <strong>Bulletin</strong> magazine online.<br />

Just email damien.hill@mswa.org.au or call 9365 4814<br />

and let us know your current email address.<br />

4 | <strong>MSWA</strong> BULLETIN AUTUMN 20<strong>18</strong>



“Do not wait until the conditions are perfect to begin. Beginning makes the conditions perfect.”<br />

Alan Cohen<br />

In many respects this quote defines effective organisations.<br />

Our world is so fast-paced, that waiting for perfection would<br />

be an exercise in futility! We are very conscious of this at<br />

<strong>MSWA</strong> and understand that the sensible management of<br />

today’s risks creates tomorrow’s environment.<br />

Towards the end of 2017, the State Government made the<br />

important and long-awaited decision regarding the National<br />

Disability Insurance Scheme (NDIS) in Western Australia. We<br />

now have clarity regarding the future, and WA will join the<br />

federally funded NDIS from 1 July 20<strong>18</strong>.<br />

Although we were clear about the model that we felt offered<br />

best fit for people with disabilities in WA, our approach at<br />

<strong>MSWA</strong> is - and always has been - to support either decision<br />

wholeheartedly, and to do everything within our power to<br />

make it work. Our charter to serve Members and Clients as<br />

the Scheme rolls out across Western Australia made that<br />

a critical principle. By 2020, all areas of WA will be part of<br />

the NDIS.<br />

People already in the Western Australian Scheme (WANDIS)<br />

will continue to receive services and will be fully transitioned<br />

into the National Scheme. I am pleased that <strong>MSWA</strong> is an<br />

approved NDIS service provider and we welcome new,<br />

eligible participants. We never forget that it is our Members<br />

and Clients who live with their neurological condition every<br />

day, and our goal is to help them with the path they choose,<br />

and to ensure they are maximising their benefits.<br />

I’m pleased to share that we have commenced construction<br />

of the new <strong>MSWA</strong> Supported Accommodation and Services<br />

Facility, in the northern suburbs of Perth. The $8 million<br />

facility in Butler will include a services hub – a one-stop shop<br />

for people with multiple sclerosis (MS) and other neurological<br />

conditions, as well as a high support accommodation facility.<br />

Residents will have their own self-contained unit, set within<br />

a safe environment, that includes onsite 24-hour, 7-day-aweek<br />

care for younger people who may have otherwise had<br />

to face the frightening possibility of living in an aged-care<br />

facility. With a decent following breeze and a normal winter<br />

that doesn’t hold up the build, we believe that the welcome<br />

mat will be laid out for Members and Clients in early 2019.<br />

This facility could not have been built without the strong<br />

foundations of our ongoing commercial activities and financial<br />

success. Neither would we have achieved our continued<br />

growth in Member and Client services, nor our leadership<br />

position as the largest funder of MS research in Australia.<br />

With that in mind, and with three quarters of the budget year<br />

behind us, we are keen to finish well. I am pleased to report<br />

that our financials are strong on profit and loss for current<br />

trading, cashflow for operation, and in our balance sheet that<br />

safeguards our future.<br />

The results are in for the <strong>MSWA</strong> Albany Swim and the inaugural<br />

Albany Ride, which saw over 300 participants come together<br />

to support the South West community, raising tremendous<br />

funds for people with MS and other neurological conditions.<br />

Congratulations and thank you for your continued support.<br />

Our 700+ staff do a brilliant job and I am constantly proud<br />

of their dedication and performance. Some are ‘newbies’,<br />

bringing fresh ideas and thinking. Others are seasoned<br />

campaigners bringing history and experience to the play. All<br />

are valued. As <strong>MSWA</strong> secures its position as an employer<br />

of choice, it is very pleasing to note that 14 staff will be<br />

receiving long service awards in the forthcoming ceremony,<br />

celebrating their personal milestones, ranging from 10 to 25<br />

years’ service.<br />

What’s coming up? World MS Day Wednesday, 30 May is fast<br />

approaching and <strong>MSWA</strong> will once again be providing lots of<br />

opportunities for involvement. Plus, our annual Step Up For<br />

<strong>MSWA</strong> (the stair-climb of Perth’s tallest building) is in June.<br />

Stay tuned.<br />

And so, our approach will remain. To continue to work<br />

hard as we create those new beginnings, and in turn,<br />

strive for ‘perfection’ for our Members and Clients.<br />

Until next time.<br />

<strong>MSWA</strong> BULLETIN AUTUMN 20<strong>18</strong> | 5




“Great things never came from comfort zones.” Ben Francia<br />

Welcome to 20<strong>18</strong>, although its already speeding by! I hope this<br />

year brings us all good health, success, and an opportunity to<br />

enjoy the people and things that are meaningful to us.<br />

Comfort zones feel like that happy place where we are on<br />

familiar ground and generally know how things will go and<br />

turn out. Change challenges our comfort zones, often in a good<br />

way, and allows us to think about new opportunities, review<br />

how things have always been done, make improvements and<br />

set new goals. Of course, uncertainty makes this process a<br />

bit more challenging, however being proactive and embracing<br />

change will help you along your journey.<br />

There has been ongoing change in the Community and<br />

Disability sectors for the last five years at least. The birth of the<br />

concept of a national scheme, the National Disability Insurance<br />

Scheme (NDIS), to improve equity of access to funding for<br />

people affected by disability, has been welcomed by all.<br />

As you know WA has been trialling two versions of the Scheme.<br />

Whilst they had some differences, based on pre-existing<br />

Disability Services Commission advances, they both seek<br />

to deliver more timely access to funding for reasonable and<br />

necessary supports, and give the individual choice and control<br />

over how their funding is used and who provides their services.<br />

Initially, it appeared that we would go ahead with the State<br />

version, however, this decision was under review and in<br />

December we heard that the State Government decided<br />

that WA would now be joining the Federal Scheme. So, after<br />

months of speculation and uncertainty we now have the way<br />

forward. Fortunately, <strong>MSWA</strong> has not sat back and waited for<br />

a decision, we have continued to plan for our future and get<br />

on with business as usual.<br />

We are very fortunate, through hard work and sound<br />

governance, to have the resources available to us to meet<br />

these challenges and opportunities, to continue to expand<br />

our location footprint, to have our dreams and then see them<br />

come to life.<br />

As you will have heard we are now open in Joondalup,<br />

replacing <strong>MSWA</strong> Wangara. Our new Butler facility is well and<br />

truly underway and on track for finishing early 2019 - a large<br />

services hub and ten high support accommodation units. We<br />

now have a presence in Mandurah! A leased premise has been<br />

fitted out to provide a services hub for our Members and NDIS<br />

Clients in the region. This is great news and staff now have a<br />

base bringing them closer for home visits. Busselton is next in<br />

our sights, once again fitting out a leased premise to provide a<br />

services hub, bringing our staff together and providing a gym!<br />

I recently visited Albany for a Members Forum and the group<br />

is getting quite excited about our plans to build high support<br />

accommodation in the area. They are also eagerly awaiting<br />

their turn to roll into the NDIS in 2020.<br />

We are also currently undergoing a refit at Wilson. This will<br />

see the physio gym and massage room expanded but will also<br />

provide additional, much needed staff desks. Our staffing<br />

has grown radically to match increased demand under the<br />

NDIS and we have been quite cramped. This fit out will see a<br />

great improvement in the surrounds. Of course, home renos<br />

are never easy and we have had to relocate staff within and<br />

outside of the building, and the Outreach Group has relocated<br />

to Como temporarily. But with our ‘eyes on the prize’ we are<br />

keen to get through the next few months, so we can get back<br />

to normality.<br />

Courtesy of our generous event supporters we continue to<br />

provide essential equipment to benefit people with other<br />

neurological conditions in our local hospitals. Participants<br />

can nominate what condition they choose to support and it’s<br />

our great pleasure to approach the hospitals to see what they<br />

have on their wish lists!<br />

As we face this year of great change and even greater<br />

opportunities, please remember that our Member Services<br />

staff are here to help. Whether it’s information about the<br />

latest research and treatments or you want to chat with one<br />

of the health team about your symptoms or challenges, we<br />

can help you navigate your way through the mountains of<br />

information, much of which isn’t necessarily accurate. Just<br />

telephone 9365 4888 or email get-in-touch@mswa.org.au<br />

The monthly Vitality e-newsletter also has updates on the<br />

various programs and forums that may be of interest.<br />

If you would like to know more about the NDIS, see Nigel’s<br />

update in this addition. We will be contacting Members in the<br />

July roll out areas by letter and arranging local information<br />

sessions and pre-planning advice. These are great ways to<br />

enhance your knowledge about the NDIS and maximise your<br />

opportunity during planning.<br />

Our annual MS Awareness Week Members Forum will be held<br />

in the first week of June and we will confirm the date and<br />

location very soon.<br />

We hope you enjoy this <strong>Bulletin</strong>. Our staff and contributing<br />

Members have provided some great articles and stories<br />

for your information and enjoyment.<br />

6 | <strong>MSWA</strong> BULLETIN AUTUMN 20<strong>18</strong>





I must admit I am a huge Maggie Beer fan. I enjoy her TV<br />

shows, love her recipes and foodstuffs and have been lucky<br />

enough to visit her farm in SA, where I even participated in<br />

a food preparation demonstration! That’s my claim to fame. I<br />

sautéed mushrooms on her TV set in front of a group of other<br />

diehard fans and had my first introduction to verjuice! And I<br />

bought an apron to prove it.<br />

Last year I was lucky enough to buy tickets to the Perth<br />

book launch for Maggie’s Recipe for Life, attended by Maggie<br />

and WA’s Professor Ralph Martins - a leading Alzheimer’s<br />

researcher. Accompanied by my bemused youngest daughter<br />

we sat through an entertaining and educational session in<br />

a Q&A-style forum and bought our books which were then<br />

signed by both authors.<br />

Maggie and Ralph had met at their Australian of The Year<br />

ceremony and got chatting about the benefits of healthy<br />

eating and ageing, and the potential for dietary changes to<br />

help ward off chronic diseases and Alzheimer’s.<br />

This book not only contains the scientific information and<br />

evidence around positive diet influences, but also a range of<br />

healthy recipes and hints. It’s full of lovely photos too.<br />

Professor Martins says that more than one million Australians<br />

and their families are affected by Alzheimer’s, and recent<br />

research has shown healthy eating, regular aerobic exercise<br />

and plenty of mental stimulation can help reduce the risk of<br />

developing the disease.<br />

He added ‘lifestyle’ diseases such as type 2 diabetes, high<br />

blood pressure or heart disease can increase our chances of<br />

developing brain damage in the future. But he said a diet rich<br />

in fresh fruit and vegetables, fish, dairy foods, healthy fats<br />

and whole grains can help fight cognitive decline. “You have<br />

the power to give yourself the very best chance of a healthy<br />

future,” Professor Martins said.<br />

Maggie, who is passionate about promoting good food for<br />

aged-care residents commented, “to reach a healthy old age<br />

you must act now, whether you are 30 or 50. I have been<br />

delighted to work with Professor Ralph Martins and I have<br />

learned that if we are to avoid Alzheimer’s and other lifestyle<br />

diseases, it is what we eat today that matters.”<br />

I found it reassuring that extra dietary research evidence was<br />

discussed and is still being gathered regarding brain health<br />

and MS, of course. There was an overlap of advice regarding<br />

fish oils and Vitamin D and it was great to hear that a healthy<br />

balanced diet benefits all.<br />

<strong>MSWA</strong> Research Fellowship recipient, Dr Lucinda Black, is<br />

adding to this body of evidence and sharing findings with our<br />

Members at various forums.<br />

The proceeds from Recipe for Life are shared between<br />

the Maggie Beer Foundation and the Lions Alzheimer’s<br />

Research Foundation.<br />

<strong>MSWA</strong> BULLETIN AUTUMN 20<strong>18</strong> | 7




WA based and <strong>MSWA</strong> supported MS research:<br />

The PhoCIS Study, Professor Prue Hart<br />

This WA based study, partly funded by <strong>MSWA</strong>, seeks to<br />

identify if treating people who have had an isolated attack of<br />

MS (termed CIS), using UVB narrow band light therapy, can<br />

reduce the risk of conversion to MS.<br />

Conducted by WA scientists at the Telethon Kids Institute, this<br />

project has shown some very promising results, so much so<br />

that MS researchers in Scotland would like to replicate the<br />

study there.<br />

The theory is that sun exposure suppresses the immune<br />

system and that the UVB induces synthesis of Vitamin D and<br />

other molecules, which positively affect the immune system.<br />

In this study UVB narrow band phototherapy is given for<br />

CIS within 3 months of the attack. All participants receive<br />

Vitamin D supplements initially, and then half cease Vitamin D<br />

supplementation and receive UVB treatment, whilst the other<br />

half continue both Vitamin D supplements and UVB.<br />

The researchers are analysing the results but also exploring<br />

possible blood markers that may potentially help predict the<br />

time to relapse.<br />

Dietary Factors and MS<br />

Increasingly, there is a body of evidence that diet affects<br />

immune function and plays a part in chronic inflammation and<br />

the development of a number of chronic conditions.<br />

We know that antioxidants neutralise the free radicals<br />

produced in inflammation and there are many people with<br />

MS who modify their diet after diagnosis.<br />

Until now, there have been several exclusion diets that claim to<br />

cure MS and other conditions but overall there has been a lack<br />

of scientific evidence to support any of these interventions,<br />

some of which have caused other health issues.<br />

Thankfully, we are now seeing greater interest in trying<br />

to identify dietary recommendations with some level of<br />

confidence.<br />

Local clinician, researcher, and WA Australian of the Year,<br />

Professor Ralph Martins AO, has recently appeared in the news<br />

regarding dietary recommendations that can potentially reduce<br />

the risk of developing Alzheimer’s by approximately 12%.<br />

Some of his work has application across other disease groups<br />

and supports Brain Health initiatives and adds to the weight<br />

of evidence. Read about some of his work at https://particle.<br />

scitech.org.au/food/warding-off-alzheimers-through-goodfood/<br />

Dr Lucinda Black, <strong>MSWA</strong> funded researcher at Curtin<br />

University is continuing her work analysing information and<br />

results obtained through two large MS studies, one in the<br />

USA and one in Australia. Lucinda is keen to identify if dietary<br />

habits can influence causation of MS and, in the longer term,<br />

if dietary changes can influence MS symptoms.<br />

From MS Research Australia:<br />

Understanding the male vs female difference<br />

https://msra.org.au/news/males-vs-female-great-ms-divide/<br />

Summarising research published in the USA, it is<br />

acknowledged that women are 70% more likely to develop<br />

autoimmune diseases, including systemic lupus erythematous<br />

(SLE), rheumatoid arthritis, and MS, whereas infections can<br />

cause more serious illness in men.<br />

Researchers feel that sex hormones, including estrogen and<br />

testosterone, clearly influence disease susceptibility, but the<br />

mechanism has remained unexplained.<br />

While most studies have focused on what causes the<br />

damaging inflammation in females, they believe there is much<br />

to be learned by studying the factors that confer protection to<br />

males.<br />

Using a mouse model of MS, EAE, they identified a<br />

testosterone-driven pathway mediated by IL-33, which is a<br />

chemical that helps the cells of the immune system signal to<br />

one another.<br />

It is thought that these results may possibly help explain why<br />

females are more likely to have an autoimmune type response<br />

than males. It may also help explain males’ susceptibility to<br />

developing MS, which increases as they age, and as their<br />

levels of testosterone fall.<br />

This research could have implications for the development of<br />

therapies in the future.<br />

8 | <strong>MSWA</strong> BULLETIN AUTUMN 20<strong>18</strong>

Read more at:<br />

mswa.org.au/researchupdate<br />

From the UK MS Trust:<br />

https://www.mstrust.org.uk/research/research-updates<br />

Diet quality is associated with disability and symptom<br />

severity in multiple sclerosis.<br />

This North American study sought to assess the association<br />

between diet quality and intake of specific foods with disability<br />

and symptom severity in people with MS.<br />

The study analysed dietary information surveys from 7,639<br />

(68%) responders, of whom 6,989 had physician-diagnosed<br />

MS. Results suggested that those with higher quality diet<br />

scores had lower levels of disability, lower reported depression<br />

scores, and less severe fatigue and pain.<br />

The researchers concluded that this large cross-sectional<br />

survey suggested that a healthy diet and a composite healthy<br />

lifestyle are associated with lower disability and symptom<br />

burden in MS.<br />

However, the results do not necessarily confirm that what you<br />

eat has a direct impact on your MS symptoms. It has some<br />

limitations as this was a one-off survey and it can’t shed<br />

further light on whether people with healthy diets continue to<br />

have lower levels of disability in the long term.<br />

Therefore, it is important that there is further research to help<br />

us to understand better the influence of a healthy lifestyle,<br />

including a balanced diet.<br />

Could textured insoles improve walking?<br />

Sensory feedback plays an important role in controlling<br />

balance, posture awareness, gait and overall mobility.<br />

People with MS often have poor sensation on their soles – thus<br />

wearing of insoles, with a bumpy surface, could increase sensory<br />

feedback leading to improvements in balance and walking.<br />

This investigation pooled the results of three earlier studies,<br />

of 85 people with MS, which compared textured insoles with<br />

smooth insoles.<br />

Overall, the review concluded that textured insoles have no<br />

effect on balance or walking. The researcher suggested that<br />

sensory feedback from muscles and joints in the lower leg<br />

and feedback from other senses such as vision, touch or the<br />

semicircular canals of the inner ear may be more important in<br />

maintaining balance and walking style.<br />

As there were limitations, being only three small studies,<br />

some Australian researchers are now recruiting 176 people<br />

for a three-month trial to try to identify any benefits.<br />

From MSIF<br />

https://www.msif.org/news/20<strong>18</strong>/02/14/antidepressantdrug-may-treat-progressive-ms/<br />

Antidepressant drug may treat Progressive MS<br />

Funding is now allocated internationally to seek a better<br />

understanding of progressive MS and to try to identify<br />

potential treatments.<br />

A group of Canadian scientists has screened 250 medications,<br />

from 1040 potential treatments used in other diseases, as<br />

potential therapies for progressive MS; this process identified<br />

clomipramine as a potential therapy.<br />

The idea was to identify if any of these drugs could influence<br />

some of the underlying mechanisms of progressive MS.<br />

‘Drug repurposing’ or ‘drug repositioning’, is where a known<br />

drug is used to treat a different disease. The advantage of<br />

this repurposing is that the drug has usually already passed<br />

safety tests and thus could pass more quickly through the<br />

necessary clinical trials and regulatory approval processes.<br />

Next, the team tested the ability of these medications to<br />

protect neurons against a range of damaging scenarios. From<br />

this, they identified 14 medications that could protect neurons<br />

and, after further testing, reduced this to four.<br />

The next step was to identify whether these four medications<br />

could influence certain immune cells that are involved in<br />

progressive MS. This narrowed the list down to just one<br />

medication: an antidepressant called clomipramine.<br />

The research team were then able to take this promising drug<br />

forward into the more complex and expensive experiments<br />

required to assess whether clomipramine could slow disease<br />

progression.<br />

The scientists used mice with two different types of<br />

progressive MS-like disease. In both models, clomipramine<br />

was able to reduce the clinical severity of the disease,<br />

including the reduction of disability progression. The results<br />

suggested that this may be due to a reduction in the number<br />

and activity of immune cells moving into the brain and spinal<br />

cord. There was also less degeneration of nerve cells in the<br />

animals treated with clomipramine.<br />

continued over<br />

<strong>MSWA</strong> BULLETIN AUTUMN 20<strong>18</strong> | 9

This study is exciting in that not only has it identified a<br />

possible medication that might be beneficial for people<br />

with progressive forms of MS, but it has also demonstrated<br />

a thorough and systematic approach that could be used to<br />

screen other large panels of medications and identify drugs<br />

that could be repurposed for progressive MS.<br />

3D printing to help MS drug discovery<br />

A group of North American scientists has used 3D printing to<br />

create a model that could be used to aid MS drug discovery.<br />

3D printed ‘axons’ have similar physical and mechanical<br />

properties to the axons in the human brain. The scientists<br />

can change the properties of the artificial axons, so they can<br />

test and discover different aspects of myelination and mimic<br />

both healthy and damaged axons.<br />

In an article published in the journal ‘Nature’, it is reported<br />

that the 3D printed axons have the potential to help scientists<br />

make fundamental discoveries about the myelination process,<br />

as well as assist with cheaply and rapidly screening large<br />

panels of potential drugs before going into human trials.<br />

This is exciting technology which continues to evolve and<br />

improve.<br />

Stem cells, regeneration and repair in MS<br />

https://www.msif.org/research/stem-cells-regenerationand-repair-in-ms/<br />

Most cells in the body carry out very specific roles and are<br />

called specialised cells. Stem cells are different as they<br />

have two unique features: the ability to make many copies<br />

of themselves (self-renewal) and the ability to produce<br />

specialised cells (differentiation).<br />

Stem cell therapy is any treatment that uses or targets stem<br />

cells. This is usually to help replace or repair damaged cells<br />

or tissues but can also be used to prevent damage from<br />

happening in the first place.<br />

Researchers believe that stem cells may one day be used<br />

to treat MS, but research into stem cells is still at the very<br />

early stages and there are currently no approved stem cell<br />

therapies for MS.<br />

New guidelines, written by international MS researchers and<br />

MS societies from around the world, spell out hope for the<br />

future of MS stem cell research and debunk myths about<br />

stem cell clinics which claim to cure MS.<br />

• Autologous Hematopoietic Stem Cell Transplantation<br />

(AHSCT)<br />

Hematopoietic stem cells (HSCs) are a type of adult stem cell<br />

made in the bone marrow, which can produce the different<br />

cells found in the blood. Although only trialled in a small<br />

number of people so far, AHSCT has shown some success,<br />

particularly in aggressive forms of MS.<br />

• Mesenchymal Stem Cell Transplantation<br />

Mesenchymal stem cells (MSCs) are found in many parts of<br />

the body and are usually taken from bone marrow, skin and<br />

fat tissue. They can produce many different types of cells,<br />

including muscle and cartilage, and there is some evidence<br />

to suggest they might help promote remyelination and have a<br />

positive effect on the immune system.<br />

Several pilot or small-scale studies have investigated the<br />

safety of isolating, growing and re-injecting someone’s own<br />

MSCs. These studies have highlighted a number of minor<br />

side-effects and have revealed some promising early results.<br />

More studies are underway, including one funded by MSIF.<br />

Want to access research articles?<br />

Here are the places you can access up to date research<br />

articles relating to multiple sclerosis:<br />

• Vitality – Our monthly research focussed e-newsletter<br />

• Our website – https://mswa.org.au/news/latest-news<br />

• Right here as part of your Member magazine <strong>Bulletin</strong>.<br />

It includes great research articles and information every quarter.<br />

Just email communications@mswa.org.au if you would like any further information.<br />

10 | <strong>MSWA</strong> BULLETIN AUTUMN 20<strong>18</strong>


AND MS<br />


The brain can compensate for changes caused by multiple<br />

sclerosis (MS) lesions. It does this by adapting healthy areas<br />

of the brain to take on new functions. The capacity for<br />

the brain to do this is referred to as brain health or<br />

neurological reserve.<br />

People living with MS may experience some form of change in<br />

cognitive function, however these changes are often mild and<br />

can be referred to as a hidden symptom. A small percentage<br />

of people with MS will experience significant changes in their<br />

thinking abilities. Taking steps to maximise brain health can<br />

help manage these changes, protecting against cognitive<br />

decline, and helping to maintain a good quality of life.<br />

Whatever your MS diagnosis, the following strategies can<br />

be incorporated into your daily life and can contribute to<br />

improving lifelong brain health.<br />

Get Regular Sleep<br />

Sleep helps restore the brain by flushing out toxins that build<br />

up during waking hours. Sleep is also helpful for storing our<br />

memories. A good goal is to aim for seven to eight hours<br />

sleep per night.<br />

Keep Active<br />

Whatever is good for your heart is good for your brain! Physical<br />

activity increases blood flow to the brain which helps with<br />

growth of brain cells.<br />


Peer support is the help and support which people living<br />

with multiple sclerosis (MS) can provide one another. Having<br />

an opportunity to connect and support others, who you can<br />

identify with and share common concerns, has shown to<br />

improve people’s ability to cope with the challenges of living<br />

with MS. The unique benefit of peer support is that you can<br />

access the perspectives and experiences of others who have<br />

‘been there’ and understand where you are coming from.<br />

Support groups provide an opportunity to understand your<br />

diagnosis better and make positive changes to manage<br />

symptoms and live well with MS. By providing a safe and<br />

understanding space, support groups encourage you to<br />

communicate openly about your experiences.<br />

Having peers around you who understand what you are talking<br />

about, and have likely been through something similar, allows<br />

you to connect with others and create new friendships! By<br />

reducing feelings of isolation, support groups often empower<br />

people to be proactive in improving their health and wellbeing.<br />

Challenge Your Brain<br />

Your brain is a muscle, it needs exercise too! Challenging<br />

the brain helps strengthen and build new brain cells. Learn<br />

something new every day, pick up a book, take up a hobby, or<br />

research something you’re interested in.<br />

Rest and Relax<br />

Fatigue can affect the way we think. When we are more alert,<br />

we are able to manage our day to day lives better. Regular<br />

rest and relaxation can help you achieve a clearer mind.<br />

Socialise<br />

Social activities that involve mental and physical stimulation,<br />

like singing or team sports, benefit our brain health. Catch<br />

up with family or friends or get to know your neighbours to<br />

stimulate your brain!<br />

Eat Well<br />

A balanced diet benefits overall health and helps your brain<br />

function properly. Enjoy a variety of foods and cut back on<br />

processed foods and saturated fats. Foods rich in Omega-3<br />

fatty acids are also recommended. Follow the Australian<br />

Dietary Guidelines or liaise with your GP/Dietitian.<br />

<strong>MSWA</strong> has developed some ‘postcards’ for our Members<br />

which feature information on keeping your brain healthy.<br />

If you would like a copy, or for any other queries, please<br />

contact <strong>MSWA</strong> on 9365 4888.<br />

They are also a great source of new information on things<br />

such treatment and research updates.<br />

At <strong>MSWA</strong>, there are a variety of face-to-face peer support<br />

groups available. This includes groups for people living with<br />

MS, carers and friends and family. There is also a private<br />

online support group for people who are deemed low support<br />

and/or newly diagnosed. It is also possible to access a<br />

peer volunteer which involves one-on-one communication<br />

via phone or email. As well as individual support, our peer<br />

volunteers can be involved in sharing their story of MS at<br />

sessions such as the newly diagnosed ‘meet and greet’.<br />

Our peer volunteers are provided with training and<br />

support. If you would like to get involved, either by<br />

joining a new or existing support group or becoming a<br />

peer support volunteer, please contact Sarah Lorrimar,<br />

Coordinator of Health Education and Peer Support on<br />

9365 4858 or Sarah.Lorrimar@mswa.org.au.<br />

<strong>MSWA</strong> BULLETIN AUTUMN 20<strong>18</strong> | 11



JEAN HUDSON, <strong>MSWA</strong> COUNSELLOR<br />

I work as a Counsellor with <strong>MSWA</strong> and I am also a trained<br />

Expressive Therapist.<br />

Did you know that using a pen and paper can enhance personal<br />

growth by creating a sense of empowerment and control?<br />

Have you ever been feeling low, down in the dumps, stuck in<br />

a rut, or a little stressed out? Of course, the answer to that<br />

question will be ‘Yes’ for everyone.<br />

We all experience difficult times along with good times, and<br />

often struggle to find a happy equilibrium. For some, seeing<br />

a counsellor can help. For those who are creative, drawing,<br />

painting, listening to music, and dancing can help.<br />

You don’t need to be artistic to write, you don’t even need to<br />

be a prolific writer. All you need is a pen, a piece of paper, and<br />

the motivation to write. It’s inexpensive and something you<br />

can do at any time of the day.<br />

Expressive writing is different from writing in a journal or<br />

diary writing:<br />

• Journal/diary writing is usually free form, where the<br />

writer jots down whatever pops into their head, whereas<br />

therapeutic writing is often based on prompts or exercises<br />

• Journal/diary writing usually focuses on recording events<br />

as they occurred whereas writing therapy focuses on<br />

analysing the events and writing about the thoughts and<br />

feelings that arise following the event<br />

• Keeping a journal can be very helpful for the user as it;<br />

improves memory, records important events and can<br />

promote relaxation at the day’s end; writing about traumatic<br />

or extremely stressful events can have a significant<br />

healing effect<br />

Some of the benefits of expressive writing:<br />

• Several studies have shown the healing effects of writing:<br />

people who undertook writing for 15 minutes, four days<br />

in a row, following a traumatic experience, experienced<br />

better health outcomes for up to four months later (Baikie<br />

& Wilhelm, 2005)<br />

• Expressive writing may improve immune system functioning<br />

(Murray 2002)<br />

• Regular expressive writing can help the writer find meaning<br />

in their experiences, view things from a new perspective,<br />

and see the silver linings in their most stressful or negative<br />

experiences (Tartakovsky, 2015)<br />

How to get started<br />

You might be writing on your own and thinking of seeing a<br />

counsellor or you may already be working with a counsellor,<br />

he or she may be able to assist.<br />

• Use whatever works best for you, whether it is a beautiful<br />

journal or a cheap notebook<br />

• Decorate and personalise it if you wish<br />

• Set a goal to write for a certain amount of time each day<br />

• Choose where you will write each day<br />

• Follow the 5 steps to WRITE<br />

W what do you want to write about? Name it<br />

R review and reflect on it – close your eyes, take a few<br />

deep breaths and focus<br />

I investigate your thoughts and feelings. Start writing<br />

and keep going – don’t worry about spelling or<br />

punctuation<br />

T time yourself – write 5 to 15 minutes without stopping<br />

E exit by re-reading what you have written – reflect on it<br />

and write one or two sentences.<br />

It’s okay if you only manage a few words or if you write several<br />

pages. Write as if no one else will read it and avoid writing<br />

what you think people would like to read. You are writing<br />

about the good, the bad and the ugly as you experience it.<br />

You are writing to be honest, even if it is painful.<br />

Here are some prompts if you get stuck….<br />

• 100 things I love<br />

• 100 things that make me sad<br />

• 100 reasons to wake up in the morning<br />

• My favourite way to spend the day is ….<br />

• If I could talk to my teenage self, the one thing I would<br />

say is...<br />

• 30 things that make me smile<br />

• I really wish others knew this about me<br />

• Use 10 words to describe yourself<br />

• Write a list of questions to which you urgently require<br />

answers<br />

• List all the things you are grateful for<br />

“The truth knocks on the door and you say:<br />

“go away, I’m looking for the truth, and so it goes away.”<br />

Robert Pirsig, Zen and the Art of Motorcycle Maintenance.<br />

Finally, write from the heart, tell yourself the truth, trust<br />

the process – and enjoy!<br />

12 | <strong>MSWA</strong> BULLETIN AUTUMN 20<strong>18</strong>



“How much do you weigh?” I asked.<br />

It was an innocent question, but after 22 years of marriage<br />

I should have known better when the look of impending<br />

damnation came, as my wife slowly raised her head from the<br />

book she was reading.<br />

“Okay, how about this then….” as I proceeded cautiously,<br />

“are you close to 49kg?”<br />

“Why?” she said, in a long-guarded tone that implied I could<br />

have been after the secret code to the nukes.<br />

“It’s just that I have been reading about the Wife Carrying<br />

World Championships held annually in Finland, and the rules<br />

state that the minimum weight of the wife to be carried in the<br />

race is 49kg. It looks like fun and I thought we could give it go.”<br />

Not surprisingly there was silence and a slight shaking of the<br />

head as she turned the page and continued to read her novel.<br />

It was Melbourne Cup Day in 2005. We both sat together in<br />

the waiting room of Royal Perth Hospital, brought there by a<br />

bout of Optic Neuritis, pondering the cause of this illness that<br />

had rudely interrupted our busy lives.<br />

We assumed that after powering through the birth of 4<br />

children, my wife’s previous complaints of fatigue, imbalance<br />

and limb numbness were simply caused by the demands of<br />

parenting. Loss of eyesight in one eye however, told us there<br />

was something very wrong and had us thinking the worst.<br />

The lovely neurologist who presided over us soon provided<br />

the diagnosis: multiple sclerosis.<br />

Since that time, I have lost count of the number of times I have<br />

said to people, “My wife has MS”.<br />

At first, and now looking back, the way I said it was more<br />

about me than her. I was coming to terms with it! Yes, I felt<br />

bad for her having to go through this, but talking about it to<br />

others was really about working through how it would affect<br />

me, and the uncertainties I had. How will this impact the kids,<br />

what if she couldn’t work, how would we pay the bills, what<br />

if we couldn’t travel and continue with the perfect life we had<br />

planned? I was just the stereotypical man who really viewed<br />

things initially from my perspective.<br />

But now, I say “My wife has MS” to anyone who will listen, and<br />

it is said with a massive amount of pride. No, I would not wish<br />

MS on anyone and its chaotic and random decline is horrible,<br />

but what I have learned on this journey with her, is what an<br />

incredibly strong and amazingly resilient human she is.<br />

The inner beauty and peace that attracted me to her many<br />

years ago has risen to outshine the physical limitations that<br />

she endures daily and her appreciation of the simple beauties<br />

of life around her, despite the daily obstacles, is awe-inspiring.<br />

MS has brought us together, closer than I think we would ever<br />

have achieved without it.<br />

“It’s only 13,000kms from Perth to Finland,” I said, “and this<br />

sport is made for us” as I continued to read out aloud the first<br />

four rules set by the International Wife Carrying Competition.<br />

May I say, they seemed so relevant for many people partnered<br />

on an MS-related journey.<br />

RULE 1. The wife to be carried may be your own, or the<br />

neighbor’s, or you may have found her further afield. Well we<br />

don’t know in life, at times of need, who may carry us or for<br />

whom we may be the carrier.<br />

RULE 2. The length of the official track is 253.5 meters and<br />

has two dry obstacles and a water obstacle about one metre<br />

deep. Obstacles – talk to someone with MS and they will tell<br />

you about obstacles. That is one area in which they have an<br />

intimate knowledge. Obstacles, we step right over you, albeit<br />

very slowly and carefully.<br />

RULE 3. Each contestant takes care of his/her safety and all<br />

participants must enjoy themselves. The way we battle every<br />

day, take responsibility for, and even choose to be happy in<br />

the face of MS is our individual choice.<br />

RULE 4. The minimum weight of the wife to be carried is<br />

49kgs but any higher weight is acceptable. As the load gets<br />

heavier, we have no choice but to get stronger.<br />

“We have never been overseas together, so this could be our<br />

first trip now that the kids are getting older,” I said.<br />

Whether it was just to humour me, or if she had a genuine<br />

interest I am yet to determine, but she eventually said, “54kg”.<br />

“GREAT!” I exclaimed. “That means you only have to lose 5kg<br />

to get to the minimum weight, and being over 40, we qualify<br />

for the ‘Seniors’ class of the competition.”<br />

“Why the look? What did I say this time?”<br />

Note: At the time of publication the author is yet to have<br />

gained permission to lift his wife on to his shoulders, but<br />

the enthusiasm is ever-present.<br />

<strong>MSWA</strong> BULLETIN AUTUMN 20<strong>18</strong> | 13



CHERRY CHAPMAN, <strong>MSWA</strong> COUNSELLOR<br />

The ingredients of sound and cognition may appear to be<br />

a foreign concept for many, however, it is one that I continue<br />

to explore and navigate whilst studying for a Diploma in<br />

Sound Healing.<br />

Psychiatrist Bessel Van Der Kolk and Psychotherapist Babette<br />

Rothschild both write in detail about how the body stores<br />

adverse life events. Living with a chronic illness can have an<br />

impact on the architecture within the brain, interfering with<br />

the development and formation of neural pathways.<br />

Recently, I was delighted to be invited to share my knowledge<br />

on sound and cognition at the <strong>MSWA</strong> Stay in Focus Groups<br />

in Padbury and Beechboro. Maintaining a healthy balanced<br />

lifestyle is essential for individuals living with a chronic illness.<br />

Studies have shown that additional stress and fatigue on the<br />

body can lead to relapses, with some individuals experiencing<br />

cognitive processing issues as a result.<br />

Finding strategies and tools that reduce stress and fatigue<br />

is important in maintaining physical, emotional and<br />

psychological wellbeing. I have found that introducing sound<br />

into my sessions at <strong>MSWA</strong> has provided a greater sense of<br />

calm for some individuals.<br />

I understand that this style doesn’t suit everyone – it requires<br />

an openness and awareness on a holistic level. Creating a<br />

peaceful and tranquil ambience at Beechboro did come with a<br />

few challenges, however. Combining a guided body scan and<br />

creating a harmonious ensemble from the Tibetan and crystal<br />

bowls, Koshie chimes, ocean drum and rain stick, created<br />

a whole-felt body experience appreciated by the groups<br />

who participated.<br />

I emphasised a deep sense of listening through the whole<br />

body, beginning from the crown of your head down to your<br />

toes. The vibrations from sound instruments balance cellular<br />

energy, bringing greater harmony between the right and left<br />

hemisphere of the brain, which reduces stress and encourages<br />

a deeper sense of relaxation. Some of the comments from the<br />

group included;<br />

“Restorative and revitalising”, “Relaxing”, “Valuable” and<br />

“Energising”.<br />

Resources<br />

• The Body Remembers: The Psychophysiology of Trauma<br />

and Trauma Treatment - Babette Rothschild.<br />

• The Body Keeps the Score: Brain, Mind and Body in the<br />

healing of trauma – Bessel Van Der Kolk.<br />

• https://bengreenfieldfitness.com/podcast/brain-podcasts/<br />

how-you-can-use-sound-and-music-to-change-yourbrain-waves-with-laser-accuracy-and-achieve-hugefocus-and-performance-gains/<br />

• https://www.mstrust.org.uk/a-z/cognition-and-cognitivesymptoms<br />

• https://www.mstrust.org.uk/a-z/stayingsmart<br />

• Evelyn Glennie: How to truly listen | TED Talk | TED.com<br />

14 | <strong>MSWA</strong> BULLETIN AUTUMN 20<strong>18</strong>






Participation in this <strong>MSWA</strong> funded study now includes the option to receive<br />

balance therapy, as part of the treatment phase of the trial, at <strong>MSWA</strong> Wilson.<br />

Pre and post treatment assessments will be required at the<br />

Perron Institute Clinic, Nedlands.<br />

To participate in this study, you need to:<br />

- Be over <strong>18</strong> years of age<br />

- Have definite relapsing-remitting or a progressive form of MS<br />

- Have mild to moderate balance impairment (including falls), though able to walk<br />

- Walk 20+ meters with a walking aid<br />

This study aims to evaluate whether combining non-invasive brain stimulation<br />

(transcranial direct current stimulation – tDCS) with balance therapy will improve<br />

mobility and independence among MS patients with balance and/or walking impairment.<br />

If you are interested in participating in this study, you will attend twice a week sessions of balance therapy for<br />

6 weeks (12 sessions, each about 90mins). Half of our group of participants will receive the brain stimulation (tDCS)<br />

and half will receive sham brain stimulation prior to balance therapy.<br />

To date there have been no adverse effects associated with tDCS.<br />

If you would like to participate in this research or have any questions about the study you may contact:<br />

Jesse Dixon or Jenny Eisenhauer at the Perron clinic on 6457 0207 or at jesse.dixon@health.wa.gov.au<br />

or jenny.eisenhauer@perron.uwa.edu.au<br />

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<strong>MSWA</strong> BULLETIN AUTUMN 20<strong>18</strong> | 15

<strong>MSWA</strong> MEMBER ALMA-JEAN<br />



Member Alma-Jean Crowley has been living with multiple<br />

sclerosis for over thirty years and has never let her diagnosis<br />

dampen her positive spirit. Last year, one simple question got<br />

the ball rolling and Alma-Jean was introduced to some of the<br />

services the <strong>MSWA</strong> speech pathology team provides.<br />

As a former nurse, Alma-Jean noticed changes in her<br />

swallowing and decided to email the <strong>MSWA</strong> speech pathology<br />

team for some tips regarding travelling with dysphagia.<br />

Alma-Jean was hoping to plan a train journey across Australia<br />

and wasn’t sure how she would manage easily, thickening her<br />

own drinks along the way. The <strong>MSWA</strong> speech therapist was<br />

able to show her a range of single-serve premixed thickened<br />

fluids which are ready to go and perfect for travel as they<br />

don’t require any preparation.<br />

After meeting Alma-Jean face to face, her softly spoken<br />

voice lead to a referral to the Communication and Assistive<br />

Technology Service (CATS) at Fiona Stanley hospital. She was<br />

blown away by the different types of technology and services<br />

available in 20<strong>18</strong>.<br />

Since this visit, Alma-Jean has trialled an iPad with a textto-speech<br />

application that ensures no one misses hearing<br />

anything she has to say! The application offers a personal<br />

word prediction engine with the option of several voices that<br />

can be used to enhance voice output. It even has a cheeky<br />

wolf whistle which is perfect for getting the attention of<br />

Alma-Jean’s Committee Members when she is at her regular<br />

community meetings.<br />

“It is absolutely amazing as to what can be done today with<br />

people living with MS… the mind boggles! Even the drinks<br />

that you have introduced me to have worked wonders, and all<br />

one must do is simply ask you experts. One happy customer.”<br />

Alma-Jean, we hope we helped you with some tips and<br />

tools that will help you plan your trip and are looking<br />

forward to seeing some of your happy snaps!<br />

16 | <strong>MSWA</strong> BULLETIN AUTUMN 20<strong>18</strong>




Some people with multiple sclerosis and other neurological<br />

conditions find it difficult using Smartphones to text or surf the<br />

internet because these devices are becoming smaller every<br />

year. And with that, the keyboards are becoming smaller and<br />

harder to use too. These smaller keyboards are particularly<br />

hard to use for people with limited hand mobility, decreased<br />

sensation in their fingers or those who experience chorea (an<br />

uncontrolled movement).<br />

Some people simply have large fingers that press three buttons<br />

at once, instead of the one that they want to press! If you are<br />

one of these people, don’t worry. There are some exciting<br />

new (and free) iOS applications (Apps) and wireless devices<br />

out at the moment that are helping people communicate<br />

through technology!<br />

AntzFree - Use your head!<br />

AntzFree is a fantastic new free iOS App that uses your front<br />

facing camera to follow your head movements like a mouse<br />

(hands free). So far, the device includes a keyboard that<br />

allows text to speech, but developers hope to include Twitter<br />

and games in the future!<br />

Vysor<br />

Vysor is a Chrome mirroring App that displays your Smartphone<br />

on your computer or laptop. This App is great for people who<br />

have difficulty using small phones or tablet keyboards. Once<br />

your phone is wirelessly connected to your computer you can<br />

use your larger computer keyboard and mouse to send text<br />

messages, surf the internet, check your bank accounts or<br />

update your Facebook status. The Vysor App does cost about<br />

$2.50 a month, so make sure that it is appropriate for you.<br />

Wireless keyboards<br />

Wireless keyboards are a great way to attach a larger surface<br />

to your Smartphone or tablet through Bluetooth. There is a<br />

wide range of wireless keyboards available, ranging from $10<br />

at Kmart to $120 Logitech keyboards. I would suggest going<br />

to your nearest Officeworks or JB HI-FI to look through their<br />

options. These stores will let you try the device before you<br />

buy it, so make sure that your Bluetooth connection on your<br />

phone is working before you purchase anything.<br />

Text to speech or speech to text?<br />

Did you know that there are several iPhone and Android<br />

applications (Apps) that you can use to communicate more<br />

effectively? Some of these Apps create speech from text and<br />

others create text from speech... Are you still with me?<br />

Let’s start with Apps that convert text to speech. To use<br />

these Apps, you simply type what you want to say into your<br />

smartphone or tablet, click ‘speak’ and the App will talk for<br />

you! These Apps are particularly helpful for people who have<br />

quiet voices or difficulty talking. Listed below are some Apps<br />

that convert text to speech:<br />

• ClaroCom<br />

• Text To Speech<br />

• SayIt<br />

• Speak4Me<br />

• Predictable<br />

• Speak My Words - Text to Speech<br />

Just to confuse you, there are some Apps that work the other<br />

way around, so they turn your speech into text when you<br />

speak into your device. These Apps are great for people on<br />

the go who want to quickly send text messages or emails but<br />

don’t have time to sit down and type out a message.<br />

One example of this is using ‘Siri’ on your iPhone. If you have<br />

an iPhone, Siri is a great way to search the internet quickly,<br />

send text messages, check the weather and make calls<br />

without having to touch your telephone! Some Apps that turn<br />

speech into text include:<br />

• Dragon Dictation<br />

• Speech to Text Dictate Message<br />

• Transcribe - Speech to Text<br />

• iSpeech - Speech to Text<br />

If you are interested in using any of the new technology<br />

mentioned in this article please contact one of our<br />

Speech Pathologists on 9365 4888, or feel free to come<br />

down to the Speech Pathology office at Wilson for a free<br />

trial on one of our iPads.<br />

<strong>MSWA</strong> BULLETIN AUTUMN 20<strong>18</strong> | 17


ROS HARMAN, <strong>MSWA</strong> MEMBER<br />

The National Disability Insurance Scheme (NDIS) has been in<br />

the news for about four years now. It’s new! It’s going to be<br />

great! It will transform the lives of people with disabilities! It’s<br />

going to be too expensive! There are going to be problems!<br />

The Prime Minister kissed another baby! Blah, blah, blah.<br />

For the average pleb like me, the news has become confusing<br />

and boring.<br />

But the NDIS is coming to me, in July this year. A few weeks ago<br />

I was contacted by a Local Coordinator from the Department<br />

of Communities to start the process of developing my very<br />

own individual NDIS Plan. She came over one day and took<br />

notes as she asked me about my life. She wanted me to think<br />

about everything I do now, or want to do, and what help I<br />

might need to make it happen.<br />

We discussed the services I am already receiving from <strong>MSWA</strong><br />

like physiotherapy and occupational therapy, and the art and<br />

craft group I attend. I also mentioned the home care service<br />

I receive and the gardeners, the taxi subsidies, continence<br />

aids and advice, and maintenance of my mobility equipment.<br />

I have also discovered that all these services can be provided<br />

or coordinated by <strong>MSWA</strong>. It will be great to have everything<br />

provided by them, an organisation I know and trust. And as<br />

part of my plan all of these things will be funded by the NDIS.<br />

We also discussed some things I would like to do if I had<br />

support. I would like to go out sometimes to movies, or the<br />

theatre or exhibitions, but I have some anxiety about going<br />

alone. I would also like to travel interstate to visit my daughter<br />

and sister, or to my old home town, Albany. Currently, if I do<br />

these things I need to rely on the goodwill of my sisters or<br />

friends, and their availability. With funding from the NDIS, I<br />

will be able to pay a support worker to accompany me at a<br />

time of my own choosing.<br />

Not long after this visit, I received a draft copy of my plan. I<br />

noticed that I was feeling some anxiety at this stage, worrying<br />

about whether I had got it right. Had I included everything?<br />

What if I needed something else in the future? Would I be<br />

able to change things? I took the plan to the NDIS team at<br />

<strong>MSWA</strong> to check it out. The team member was very helpful<br />

and identified a couple of improvements that could be made.<br />

She became my advocate in the NDIS process and contacted<br />

the Local Coordinator to see that the suggestions were<br />

included. Knowing this, I felt a great weight lifted off my<br />

shoulders. She did tell me that this team of NDIS support at<br />

<strong>MSWA</strong> is there specifically to help Members with their NDIS<br />

process, preparing their plan and making sure they get the<br />

best outcome for them. In fact I could have had them there at<br />

the initial meeting with the NDIS Local Coordinator.<br />

One of the important messages of the NDIS is that it is about<br />

giving people with disabilities a choice. I have always been<br />

happy with <strong>MSWA</strong>’s support and fortunately it is well placed<br />

to provide many services. As I continue on my journey, with<br />

the possibility of increasing disability over time, <strong>MSWA</strong> will be<br />

my first choice as service provider.<br />

Change is scary. I’m happy with the way things are now.<br />

But change is coming anyway, and I am glad to have help<br />

as I negotiate my way through it.<br />

<strong>18</strong> | <strong>MSWA</strong> BULLETIN AUTUMN 20<strong>18</strong>



WA goes with the Federal model of the NDIS!<br />

We had all been waiting several months for the final decision<br />

to be made on whether WA would be adopting the Federal<br />

model of the NDIS or a State model of the NDIS.<br />

In mid-December the decision was finally made: WA is<br />

adopting the Federal model.<br />

<strong>MSWA</strong> has successfully worked across both the NDIS and WA<br />

NDIS trial sites and we have many Clients in both Schemes.<br />

We are therefore enthusiastically looking forward to this great<br />

opportunity!<br />

We are primarily relieved that a decision has finally been made<br />

and the sector can now move forward with greater certainty.<br />

From our Members’ point of view there is very little difference<br />

between the two Schemes.<br />

The models are underpinned by the same philosophy of<br />

‘choice and control’ and the benefits of both Schemes are<br />

very similar, so the impact on Clients will be minimal.<br />

So, what are the next steps?<br />

Clients with a current WA NDIS plan will receive a letter<br />

informing them of their transfer to the NDIS.<br />

The dates of the transfer are as follows:<br />

April – July: WA NDIS Clients living in Perth Hills, Bayswater,<br />

Bassendean, Chittering, Northam, Toodyay and York will be<br />

asked to transfer to the NDIS<br />

July – November: WA NDIS Clients living in Rockingham,<br />

Mandurah, Armadale, Murray and Serpentine-Jarrahdale will<br />

be asked to transfer to the NDIS<br />

August – October: WA NDIS Clients living in Cockburn and<br />

Kwinana will be asked to transfer to the NDIS<br />

September – December: WA NDIS Clients living in the lower<br />

South West will be asked to transfer to the NDIS<br />

The NDIS team at <strong>MSWA</strong> would be happy to help you better<br />

understand what this means and to guide you further on the<br />

process when you receive your letter.<br />

This year the NDIS will also be launched for the first time in<br />

the following new areas:<br />

July 1st<br />

• East Fremantle<br />

• Fremantle<br />

• Melville<br />

• South Perth<br />

October 1st<br />

• Joondalup<br />

• Wanneroo<br />

• Bunbury<br />

• Capel<br />

• Dardanup<br />

• Harvey<br />

• Waroona<br />

The NDIS team will be organising a series of information<br />

sessions to communicate how the NDIS can benefit you, and<br />

to help with pre-planning.<br />

Please don’t hesitate to contact <strong>MSWA</strong>’s NDIS team and we<br />

will register you for an information session in a location which<br />

is convenient for you.<br />

Please also feel free to circulate this information to people<br />

you know who have a neurological condition including stroke,<br />

Huntington’s Disease, Parkinson’s Disease, Motor Neurone<br />

Disease and acquired Brain Injury; to name a few.<br />

Please contact the NDIS team if you have any questions<br />

or if you require further information.<br />

Our NDIS team members are:<br />

Christine Richards: Client Relationship Coordinator<br />

Email: christine.richards@mswa.org.au<br />

Phone: 9365 4867<br />

Pranjal Pawar: Client Relationship Coordinator<br />

Email: pranjal.pawar@mswa.org.au<br />

Phone: 9365 4810<br />

Annabel Vasquez: Client Relationship Coordinator<br />

Email: annabel.vasquez@mswa.org.au<br />

Phone: 9365 4806<br />

<strong>MSWA</strong> BULLETIN AUTUMN 20<strong>18</strong> | 19




Curtin University Award<br />

The <strong>MSWA</strong> Occupational Therapy department was pleased<br />

to receive an award on Tuesday, 13 February at the Curtin<br />

University prize giving ceremony. The award, in the category<br />

of Speech and Social Work, was for organisational excellence<br />

in student supervision. It was a welcome recognition for our<br />

OT department staff, particularly the student supervisors who<br />

worked hard to give the OT students, both in the metro and in<br />

the South West area, a good learning experience.<br />

Sally Hunter, Curtin University Student Placement Coordinator, presenting<br />

award to Rosemarie Dravnieks, <strong>MSWA</strong> OT Manager and Jess Dinsdale,<br />

<strong>MSWA</strong> Senior OT .<br />

New Member Support for MS Fatigue Management<br />

Fatigue is the most common and disabling, yet invisible,<br />

symptom experienced by most people with MS and it affects<br />

all spheres of their lives. <strong>MSWA</strong> has recently sourced, and<br />

begun offering, the MS Energise App to assist with education<br />

for our Members in strategies for dealing with their fatigue. We<br />

are pleased to offer a subsidy for our Members to assist with<br />

the cost of the App which is available on the Apple App Store.<br />

Behaviour. Thoughts. Emotions. Body. Environment.<br />

The MS Energise App can help you manage your fatigue<br />

better. It consists of seven modules, each with a section in<br />

which you will learn some new information, a section in which<br />

you will interact with this new knowledge, and a section in<br />

which you will apply what you have learnt.<br />

MS Energise provides a comprehensive coverage of multiple<br />

factors that contribute to MS-related fatigue. In MS Energise,<br />

we discuss the differences between fatigue and just being<br />

tired, and look at the way that behaviour, thoughts, emotions,<br />

bodily factors, and the environment around us can all<br />

contribute to fatigue. Finally, when you’re making effective<br />

use of the many self-management techniques in MS Energise,<br />

we look at how to maintain these skills into the future.<br />

As you work through the content, each module contains<br />

information to learn, ways to interact with these ideas, and<br />

tools to apply them in your day-to-day life.<br />

The App costs $20 to download the full program, and<br />

<strong>MSWA</strong> is covering this cost for our Members. The program<br />

uses a clinically proven approach to help people with MS to<br />

maximise their energy. It is currently not available in Android<br />

form. Please contact the Occupational Therapy department<br />

on 9365 4804 if you would like more information. We are<br />

also keen to have feedback on the App and how it has helped<br />

those who have used it.<br />

OT Department staffing changes<br />

We have sadly said goodbye to a couple of colleagues who<br />

have been with <strong>MSWA</strong> for a few years, Russell Hulme, who<br />

has gone to pursue medical studies, and Taneeka Bettenay<br />

who has moved to NSW. However, we have also been<br />

fortunate to welcome several new staff to the OT team; both<br />

in the metropolitan area and in the South West. Some are<br />

former OT students of ours who have now graduated as OTs<br />

and some are experienced therapists joining us from other<br />

organisations.<br />

Donation Funded Equipment Purchases<br />

Because of the very successful and ongoing fundraising<br />

efforts of our <strong>MSWA</strong> events and fundraising staff, such as the<br />

Ocean Ride and Step Up 2017, we have been able to purchase<br />

several pieces of equipment for our loan pool, to benefit<br />

both <strong>MSWA</strong> Members and people with other neurological<br />

conditions such as stroke, Parkinson’s Disease, Huntington’s<br />

Disease and Motor Neurone Disease.<br />

These have included several different hoists with associated<br />

slings, ramps and other smaller equipment.<br />

We have also recently purchased a MOTOmed bike for people<br />

with Parkinson’s and a wheelchair for stroke survivors, which<br />

was gifted to Osborne Park Hospital. This is in addition to<br />

equipment purchased and handed over to SCGH and Fiona<br />

Stanley Hospitals. The hospitals are always very grateful<br />

for these donations of equipment that benefit many and are<br />

made possible through allocations by generous participants<br />

at our events.<br />

20 | <strong>MSWA</strong> BULLETIN AUTUMN 20<strong>18</strong>




As a Neuropsychotherapy Practitioner I work from a brainbased,<br />

holistic and integrated approach. We acknowledge that<br />

the brain has influence over our entire body and is essential<br />

for us to function in our everyday life. When the brain gets<br />

what it needs, it’s ready to repair, maintain and even change<br />

(re-wire). Not only does this improve our wellness but also the<br />

brain’s capacity to create new pathways (neurogenesis) and<br />

rewire (neuroplasticity). These actions enhance our resilience<br />

by enabling change and allowing us to cope with life’s many<br />

adversities.<br />

So, what do we need to maximise our brain wellness and<br />

enhance our resilience? Think of our resilience as a colosseum<br />

– the pillars that hold up the roof are sleep, nutrition, exercise<br />

and social connectedness. These pillars are essential for<br />

our brain health and therefore our capacity to be resilient to<br />

everything that life throws at us. Each pillar is as important as<br />

the other and each needs to be well maintained. If not cared for,<br />

these pillars can crack, leaving a fragile and unstable structure.<br />

Imagine a stressful life event like a storm. The pillars struggle<br />

and the roof becomes unstable. It might crack or even fall to the<br />

ground, but if the pillars are maintained and cared for, the roof<br />

has a stable foundation that supports it when the storm hits. If<br />

we take care of our pillars, we enhance our capacity to cope<br />

and even thrive during the most challenging times.<br />

The good news is that we can influence this. There are small<br />

things we can do which have a significant influence on our<br />

brain health and increase our capacity to bounce back from<br />

adversity and to thrive rather than survive. The challenge is<br />

motivating ourselves to do it. There are not always immediate<br />

rewards and in fact it can often feel uncomfortable and like<br />

hard work. A desire to develop healthy habits around sleep,<br />

nutrition, exercise and social connectedness is not new to us,<br />

but the impact it has on the physical wellness of our brain and<br />

our resilience has been underestimated.<br />

Sleep<br />

It is generally agreed upon that sleep is one of the vital<br />

ingredients for physical and mental wellness. REM (rapid eye<br />

movement, also known as dream sleep) is important for the<br />

connection and communication between our Smart (complex<br />

thinking) brain and our Impulsive (primitive) brain. During<br />

Non-REM (deep slow wave) sleep a chemical is released in<br />

our brain (BDNF) that is necessary for our brain to rewire and<br />

regenerate, a process that is vital for our capacity for wellness<br />

and resilience. Good sleep hygiene is essential.<br />

Exercise<br />

We have always been told exercise is good for our heart, but<br />

the benefits of regular activity/exercise are just as important<br />

for our brain wellness. We are not talking about marathons or<br />

endorphins. Manageable aerobic exercise has also been shown<br />

to release chemicals that reduce cortisol (stress hormone)<br />

and other chemicals (BDNF, serotonin and dopamine) which<br />

improve mood without side effects. Exercise has also been<br />

shown to improve learning and memory.<br />

Nutrition<br />

We often think of nutrition in relation to weight loss or<br />

management of a medical condition, however, there is<br />

increasing research that shows healthy eating patterns<br />

significantly enhance our brain’s plasticity and wellness.<br />

Social connectedness<br />

Just as we have a basic need for food and shelter, we also have<br />

the need to belong and form relationships. When we experience<br />

these interactions, it has a positive physical action on our brain,<br />

from a simple ‘hello’ with the shop assistant to going out with<br />

a group of friends.<br />

There may be times when our resilience is challenged to the<br />

extent that we feel overwhelmed and do not know where to<br />

begin. At <strong>MSWA</strong>, our counsellors and other <strong>MSWA</strong> team<br />

members can support and help you with this. This support can<br />

be face-to-face, via email, telephone or via a video conferencing<br />

platform for those who find it difficult to access one of our<br />

<strong>MSWA</strong> centres. If you would like to know more, please contact<br />

Lisa Papas on 9365 4811.<br />

References<br />

Arden, J. B., & Linford, L. (2009). Brain-based therapy with<br />

adults: evidence-based treatment for everyday practice. New<br />

Jersey, USA: John Wiley & Sons Inc.<br />

Rousouw, P, (2014). Neuropsychotherapy. Mediros.<br />

<strong>MSWA</strong> BULLETIN AUTUMN 20<strong>18</strong> | 21

THE DAY I<br />


ROS HARMAN, <strong>MSWA</strong> MEMBER<br />

“I would try being a pessimist, but I just know I would be no<br />

good at it.”<br />

I’m a happy person, generally. I’m not always cheerful, but I<br />

am reasonably content with my lot. Of course if I think for too<br />

long, there are a few things I could whinge about, but I usually<br />

try not to think for too long.<br />

I could whinge about using a wheelchair to get around, but the<br />

alternative is not to get around, so I don’t. I could whinge about<br />

the difficulty of finding ACROD parking when I go out, but I’m<br />

glad to be going out, so I don’t. I sometimes just park across<br />

two normal parking bays instead and no one’s complained<br />

yet, or at least not to my face. I’m actually looking forward<br />

with glee to the day when they do, as I have an eloquent and<br />

brilliant rant all ready to deliver.<br />

I could whinge about buildings that don’t have wheelchair<br />

access, but I don’t. Oh, hang on - yes I do, but that is perfectly<br />

reasonable to whinge about so it doesn’t count.<br />

I could whinge about having MS, and sometimes I do, but I’ve<br />

got a life to live so I haven’t got energy for whinging too long.<br />

Like most people, I want to be happy.<br />

Recently I read about the difference between happiness and<br />

pleasure. It has to do with the brain chemicals dopamine<br />

and serotonin. When we have a hit of pleasure like sugar, or<br />

alcohol, dopamine races around and excites a few neurons. If<br />

the neurons get overly excited too often they die, so to protect<br />

against that they down-regulate their dopamine receptors.<br />

This means that the next time around, you will need an even<br />

bigger hit of pleasure in order for the dopamine to work.<br />

This is how addiction starts, including alcoholism, or drug<br />

addiction and it doesn’t lead to lasting happiness. It usually<br />

leads to misery and regret.<br />

Serotonin, however, is the chemical that is activated during<br />

activities that make us feel contentment, like sleep or exercise,<br />

or in my case watching a Jane Austen film. It behaves<br />

differently from dopamine. Serotonin slows the neurons down<br />

instead of exciting them, and you end up feeling at peace with<br />

the world, or feeling what we call happiness.<br />

To me it sounds like serotonin is the Buddha of the brain,<br />

and takes us into a contemplative zen-like state. Mind you,<br />

chocolate does that for me too. Mmmm... chocolate ...<br />

Once upon a time when I was a child, I used to think that<br />

happiness was a five-cent bag of lollies and a teddy bear.<br />

Actually, sometimes I still think that, though the price of the<br />

lollies has gone up. As a teenager full of maudlin adolescent<br />

sentimentality, I developed the weird idea that if I imagined<br />

some situation that made me happy I had jinxed it, and it<br />

would never happen. When I found myself daydreaming about<br />

marrying Daryl Braithwaite from Sherbet as he sang about<br />

Summer love, like no other love, I would slap myself because<br />

I now knew that it was never going to happen. (Those of<br />

you who were teenagers in the ‘70s will know what I mean).<br />

Not allowing myself to imagine happy things meant that my<br />

teenage years were often quite miserable.<br />

As I got older, into young adulthood, I somehow developed<br />

a belief that happiness was something that happened to me<br />

like a lightning strike, or it didn’t, and that I had no control or<br />

choice in the matter. As a consequence, I sometimes made<br />

poor decisions and felt powerless.<br />

One day, when I finally grew up and turned 40, I came across<br />

the unique idea that I could have some choice about who I<br />

wanted to be in life, and how I could think about things. One<br />

day I worked out that the words I use to talk about myself<br />

or others affect how I feel. One day I discovered that telling<br />

someone you love them can make you fall in love with them.<br />

One day I worked out that feeling bad or sad or mad or glad<br />

was something I had a degree of control over.<br />

That was the day I changed my mind.<br />

Being happy is not always an automatic thing, and for me it’s<br />

not always easy. Sometimes I really have to work hard to take<br />

control of the way I am thinking, and consequently influence<br />

the way I feel. Like physical exercise, I have found that the<br />

more I practise, the better I get. Fortunately training the mind<br />

doesn’t hurt as much as doing push-ups, although it can be<br />

just as hard. There are lots of books around with advice on<br />

how to do it, and therapists and counsellors who can help<br />

too. Techniques like mindfulness, meditation and cognitive<br />

behavioural therapy are all about taking control of your mind.<br />

I also know that some people find it easier than others to<br />

decide to be happy, for all sorts of reasons.<br />

I want to be happy. I also like a hit of pleasure from time<br />

to time but I have to limit the quantity. So today I’ll just<br />

have one chocolate biscuit and one glass of wine. And to<br />

feed my serotonin I’ll watch Pride and Prejudice... again.<br />

22 | <strong>MSWA</strong> BULLETIN AUTUMN 20<strong>18</strong>



NARELLE TAYLOR, <strong>MSWA</strong> MEMBER<br />

<strong>MSWA</strong> had arranged for me to go on a wheelchair-friendly boat<br />

for a day, out of Fremantle Harbour, fishing, with a carer all<br />

to myself. I was really looking forward to it. I nervously hoped<br />

that even though I had never ever been seasick, I wouldn’t<br />

end up being the one, that day, who the entire boating party<br />

felt sorry for.<br />

I tried to think of any seafaring skills I had assimilated by<br />

having lived on board when I was younger, and MS-free, so<br />

that I might be able to be of assistance to the crew. I’d not<br />

only enjoy the day, but I’d also be a star. Oh, sure. In my<br />

dreams I would.<br />

It wasn’t the actual fishing that I really looked forward to.<br />

When I was diagnosed with MS, I had moved from our boat to<br />

live on-shore and I missed being on the water.<br />

I was therefore exhilarated by the prospect of being at sea<br />

again. Since my diagnosis I have been on a few sea cruises<br />

and have comfortably made my way around the liner on my<br />

scooter. It always felt just as if I were on land. Ocean cruise<br />

liners are so big that one can forget about actually being<br />

afloat and just become blasé about waking in a different port<br />

each morning. On a smaller vessel, one hears the motor and<br />

is conscious of the effort being made to travel any distance.<br />

I was resolved to the fact and accepted, sadly, that I would<br />

never again feel that oneness that you feel with the water,<br />

when floating close to the surface. I was living a life in a<br />

nursing home where I would never feel the salt spray on my<br />

face, a life where I would never again rock with the swell of<br />

the waves. So being on board that boat in Fremantle, with<br />

wind in my hair, felt fabulous.<br />

The ‘Fish Ability’ vessel, Top Gun, is 81m long which is large<br />

enough for passengers in wheelchairs to feel safe, but small<br />

enough to be comfortable leaning over the side when fishing.<br />

People were doing that avidly and there were prizes given<br />

for the first fish caught, the most fish caught, the largest<br />

fish caught and so on. The anglers took it so seriously. I was<br />

very happy just watching them fish. Baiting up, casting out,<br />

winding in their catch, and then unhooking the poor little fish.<br />

They wouldn’t have wanted to hear me chortling on about<br />

how smelly it was. I get fed plenty of fish at my place so I had<br />

no need to catch any myself. Really small ones were thrown<br />

back and a volunteer deck person filleted the keepers which<br />

were later offered – bagged and chilled – to all visitors as<br />

we disembarked.<br />

My selfish concern for my own freedom from seasickness<br />

was bought home to me when my carer, Kelly, told me that<br />

she was not feeling perfectly well. She stoically had lasted out<br />

the day and drove me home as if she were perfectly well. I<br />

made no provocative chatter about burly and our time on the<br />

boat was not spent discussing death wishes. I admired her.<br />

On board, there was a TV journalist and a cameraman who<br />

interviewed me. When I saw the film clip on TV the next day,<br />

I was mortified that my speech slurred so badly and thus<br />

I now need to enlist the assistance of the Speech Therapist<br />

at Wilson.<br />

At least I hadn’t been fishing or seasick, so I smelt alright.<br />


As a Christmas celebration and a well-earned break for our<br />

carers, <strong>MSWA</strong> held an end of year BBQ at Floreat Beach.<br />

With lovely summer weather, 13 carers from the Carer Support<br />

Groups enjoyed a tasty brunch provided by <strong>MSWA</strong>. Bonbons<br />

and Christmas outfits added to the festive atmosphere,<br />

whilst staff and carers enjoyed cooking together on the BBQ.<br />

Brunch was followed by a delicious pavlova and, adding to<br />

the Christmas spirit, one of the carers generously brought a<br />

home-made Christmas cake and a secret Santa lucky dip!<br />

If you are interested in joining our Carers’ Support Groups<br />

please contact our Counselling Team on 9365 4888.<br />

<strong>MSWA</strong> BULLETIN AUTUMN 20<strong>18</strong> | 23


UPDATE<br />


Happy New Year, and welcome to 20<strong>18</strong>. It’s great to be writing<br />

to all of you in this <strong>Autumn</strong> Edition, and the first <strong>Bulletin</strong> for<br />

the year.<br />

This year brings many changes to the ever-evolving <strong>MSWA</strong>.<br />

As many of you may be aware, Wilson will be having a<br />

much-needed refurbishment starting in March. These<br />

refurbishments have been in the planning stages for many<br />

months, and by the time this <strong>Bulletin</strong> reaches you, they should<br />

be in full swing.<br />

With it will be some slight chaos, confusion and upheaval. As<br />

with any major renovations this is inevitable, but if we trust in<br />

the process and go with the flow, the result will be amazing!<br />

Please remember it will be business as usual, with some<br />

relocation of services within and out of Wilson. Please don’t<br />

hesitate to ask questions. I would like to thank you for being<br />

flexible during this process, which allows for a smoother<br />

transition for all concerned.<br />

Let’s recap on 2017. What have we been up to here at <strong>MSWA</strong>?<br />

The Cove in Denmark is such a beautiful place to stay and<br />

the owners are also willing to do what is necessary to help<br />

the camps run smoothly. I tried a few new activities which<br />

everyone participated in, some more reluctantly than others,<br />

but a good time was had by all. I must say, what a creative<br />

bunch the South West Members are!<br />

Of course, following on from camp was our annual and best<br />

party of the year, the <strong>MSWA</strong> Members, Volunteers and Staff<br />

Christmas Party! We had a new venue this year, which was<br />

very cosy and intimate at times. The acts as usual were superb.<br />

I don’t usually like to pick a favourite, but I’m afraid this year<br />

the ‘Nurses Act of Greek Fountains’ was hilarious and was<br />

a step above the rest with a few dampening moments from<br />

either the fountains or laughing too much. Take your pick!<br />

Thanks again to all the staff and volunteers who helped plan<br />

for and set up this event. Events such as this don’t happen on<br />

their own and it takes many hands and many hours of hard<br />

work to coordinate and organise everything. Many staff were<br />

behind the scenes in organising this event, and I would like<br />

to take this opportunity to thank Donna Hill, Nicola Ryan and<br />

Giselle Martin for their part in organising things.<br />

I know what you do to make this happen, and on behalf of our<br />

volunteers, I wish to thank you from the bottom of our hearts.<br />

A quiet thank you to Kevin who volunteered to don a hot and<br />

sweaty red suit – it wouldn’t be the same without you, and<br />

your size eight boots. Special thanks to the marvellous QBE<br />

staff who have provided volunteers for the last six or more<br />

years to help at this party, and always with a smile.<br />

So, what has been happening in 20<strong>18</strong> so far? 20<strong>18</strong> brings<br />

with it new volunteers and others wanting to volunteer. I<br />

always try to accommodate potential volunteers, but this isn’t<br />

always possible.<br />

At <strong>MSWA</strong> we are very blessed to have a dedicated group of<br />

volunteers who have been with us for many years. It makes<br />

life much easier for myself, Members, and staff, when we<br />

retain the same volunteers and have little turnover. Thank you<br />

for being loyal and dedicated to <strong>MSWA</strong> and to the community<br />

of people that we serve. You are a testament to yourselves<br />

and the volunteering industry at large. Give yourselves a pat<br />

on the back, you deserve it.<br />

To our newest volunteers, and we have a few, the <strong>MSWA</strong><br />

family wishes you a warm welcome and hopes your time here<br />

is enjoyable and helps you on your own journey, whichever<br />

road that takes.<br />

I’m in the planning stages for the National Volunteers’<br />

Luncheon and hope to see all of you at this event. It is <strong>MSWA</strong>’s<br />

way of thanking you for all that you do. I hope you can make<br />

it, it will be great to see you there.<br />

Keep enjoying this beautiful weather we are having, be<br />

safe in all that you do, and remember, I’m only a phone<br />

call away 9365 4897. Take care and bye for now.<br />

Over the past six or more years <strong>MSWA</strong> has<br />

benefitted from having a dedicated team of QBE<br />

Staff volunteering for our Annual Members’ and<br />

Volunteers’ Christmas Party.<br />

December 2017 was no exception. Once again, they<br />

proved invaluable, assisting our Member Services<br />

staff to set up the venue, including the tree, to hand<br />

out food and beverages, and generally lending a<br />

willing hand in any task.<br />

They are such a pleasure to work with and we<br />

certainly rely on their good will and enthusiasm to<br />

make this event a great success. They genuinely<br />

love to come along to help and always ask if they<br />

can come again next year!<br />

Thank you, Team QBE, for supporting <strong>MSWA</strong> and<br />

our efforts.<br />

24 | <strong>MSWA</strong> BULLETIN AUTUMN 20<strong>18</strong>



Beechboro Lodge has finally completed its long-awaited<br />

makeover and the results are amazing!<br />

Our Members who use the Beechboro facility really<br />

advocated for these renovations, to ease the crowding in the<br />

physiotherapy gym and create a bigger space for massage.<br />

General Manager of Member Services, Sue Shapland and<br />

Physiotherapy Manager, Dave Hathorn, were then tasked<br />

to make it happen, and after consulting with the staff and<br />

Members, plans for renovations began!<br />

The start of Summer heralded the beginning of the exciting<br />

changes. The old wire fence running at the back of the<br />

property, that allowed little privacy and an unattractive view<br />

of a carpark, was the first to go. Although most of the fence<br />

had been covered in bougainvillea, it was not completely<br />

private. This old fence has now been replaced with a tall<br />

colorbond model with beautiful trim, adding the wow factor<br />

whilst increasing security.<br />

Friday, 15 December was the last day of Outreach for 2017,<br />

and it was all hands-on deck to pack up the building. Now<br />

that our outdoor area was privately secured, all of the<br />

physiotherapy equipment was hauled outside to clear the way<br />

for the walls and floors to be done. Outreach and the allied<br />

health offices were boxed up and furniture relocated. You<br />

should have seen Brenda’s kitchen – it was full to the brim!<br />

As the only room not undergoing changes, it was the main<br />

place to store everything, aside from outside.<br />

A very special thank you goes out to all the wonderful<br />

staff from across the different teams, who all lent a hand<br />

throughout this huge task.<br />

Once the colossal task of packing everything up was done,<br />

Joseph Jangi, our ever-trusty handyman and builder, set to<br />

the task of knocking down and rebuilding walls. He personally<br />


worked tirelessly for four weeks, over the Christmas break,<br />

as well as coordinating the various contractors to ensure the<br />

timelines were met.<br />

When all returned to work on Monday, 15 January, we had our<br />

socks knocked right off. We didn’t realise how much work he<br />

had planned to do and were stunned by the professional finish<br />

in every aspect.<br />

The first thing you notice as you step in the door, is the original<br />

old grey carpet has been replaced by a warm wood laminate<br />

surface throughout the main area and into the physiotherapy<br />

gym. This has lightened the area and gives the illusion of<br />

a much larger space. As you step in the door the smell of<br />

fresh paint wafts through, drawing your eyes to the shiny new<br />

lacquer that reflects from our walls and feature cornices, all<br />

lit up by new downlights.<br />

The physio gym room is now more spacious and impressive,<br />

after the wall to the old massage room was removed, and the<br />

area made into one big space. The massage room has been<br />

relocated to the other side of the building and is also a larger<br />

room, achieved by relocating a wall. All the offices have been<br />

shuffled about and you may need to pop your head in to find<br />

out who is where.<br />

The counselling and consulting room has also had a furniture<br />

makeover and will be repainted in due course.<br />

The first day was just as big as the pack up day. Whilst we had<br />

less staff for this exercise, due to unforeseen circumstances,<br />

the staff worked double time to get things sorted before the<br />

Members started arriving at 8.30am.<br />

Things have settled down nicely now after a few weeks,<br />

and everyone, staff and Members alike, are really<br />

enjoying our fresh new facility.<br />


Every three months, I eagerly travel up to Northam with <strong>MSWA</strong><br />

Counsellor, Cherry Chapman for a Peer Support Group, which<br />

includes Members from Northam and surrounds. Meeting us<br />

up there is MS Nurse, Dee Menzies, and we often have a<br />

guest visit from an allied health team member.<br />

Our most recent visit to Northam was in February at the<br />

Bridgeley Community Centre, with seven Members attending.<br />

The group began by catching up on their Christmas break,<br />

which included a spontaneous adventure of driving across<br />

Australia in a caravan! It was interesting to hear the group’s<br />

different perspectives and experiences of travel.<br />

The group was then asked if they had any topics or questions<br />

they would like to discuss. One of the Members had thoughtfully<br />

prepared a list of questions which began an engaging Q&A<br />

session, including topics such as cooling garments, medications,<br />

recent media coverage of MS, the NDIS, and exercise.<br />

After some morning tea, I gave a short presentation on brain<br />

health. This included an overview of why it is important for<br />

people living with MS to maintain their brain health, and<br />

suggested tips to help incorporate this into everyday life.<br />

To put some of these tips into practice, the group worked in<br />

pairs to complete a fatigue diary to help plan their day and<br />

completed some fun brain puzzles to challenge the brain.<br />

To end the afternoon, we discussed upcoming<br />

<strong>MSWA</strong> events and what Members would like for the<br />

next support group meeting. Based on the feedback, it<br />

looks like we will next be travelling up with one of our<br />

speech pathologists.<br />

<strong>MSWA</strong> BULLETIN AUTUMN 20<strong>18</strong> | 25



We have had a busy start to the year in The Great Southern,<br />

first with the <strong>MSWA</strong> Albany Ride, which was well attended<br />

with riders coming from Perth and all over to participate. 172<br />

riders entered the 80km, 40km or 10km distances. It was<br />

great to see all the family and friends come along to see them<br />

off on their way, so well done to the riders for participating,<br />

especially the kids who came back red-faced, puffing but<br />

keen for next year.<br />

Well done to the events team and all those who volunteered.<br />

Thank you for doing such a great job. The <strong>MSWA</strong> Albany Ride<br />

raised in excess of $20,000 for The Great Southern.<br />

The <strong>MSWA</strong> Albany Swim was another success raising more<br />

than $21,000, with 11 teams and 132 swimmers participating<br />

on the day. The events team worked hard to get it all together.<br />

Thank you and well done to everyone.<br />

We were invited to speak at Great Southern Grammar School<br />

to let them know what the money is used for, as well as giving<br />

an update on what <strong>MSWA</strong> does and our history. It was a great<br />

opportunity to say thanks to them for the support they have<br />

given us over the past seven years.<br />

Thank you to all who were<br />

able to make it along to our<br />

Members’ Forum. We received<br />

an interesting slant on diet and MS, with research showing<br />

that it is beneficial to have a healthy balanced diet with more<br />

fruits, vegetables and lean meats, oily fish and less processed<br />

foods. Dr Lucinda Black is doing some fantastic research in<br />

WA, supported by <strong>MSWA</strong> research funding, and it will be<br />

exciting to see what else she discovers.<br />

Sue Shapland provided an update on other MS research in<br />

Australia and overseas, as well as an update on the NDIS<br />

roll out and how our team can help our Members with preplanning<br />

support. Sue also discussed our plans for growing<br />

our locations, including building high support accommodation<br />

down in Albany!<br />

Suzanne Rice, our Physiotherapist, also gave a talk on the<br />

benefits of exercise, and that small amounts often can be<br />

a benefit.<br />

If you would like more information, please email<br />

albany@mswa.org.au or give us a call on 9841 6651.<br />


ANGIE WALLACE, <strong>MSWA</strong> MEMBER<br />

We did it! A win! Our Friday morning Outreach group buys<br />

multiple tickets in each <strong>MSWA</strong> Mega Home Lottery – eight<br />

tickets with Members buying $5 ‘shares’ in one or all tickets. In<br />

last November’s draw, Member Doug had the winning ‘share’<br />

and was pleased with a set of Bose Wireless Headphones!<br />

It’s nice to put faces to winners and we are certainly in this<br />

current lottery, with eight tickets again!! Time for a big win.<br />

Long-standing southside volunteer, Jan, has had a run of bad<br />

luck with her health over the past several months, as has her<br />

husband, Member and volunteer, Barry. Hurry and get well,<br />

both of you!<br />

Jenny Buchanan is back and thawed out from her recent<br />

holiday in the US – she definitely needed those gloves and hats.<br />

Member Judy has been cruising and we are waiting to hear<br />

about her adventures.<br />

The wonderful kitchen cooks, Rosemary and Peta, continue to<br />

amaze us. We loved those spectacular pineapple cheesecakes.<br />

The brand new gym equipment we recently acquired, a Multi<br />

gym and MOTOmed, have proven popular amongst the Members<br />

accessing physiotherapy - especially the new multi gym. It will<br />

surely help to keep us fit, and ready for more cheesecakes.<br />

Left: 2017 Xmas party at Gary Holland Centre in Rockingham –<br />

a wonderful event – venue perfect too. Longstanding Volunteers and<br />

Member Jan and Barry Wakelam.<br />

Right: Doug receiving his Mega Home Lottery prize.<br />

Tuesday’s group has taken up a new craft, diamond painting<br />

– which is made with beads, and looks like tapestry. Very<br />

clever ladies and certainly good for fine-motor skills.<br />

Our Rockingham centre is getting busier, especially<br />

since the roll-out of the NDIS in this area. Come and join<br />

in the fun.<br />

26 | <strong>MSWA</strong> BULLETIN AUTUMN 20<strong>18</strong>

20<strong>18</strong> EVENTS<br />

incredible scenery.<br />


SATURDAY, 17 FEBRUARY 20<strong>18</strong><br />

Be part of this unique community cycling<br />

event and enjoy some of Albany’s<br />

SATURDAY, 24 FEBRUARY 20<strong>18</strong><br />

Help us This make is an amateur a swimming difference event where<br />

in 20<strong>18</strong>!<br />

teams compete to swim the longest<br />

<strong>MSWA</strong><br />

<strong>MSWA</strong><br />

holds<br />

holds a<br />

number<br />

number<br />

of<br />

of<br />

events<br />

events<br />

throughout<br />

throughout<br />

the<br />

the<br />

year.<br />

year.<br />

All<br />

All<br />

funds<br />

funds<br />

raised<br />

raised<br />

enable<br />

enable<br />

<strong>MSWA</strong><br />

<strong>MSWA</strong><br />

to<br />

to<br />

provide<br />

provide<br />

support<br />

support<br />

and<br />

and<br />

services<br />

services<br />

to<br />

to<br />

people<br />

people<br />

living<br />

living<br />

with MS and other neurological conditions in Western Australia.<br />

distance with MS in and a set other eight neurological hour period. conditions in Western Australia.<br />

Help<br />

Help<br />

us<br />

us<br />

make<br />

make a<br />

difference<br />

difference<br />

by<br />

by<br />

joining<br />

joining<br />

us<br />

us<br />

at<br />

at<br />

one<br />

one<br />

of<br />

of<br />

our<br />

our<br />

many<br />

many<br />

events<br />

events -<br />

you<br />

you<br />

can<br />

can<br />

volunteer,<br />

volunteer,<br />

take<br />

take<br />

part<br />

part<br />

or<br />

or<br />

donate!<br />

donate!<br />


WEDNESDAY, SATURDAY, 1730 FEBRUARY MAY 20<strong>18</strong><br />

20<strong>18</strong><br />

Join us on World MS Day for a session of<br />

Be part of this unique community cycling<br />

Hip Hop Yoga & then catch us in the<br />

event and enjoy some of Albany’s<br />

Perth CBD for our annual street appeal.<br />

incredible scenery.<br />

ON<br />

ON<br />

WORLD<br />

WORLD<br />

MS<br />

MS<br />

DAY<br />

DAY<br />

SATURDAY, 24 FEB 20<strong>18</strong><br />

Rottnest Channel Swim<br />

SATURDAY, SUNDAY, 24 FEBRUARY 17 JUNE 20<strong>18</strong><br />

This A unique is an amateur vertical swimming challenge event to the where top of<br />

Central teams Park. compete Do you to have swim what the longest it takes<br />

distance to conquer in a 1,103 set eight steps hour to the period. top?<br />

THURSDAY, WEDNESDAY, 16 30 AUGUST MAY 20<strong>18</strong><br />

It’s Join time us on to World get dressed MS Day up for and a session enjoy a<br />

of<br />

night Hip Hop of good Yoga & food, then fine catch wine us and in the some<br />

fabulous Perth CBD auction for our items.<br />

annual street appeal.<br />



25 NOVEMBER 17 JUNE 20<strong>18</strong><br />

20<strong>18</strong><br />

Wednesday, 30 May 20<strong>18</strong><br />

Follow Western Australia’s beautiful<br />

A unique coastline vertical from challenge Fremantle to to the Hillarys. top of<br />

Central Put your Park. body Do – you and have bike what – on the it takes line<br />

and to conquer join us for 1,103 the steps cycle of to the year. top?<br />


World MS Day brings the global MS community together to share stories, raise awareness and<br />

campaign with and for everyone affected by multiple sclerosis.<br />

Wednesday, 30 May 20<strong>18</strong><br />

World MS Day brings the global MS community together to share stories, raise awareness and<br />

campaign with and for everyone affected by multiple sclerosis.<br />

To find out more information and how you can get involved, visit our website:<br />


SUNDAY, 27 MAY 20<strong>18</strong><br />

HBF Run for a Reason<br />

City 2 Surf<br />

It’s time to get dressed up and enjoy a<br />

night of good food, fine wine and some<br />

fabulous auction items.<br />

THURSDAY, SUNDAY, 16 AUGUST 26 20<strong>18</strong><br />

SUNDAY, 25 NOVEMBER 20<strong>18</strong><br />

www.mswa.org.au/support-your-cause/events<br />

For more information<br />

To find out more information and how you can get involved, visit our website:<br />

www.mswa.org.au/support-your-cause/events<br />

events@mswa.org.au<br />

or call 08 6454 3131<br />

Follow Western Australia’s beautiful<br />

coastline from Fremantle to Hillarys.<br />

Put your body – and bike – on the line<br />

WORLD MS DAY, and join us for<br />

WA<br />

the cycle of the year.<br />

Wednesday, COMMUNITY 30 FUNDRAISING May 20<strong>18</strong><br />

EVENTS<br />

For more information<br />

SATURDAY, World MS 24 Day FEB brings 20<strong>18</strong> the SUNDAY, global MS 27 community MAY 20<strong>18</strong> together SUNDAY, to share 26 AUGUST stories, 20<strong>18</strong> events@mswa.org.au<br />

Rottnest Channel Swim<br />

HBF Run for a Reason<br />

City 2 Surf<br />

or call 08 6454 raise awareness and campaign with and for everyone affected by multiple sclerosis.<br />

3131<br />

To find out more information and how you can get involved, visit our website:<br />

www.mswa.org.au/support-your-cause/events<br />

<strong>MSWA</strong> BULLETIN AUTUMN 20<strong>18</strong> | 27

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