Bulletin Spring 2018
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BULLETIN<br />
THE OFFICIAL MAGAZINE OF MSWA mswa.org.au<br />
SPRING <strong>2018</strong><br />
MSWA Member Matt Nichols<br />
and daughter Willow Nichols<br />
YOUNG DAD’S JOURNEY WITH MS<br />
UPDATE ON MSWA FACILITIES<br />
EMPLOYMENT AND MS<br />
TREENDALE RESPITE
MSWA’S MAGAZINE FOR PEOPLE LIVING WITH MS<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 />
WILSON CENTRE<br />
29 Parkhill Way (08) 9365 4888<br />
Fax (08) 9451 4453<br />
Freecall 1800 287 367<br />
See Health Team Dept contacts on this page<br />
MEMBER SERVICES<br />
DIRECTORY<br />
GENERAL MANAGER – MEMBER SERVICES<br />
Sue Shapland: 9365 4840<br />
INDIVIDUAL OPTIONS<br />
Manager Community<br />
Care Programs 9365 4851<br />
NDIS TEAM 9365 4824<br />
OUTREACH GROUPS<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 />
BUNBURY (WED) HUB<br />
1 Mason Street, Davenport 6454 2800<br />
BUSSELTON OFFICE<br />
1/21 Cammilleri Street 9754 2320<br />
MARGARET DOODY RESPITE HOUSE<br />
Manager, Chris Rush: 9385 9574<br />
FERN RIVER ACCOMMODATION<br />
Manager, Danuta Figurska: 9356 2747<br />
HAMILTON HILL ACCOMMODATION<br />
Manager, Jayne O’Sullivan: 9331 5780<br />
TREENDALE GARDENS RESPITE &<br />
ACCOMMODATION<br />
50 The Boulevard, Australind<br />
Manager, Linda Kidd: 9725 9209<br />
CONTACT US<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 />
MSWA, Locked Bag 2,<br />
Bentley DC WA 6983<br />
The <strong>Bulletin</strong> can also be viewed at<br />
mswa.org.au/bulletin<br />
EDITORIAL COMMITTEE<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, Sarah Lorrimar,<br />
Rosemarie Dravnieks, 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 />
MSWA’s staff, advisors, Directors or officers.<br />
PHYSIOTHERAPY Our team aims to provide treatment interventions to develop and maintain<br />
mobility and function. Our Physiotherapists are experts in movement and function, and work in<br />
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 and equipment.<br />
Rosemarie Dravnieks, Manager: 9365 4804 or OT Department: 9365 4888<br />
SPEECH PATHOLOGY Our Speech Pathologists provide support by assessing, diagnosing<br />
and creating individualised treatment programs for Members who experience swallowing and/or<br />
communication difficulties. We equip Members with information and strategies to promote better<br />
communication and safe swallowing.<br />
Jamaica Grantis, Manager: 6454 3140<br />
COUNSELLING, PEER SUPPORT & HEALTH EDUCATION<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 />
Kath Knights, 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 />
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 />
Geoff Hutchinson, Manager NDIS Business Development: 9365 4879<br />
CAMPS & RECREATION MSWA 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 />
DIETITIANS are university-qualified nutrition experts who promote general health and<br />
disease prevention/management through dietary changes. They provide evidence-based<br />
dietary counselling and education, empowering individuals, with practical strategies,<br />
to meet their goals and improve health, wellbeing and independence.<br />
Jamaica Grantis, Manager: 6454 3140<br />
2 | MSWA BULLETIN SPRING <strong>2018</strong>
LETTER FROM THE EDITOR<br />
DR GREG BROTHERSON<br />
“Change is everywhere. Today it is fine; tomorrow it could be snowing.”<br />
Anonymous.<br />
Welcome everyone to the <strong>Spring</strong> Edition of your <strong>Bulletin</strong>, once<br />
again written amidst the renovations by our willing contributors<br />
here at the treadmill. MSWA is on the move in so many places<br />
at the same time, it can be difficult to keep track of everything.<br />
Beside the roll-out of the Nation Disability Insurance Scheme<br />
(NDIS), it is the new MSWA facility at Butler that will capture<br />
the eye once completed, and I can assure you, it will be<br />
magnificent. You will learn about all of these other projects in<br />
this information-packed edition of your magazine.<br />
Change is also everywhere and impacting on our lives. When<br />
the fees for using another bank’s ATMs were waivered, my<br />
branch office at the Garden City Shopping Centre removed<br />
all of their ATMs from inside the Centre. They also failed to<br />
advise their customers, who were left to play ‘hide and seek’<br />
party games in the Centre looking for an ATM.<br />
What remains of a once thriving banking facility is reduced<br />
to the bank foyer, now home to a singular, brand-new model<br />
ATM with screens and keyboards which can carry out all of<br />
the functions of a real-life teller. If you want to find the sole<br />
remaining teller then join the queue behind the partition where<br />
there used to be four pleasant, courteous tellers situated.<br />
To be fair, after fifty-six years of marriage my wife and I<br />
have adapted well to change over the years, but the sudden<br />
confrontation with this inexorable march of technology threw<br />
us slightly off balance. Never mind, the bank’s concierge,<br />
an impeccable woman, was at hand to talk us though the<br />
intricacies of this new world of banking.<br />
Reassuringly our guide talked my wife through the procedure.<br />
It turned out to be easy enough, but hardly a pleasant<br />
experience. The concierge, however, could just as easily<br />
been thinking aloud when I heard her murmur, “change is<br />
everywhere … today it is fine; tomorrow it could be snowing.”<br />
This got me thinking about all the changes MSWA has to make<br />
to accommodate the game-changing NDIS. MSWA has never<br />
been stronger than it is at present. To continue to achieve its<br />
goals, it is now a provider of support services under programs<br />
administered pursuant to the NDIS Act 2013 (Commonwealth)<br />
and has rebadged itself as MSWA.<br />
Continued over<br />
INSIDE SPRING <strong>2018</strong><br />
LETTER FROM THE EDITOR 3-4<br />
FROM THE DESK OF THE CEO 5<br />
A MESSAGE FROM THE GENERAL MANAGER –<br />
MEMBER AND CLIENT SERVICES 6<br />
MS RESEARCH ROUND UP 7-9<br />
MSWA’S RECORD $3 MILLION INVESTMENT INTO RESEARCH 10<br />
THE NDIS CONTINUES ITS RAPID EXPANSION IN PERTH 11<br />
WITHIN A FAMILY SYSTEM 12<br />
WHEN CHANGE IS NOT A CHOICE 13<br />
LONELINESS: THE HIDDEN COST OF CHRONIC ILLNESS 14-15<br />
HOW TO SUCCEED IN LIFE 15<br />
HOW CAN I BE MORE ASSERTIVE? 16-17<br />
THE PEER VOLUNTEER 17<br />
WELLNESS 18-19<br />
DOES DIET PLAY A ROLE IN<br />
MS DISEASE PROGRESSION? 20-21<br />
ANTIOXIDANTS 21<br />
FATIGUE 22-23<br />
COGNITION 23<br />
UPDATE ON MSWA FACILITIES 24<br />
PRESSURE MAPPING 24<br />
EMPLOYMENT AND MS 25<br />
YOUNG DAD’S JOURNEY WITH MS 25<br />
THE ARTIST WITHIN 26<br />
THAT’S LIFE WITH NARELLE 27<br />
FUNDRAISING NEWS 28<br />
STRAY CATS THEATRE COMPANY PRESENTED<br />
SHREK THE MUSICAL 29<br />
SPEECH PATHOLOGY WEEK <strong>2018</strong> 29<br />
VOLUNTEERING 30-31<br />
ARTSY CRAFTY WEDNESDAY AT WILSON 31<br />
SOUTHSIDE OUTREACH FRIDAY GROUP 31<br />
ROCKINGHAM TUESDAY OUTREACH GROUP 32<br />
GREAT SOUTHERN REGIONAL NEWS ROUNDUP 32<br />
SOUTH WEST REGIONAL NEWS ROUNDUP 33<br />
TREENDALE GARDENS 33<br />
TREENDALE RESPITE AND A HAVEN AWAY FROM HOME 34<br />
MSWA BULLETIN SPRING <strong>2018</strong> | 3
This brave new world of the NDIS, however, has been a long<br />
time in the making. In April 1995 the then Federal Minister for<br />
Health in the Keating Government, Dr Carmen Lawrence (also<br />
the first woman to become the Premier of Western Australia,<br />
1990 to 1993), visits the Society to meet the Board and<br />
discuss concerns it has about future Commonwealth funding.<br />
In particular, the Board wants to discuss the imbalance in<br />
the funding agreement with the Commonwealth, where the<br />
Society is contributing seventy seven percent for the provision<br />
of services to Members, by fundraising.<br />
For years the Society had been largely excluded from applying<br />
for Commonwealth funding because those organisations on<br />
the inside argued that the Society was a so-called ‘single<br />
disability’ organisation, the mud stuck, and the Society<br />
cannot shake this concocted historical tag.<br />
The Society counters such humbug by flying its multiple<br />
sclerosis (MS) credentials like a battle flag, to become a very<br />
successful independently-minded fundraiser. However, at<br />
that particular time in 1995, because the next battle to have<br />
Beterferon (treatment) made freely available is yet to be won,<br />
funding to enable people with MS to live at home has become a<br />
heart-rending, calamitous problem. There are cases of people<br />
mortgaging their homes to raise the $100,000 necessary to<br />
purchase this first disease modifying treatment ever offered.<br />
Dr Lawrence informs the Society that the Home and<br />
Community Care guidelines are under review, explaining that<br />
the Commonwealth is planning to introduce legislation to<br />
provide funding to the individual in need of home care and<br />
allow that individual to choose their service provider. This will<br />
include people with MS.<br />
It is now history that the following year, the Keating-led Labor<br />
government was defeated by the Howard Liberal National<br />
Coalition Government. It would be another seventeen years<br />
before the NDIS Bill was introduced into Parliament in<br />
November 2012 and enacted the following year.<br />
Today people with disabilities, MS and similar neurological<br />
conditions at long last have the ability to access funding in<br />
a more timely and equitable fashion. They also have the<br />
amount adjusted to meet changed need and they can choose<br />
their own provider, as the NDIS is rolled out throughout<br />
Western Australia.<br />
The big losers however, are people aged 65 years and over.<br />
It is these people who have been shuffled off into a grossly<br />
inadequate Aged Care System where thirty percent of the<br />
package is immediately recouped by the provider, and the<br />
hourly rate of service is exorbitant. If that person happens to<br />
be high-care, then the care cost doubles. It is little short of a<br />
disgrace that the disabled elderly should be even thought of<br />
in such a manner.<br />
MSWA is not currently an approved Aged Care Provider, but<br />
once again it is left to us to pick up the broken pieces of an<br />
ill-thought-out policy so as to keep people with MS who do<br />
not qualify for the NDIS, living at home.<br />
On behalf of the Editorial Committee I would like to thank<br />
you for your forbearance as MSWA follows its five-year<br />
plan and reassembles itself in readiness for the future.<br />
“Change is everywhere … today it is fine; tomorrow we<br />
know Summer is coming.”<br />
Do you want to receive<br />
the <strong>Bulletin</strong> online?<br />
Want monthly information updates?<br />
Register your email address today to start receiving our<br />
monthly Vitality e-newsletter or 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 | MSWA BULLETIN SPRING <strong>2018</strong>
From the desk of the CEO<br />
MARCUS STAFFORD<br />
A clear vision backed by definite plans, delivers success.<br />
It is always pleasing to note the delivery of a record-breaking<br />
year for MSWA, but perhaps most satisfying is the posting of<br />
those records within the context of challenging times.<br />
The 2017-<strong>2018</strong> year saw MSWA’s gross revenue reach<br />
the highest in our history, and our balance sheet further<br />
strengthened. We stand alone in Western Australia as the<br />
dominant generator of our own funds, with the majority of our<br />
revenue coming from our own rich and diversified activities<br />
within both the retail and commercial market.<br />
MSWA led the nation in its research contribution, lifting to<br />
a record-breaking $3 million for the year, with a thoughtful<br />
balance of funding allocated within Western Australia,<br />
Australia and internationally.<br />
Apart from the regular and ongoing support of a multitude of<br />
multiple sclerosis (MS) research projects, this includes strong<br />
contributions to MS Research Australia, the International<br />
Alliance for research into progressive MS, and the ongoing<br />
support of symbiotic research into other neurological conditions.<br />
Our investment into research increases the overall knowledge,<br />
and ultimately benefits all of our Members and Clients living<br />
with a neurological condition. MSWA’s continued leadership<br />
in Australia is seeing advances in neurological research that<br />
is making a real difference to people’s lives. And in keeping<br />
with this focus, we are pleased to announce that we have<br />
made a significant contribution to Motor Neurone Disease<br />
research this year.<br />
The number and range of services offered to people with<br />
MS and other neurological conditions was extended further<br />
during the year, along with the number of locations within<br />
both the Perth metropolitan and rural areas.<br />
Our cohort of people receiving services in 2017-<strong>2018</strong><br />
showed 65% having MS and 35% having other neurological<br />
conditions. That balance is expected to become 60%-40% by<br />
the end of <strong>2018</strong>-19.<br />
The annual Member survey had a total of 753 responses this<br />
year, and once again, the respondents resoundingly expressed<br />
appreciation and satisfaction for MSWA. I am pleased to say<br />
that we consistently get outstanding positive results from our<br />
survey every year, and we will continue to work to place ‘our<br />
Customer’ at the centre of our activities.<br />
Our strategy to extend scale to counteract the cashflow<br />
uncertainties of the National Disability Insurance Scheme<br />
(NDIS) environment, and to provide sustained support for<br />
people who are not eligible to join the scheme, has been<br />
successful. That success has given peace of mind and surety<br />
to all people we serve, including people aged over 65 with<br />
MS, and those who are newly diagnosed or only requiring<br />
low support.<br />
Meanwhile, within the organisation’s footprint developments,<br />
our new Supported Accommodation and Services Facility in<br />
Butler is coming along nicely, and the site is currently at lockup<br />
stage. Our Mega Home Lottery launched in early August<br />
and tickets are selling fast which is very pleasing, but perhaps<br />
unsurprising, with a $2.7 million grand prize package.<br />
Our dedicated events team delivered another fantastic Annual<br />
Dinner and Auction and it was great to see both familiar<br />
and new faces. Always thinking ahead, the team are now<br />
preparing for Ocean Ride in November.<br />
So, we bask in the glory of an outstanding year for<br />
just a moment, but now focus on the year ahead with<br />
the intention of delivering successful results for our<br />
Members and Clients. Onwards and upwards!<br />
MSWA BULLETIN SPRING <strong>2018</strong> | 5
A message from the General Manager –<br />
Member and Client Services<br />
SUE SHAPLAND RN, BN, Cert MS Nursing, MSCN<br />
“What lies behind you and what lies in front of you, pales in comparison to what lies inside of you.”<br />
Ralph Waldo Emerson.<br />
This quote supports that belief, and we often see living<br />
examples, that everyone has an inner strength that may not<br />
become evident until life’s challenges come along. I have met<br />
so many inspirational Members in my time here at MSWA<br />
and their stories are varied, but they have all risen to the<br />
challenge of being diagnosed with multiple sclerosis (MS) and<br />
the ongoing changes that can bring.<br />
What a difference a decade or two can make; the introduction<br />
of new therapies over the years has and will continue to make<br />
a real difference in people’s MS journey. We now have 12<br />
therapies and thankfully some in trial for progressive MS, and<br />
perhaps the promise of some treatments to repair damaged<br />
myelin. The ongoing research really shows just how complex<br />
MS is; over 200 genes are now implicated, and we know<br />
more about other factors that contribute to the cause but<br />
there’s still more we don’t know.<br />
MSWA is very proud to contribute funds to support MS<br />
research efforts here in WA, nationally and internationally.<br />
Our annual contribution continues to grow – it’s $3 million<br />
this year! We also now support research into other<br />
neurological conditions.<br />
Of course, the financial year has just ticked over and we are<br />
busy finalising the reports.<br />
The year ahead will be busier and even more exciting on many<br />
fronts. Our new Butler Supported Accommodation and High<br />
Support Facility looks amazing. The building is on track to<br />
open in January next year, and it certainly won’t disappoint.<br />
We are also currently fitting out premises in Kelmscott bringing<br />
services closer to home for those in the eastern corridor. Work<br />
is continuing, negotiating the Busselton premises with delays<br />
beyond our control and we are also doing preparatory work<br />
on the Albany premises.<br />
The National Disability Insurance Scheme (NDIS) is expanding<br />
across WA, with the roll out of Fremantle, Melville and South<br />
Perth local Government areas from July 1. Our NDIS team are<br />
busy working with our Members to prepare them for planning<br />
meetings and we are holding seminars as well as one to one<br />
appointments. If you need any information about the NDIS<br />
please contact our team, see the update in this edition.<br />
The next big roll out will include the remaining southwest<br />
areas around Bunbury, the City of Joondalup and the City of<br />
Wanneroo from October 1, <strong>2018</strong>. If you know anyone under<br />
65 living with a neurological condition who wants information<br />
about the NDIS, please refer them to our team.<br />
As you may have heard, Wilson has had a massive and well<br />
overdue facelift! This has been a major undertaking and we<br />
have had many months of upheaval and relocation of teams<br />
and functions; but we had our eyes on the prize and now<br />
we can enjoy our great building and new décor. I would like<br />
to sincerely thank the wonderful staff who have been very<br />
tolerant of the ongoing movements and noise AND of course<br />
the Members who have been dislocated from Wilson to Como<br />
where we held the Outreach Group for many months. The<br />
larger gym and new massage rooms have been well received.<br />
I hope not too many Members were affected by the winter<br />
flu season, there have been some quite virulent infections<br />
around and the weather hasn’t helped.<br />
Please remember your Member Services Team are<br />
here to assist you with accessing quality advice on<br />
many aspects of MS and up to date information on<br />
treatments and research. Please don’t hesitate to<br />
make contact through reception on 9365 4888 or<br />
Get-in-touch@mswa.org.au.<br />
We hope you enjoy this <strong>Bulletin</strong> and find the articles of use.<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 />
6 | MSWA BULLETIN SPRING <strong>2018</strong>
MS RESEARCH ROUND UP<br />
SHARING RESEARCH UPDATES<br />
FROM AROUND THE WORLD<br />
SUE SHAPLAND RN, BN, Cert MS Nursing, MSCN<br />
From the UK MS TRUST<br />
Relapses and brain fog<br />
Giedraitiene N, et al. Cognition during and after multiple<br />
sclerosis relapse as assessed with the brief international<br />
cognitive assessment for multiple sclerosis. Sci Rep. <strong>2018</strong><br />
May 25;8(1):8169.<br />
Many people with MS talk about ‘brain fog’ or ‘cog fog’ when<br />
describing the feeling that their thinking processes are not as<br />
organised or reliable as before. This study assessed memory<br />
and thinking (cognition) to see how it changed during and<br />
after a relapse.<br />
For this study, 60 people experiencing an MS relapse, 30 with<br />
stable MS and 30 without MS took part in this study. Cognition<br />
was assessed using BICAMS, a quick and easy set of tests<br />
measuring different aspects of thinking and memory. For<br />
those experiencing a relapse, the tests were applied during<br />
the relapse, and then one and three months after. The group<br />
with stable MS and the group without were tested just once.<br />
All test scores were lower in people with MS, both relapsing and<br />
stable, vs those without MS. The test measuring information<br />
processing speed was worse in relapsing MS than in stable<br />
MS. Tests assessing visual and verbal memory were not<br />
significantly different for relapsing MS and stable MS. Within<br />
the relapsing group, scores improved one month after relapse.<br />
The study confirms relapses can impact on cognition, with<br />
information processing speed most affected; thus, it’s wise to<br />
avoid making big decisions during a relapse. The good news<br />
is that processing speed improves quite quickly and is back to<br />
levels typical for people with MS after just one month.<br />
The researchers commented that cognition is not often<br />
monitored during clinic appointments and recommend<br />
BICAMS as a quick and effective way to do this, particularly<br />
for those having a relapse.<br />
Intensive physiotherapy technique improves hand and<br />
arm use.<br />
Mark VW et al. Phase II randomized controlled trial of<br />
constraint-induced movement therapy in multiple sclerosis.<br />
Part 1: effects on real-world function. Neurorehabil Neural<br />
Repair. <strong>2018</strong> Mar;32(3):223-232.<br />
Constraint-induced movement therapy (CIMT) is a form of<br />
intensive physiotherapy originally developed to help people<br />
with one arm weaker after a stroke. It involves restricting the<br />
use of the stronger arm and intensively training the weaker<br />
arm and providing coaching for use in everyday life.<br />
In this small study, researchers tested this technique with<br />
people with MS and looked for MRI evidence of changes to brain<br />
structures. 20 people with MS with significant weakness in one<br />
arm received either CIMT or a package of complementary and<br />
alternative therapies (CAM). Both groups received 3.5 hours<br />
of direct contact therapy daily for 10 consecutive weekdays.<br />
Eight people in each group completed treatment and returned<br />
for follow-up assessment one year later.<br />
Advanced MRI techniques were used to compare brain<br />
structures in the two groups before and after treatment.<br />
The CIMT group showed greater improvement in the everyday<br />
use of their weaker arm than the CAM group and the<br />
improvement was retained at the one-year follow-up.<br />
Both groups showed improvements in speed and dexterity<br />
of their weaker arm immediately after treatment courses. At<br />
one-year follow-up, speed and dexterity of the weaker arm<br />
had continued to improve in the CIMT group but was returning<br />
to pre-treatment levels in the CAM group.<br />
MRI results suggested that in the CIMT group there were<br />
measurable changes in brain structures at the end of the ten<br />
days of treatment; this was not seen in the CAM group.<br />
The researchers conclude that the results warrant further<br />
studies with greater numbers and longer follow-up times.<br />
They intend to evaluate CIMT on people with MS with mobility.<br />
Continued over<br />
MSWA BULLETIN SPRING <strong>2018</strong> | 7
Read more at:<br />
mswa.org.au/researchupdate<br />
From the Barts Blog.<br />
EBV in the brain<br />
Epstein Barr Virus (EBV) is a herpes virus spread by saliva and<br />
infects around 95% of us during our lifetimes. In many people<br />
EBV infection does not cause prominent symptoms – it may<br />
cause a ‘flu-like’ illness which gets better on its own, or it<br />
may go completely unnoticed.<br />
Some people infected with EBV experience the more severe<br />
illness – glandular fever or infectious mononucleosis – with<br />
fatigue, sore throat, enlarged lymph nodes, fevers, and a mild<br />
hepatitis (liver inflammation).<br />
There is lots of evidence to suggest a link between EBV<br />
infection and the risk of developing MS:<br />
• PwMS have high levels of antibodies, suggesting a specific<br />
immune response against EBV<br />
• Slightly higher rates of EBV infection in pwMS; 100% of<br />
pwMS are infected vs 95% of the general population<br />
• Increased risk of developing MS after glandular fever; 2.5x<br />
more likely<br />
• The detection of EBV infection in the brains of pwMS<br />
The hypothesis that EBV infection is an important step<br />
in developing MS makes sense. We know EBV evades the<br />
immune system by infecting B cells, driving them towards<br />
dormancy, and then promoting their long-term survival.<br />
EBV has an ingenious arsenal of tricks to promote its own<br />
survival by fashioning a long-term niche for itself inside B<br />
cells. This dormant period is termed ‘latent EBV infection.’<br />
A minority of EBV-infected cells will enter the ‘lytic phase’ of<br />
infection, in which the virus rapidly replicates, kills the host<br />
cells, and is shed to infect other cells. Recent data suggests<br />
that B cells are key drivers of the disease, any factor which<br />
promotes survival of B cells and hijacks the normal pathways<br />
of B cell maturation could conceivably predispose people to<br />
developing the disease.<br />
Whether EBV is present in the brains of people with MS has<br />
been slightly controversial – some people have said yes, and<br />
others have been unable to replicate those results.<br />
A study used a combination of biopsy and post-mortem brain<br />
tissue samples to see whether EBV-infected B cells could be<br />
detected in the brain; samples came from 17 pwMS and nine<br />
controls without neurological diseases.<br />
Latent EBV infection was detected using a marker called<br />
Latent Membrane Protein 1 (LMP1), and lytic infection was<br />
detected using a marker called BZLF1. LMP1 was detected<br />
in chronic lesions both with and without active inflammation.<br />
Importantly, LMP1 was also present in the brains of healthy<br />
individuals. BZLF1 was present in both control brains and<br />
brains from pwMS. Interestingly, BZLF1 was not present in<br />
chronic active lesions – this is surprising and implies that<br />
lytic infection is present in healthy brains, in chronic inactive<br />
lesions, but not in lesions with acute inflammation.<br />
The blog comments that this paper does not answer the<br />
question it set out to answer and they are unsure how to<br />
interpret these results. EBV-infected B cells appear to be<br />
present in both control and ‘MS’ brains, and may be slightly<br />
more common in MS.<br />
The best evidence to date does suggest that EBV is present<br />
in both MS and control brains, but is more common in pwMS<br />
(90% vs 24%).<br />
Clearly, the presence of EBV-infected B cells in the brain is<br />
not sufficient to drive disease activity. Further work needs to<br />
be done to understand why some people are perfectly healthy<br />
despite having EBV in their brain, whereas others go on to<br />
develop MS. Deeper understanding of how EBV is linked to MS<br />
is an essential first step towards developing safe treatments<br />
(and vaccines) which target EBV. EBV-targeted treatments are<br />
in early stages of development.<br />
Spinal cord volume loss: A marker of disease progression<br />
in multiple sclerosis.<br />
Tsagkas C, Magon S, Gaetano L, Pezold S, Naegelin Y,<br />
Amann M, Stippich C, Cattin P, Wuerfel J, Bieri O, Sprenger<br />
T, Kappos L, Parmar K.Neurology. <strong>2018</strong> Jun 27. pii: 10.1212/<br />
WNL.0000000000005853.<br />
Cross-sectional studies show that spinal cord volume (SCV)<br />
loss is related to disease severity in MS. However, long-term<br />
data is lacking. This study aimed to evaluate SCV loss as a<br />
biomarker of disease progression in comparison to other MRI<br />
measurements in a large cohort of patients with relapseonset<br />
MS with a six -year follow-up.<br />
The upper cervical SCV, total brain volume, and the brain T2<br />
lesion volume were measured annually in 231 patients with<br />
MS (180 RRMS and 51 SPMS) over six years using three<br />
-dimensional, T1-weighted, MRI images. Expanded Disability<br />
Status Scale (EDSS) score and relapses were recorded at<br />
every follow-up.<br />
8 | MSWA BULLETIN SPRING <strong>2018</strong>
Patients with SPMS had lower baseline SCV (p < 0.01) but<br />
no accelerated SCV loss compared to those with RRMS.<br />
Clinical relapses were found to predict SCV loss over time<br />
in RRMS. Furthermore, SCV loss, but not total brain volume<br />
and T2 lesion volume, was a strong predictor of EDSS score<br />
worsening over time.<br />
The blog commented that loss of nerves in the spinal cord is<br />
a prediction of whether you will lose leg function. This is not<br />
surprising as the spinal cord is the nervous highway from your<br />
brain to your legs.<br />
Every one percent increase of the annual SCV loss rate<br />
was associated with an extra 28% risk increase of disease<br />
progression in the following year in both groups.<br />
The researchers commented that SCV loss over time relates to<br />
the number of clinical relapses in RRMS, but overall does not<br />
differ between RRMS and SPMS. SCV proved to be a strong<br />
predictor of physical disability and disease progression,<br />
indicating that SCV may be a suitable marker for monitoring<br />
disease activity and severity.<br />
From MS Research Australia<br />
Australians Develop Promising Technique for Myelin Repair<br />
Repairing damaged myelin is essential to prevent the disability<br />
progression in MS and techniques to promote repair are a<br />
huge unmet need in MS.<br />
Melbourne-based researchers, funded by MS Research<br />
Australia, have developed a synthetic molecule called TDP6<br />
that mimics a natural brain protein. Giving TDP6 as a treatment<br />
after myelin damage increased the number of myelinated<br />
nerve fibres and myelin thickness, indicating myelin repair.<br />
It is hoped that this could lead to new therapies to repair<br />
damaged myelin in MS.<br />
The ability to repair damage in MS is one of the most pressing<br />
goals of MS research. The myelin coating around nerve fibres<br />
is damaged by the immune system, exposing the nerve and<br />
interrupting the nerve signals travelling between the brain<br />
and the body. Current treatments for RRMS aim to reduce the<br />
damage caused by relapses and inflammation, but treatments<br />
to repair damage are not currently available.<br />
Myelin can be naturally repaired, however this repair is<br />
often incomplete and eventually fails completely, leading to<br />
progression disability. Stimulating and enhancing the natural<br />
repair processes is a goal for many MS researchers.<br />
Research conducted by Dr Jessica Fletcher, working with Dr<br />
Simon Murray, Dr Junhua Xiao, and Assoc Prof Richard Hughes,<br />
led to the development of a synthetic protein, which mimics a<br />
naturally occurring brain protein to promote myelin repair.<br />
Given as a treatment after myelin is damaged, TDP6 increased<br />
the number of mature myelin-producing cells in the brain and<br />
repaired myelin; in that the number of myelinated nerve fibres<br />
increased and myelin thickness improved after the synthetic<br />
protein was given.<br />
This work has shown that this synthetic molecule can repair<br />
myelin in a biological model of MS. While more laboratory<br />
work is needed to further develop the treatment it’s hoped this<br />
molecule could form the basis of a new therapy for repairing<br />
existing damage and provide treatment options for people in<br />
the progressive phase of their MS.<br />
Read more at: https://msra.org.au/news/develop-promisingmyelin-repair<br />
Modern MS Therapies Improve Employment Outcomes<br />
New research, involving 874 people on disease-modifying<br />
therapies in the previous five years, showed that more<br />
effective disease-modifying therapies are associated with<br />
increases in the amount of work, work attendance and work<br />
productivity.<br />
Being employed has benefits beyond purely financial – it can<br />
improve quality of life, provide social interaction and give us<br />
a sense of purpose.<br />
MS studies in previous decades showed that pwMS were<br />
much more likely to fall out of employment than people with<br />
other chronic conditions and the general population. The<br />
financial impact of reduced employment for people with MS<br />
places a substantial burden on individuals, families and the<br />
wider community.<br />
Research published in 2016 by Dr Pieter Van Dijk at Monash<br />
University, and Assoc Prof Ingrid van der Mei, using data from<br />
MSRA’s Australian MS Longitudinal Study (AMSLS), showed<br />
the gap in employment rates between pwMS and the general<br />
population is closing.<br />
The team at the Menzies Institute for Medical Research delved<br />
deeper into the data from the AMSLS to explore whether the<br />
use of disease-modifying therapies has played a role in this<br />
improvement in employment retention for pwMS.<br />
This latest study showed that pwMS on high-efficacy diseasemodifying<br />
therapies were two to three times more likely to<br />
report improved employment outcomes than those on the<br />
lower-efficacy first generation MS treatments.<br />
This study indicates the newer generation MS therapies are<br />
having a positive effect on people’s quality of life, and allowing<br />
people to maintain their health, keeping them well enough to<br />
stay fully active and productively employed.<br />
Many personal factors are taken into consideration when<br />
choosing a medication, so it’s important to discuss your<br />
therapy options with your neurologist.<br />
Read more at: https://msra.org.au/news/therapies-keepingpeople-employed<br />
MSWA BULLETIN SPRING <strong>2018</strong> | 9
MSWA’S RECORD $3 MILLION<br />
INVESTMENT INTO RESEARCH<br />
MSWA BRAND AND COMMUNICATIONS<br />
MSWA is the largest funder of research into multiple sclerosis<br />
(MS) in Australia, and the total contribution to neurological<br />
research is nearly $14 million over the last 11 years. This may<br />
come as a surprise to some, but not the loyal people who<br />
continually support MSWA’s fundraising initiatives.<br />
For the thousands of Western Australians living with a<br />
neurological condition the latest commitment of a record<br />
$3 million to research in the last financial year, offers hope<br />
and relief.<br />
The funding will be allocated across a number of institutions<br />
this year, including $1 million to MS Research Australia and<br />
$500,000 to the International Progressive MS Alliance.<br />
MSWA CEO Marcus Stafford AM said, “this year’s<br />
unprecedented investment was only made possible by the<br />
people of Western Australia’s ongoing support.”<br />
“We’re committed to improving the quality of life for people<br />
with MS and other neurological conditions, and pleasingly,<br />
we have been able to increase year-on-year the amount of<br />
money we’ve invested into research and spent on providing<br />
support, services and accommodation across the State.<br />
And, it’s something we want to continue to do for many years<br />
to come.”<br />
For a fourth year in a row, MSWA has set aside substantial<br />
amounts of money for local research and one project to receive<br />
funding from MSWA, is Professor Allan Kermode, Head of<br />
Demyelinating Diseases Research at the Perron Institute.<br />
His research will focus on the potential of neurofilament light<br />
(NfL) to be used as a biomarker of MS activity, using a simple<br />
blood test.<br />
Currently, clinicians use methods such as MRIs or the<br />
monitoring of clinical symptoms to assess whether a treatment<br />
for MS is effective, or if the condition is progressing. However,<br />
these methods are expensive or time-consuming.<br />
“NfL is a nerve protein that is a component of nerve cells,”<br />
said Professor Kermode. “When nerve cells die, the presence<br />
of NfL can be detected in the blood stream. What we’re doing<br />
is analysing NfL levels in patients’ blood to work out whether<br />
it’s a useful biomarker as a predictor of MS activity and<br />
progression.”<br />
Professor Kermode said the progression of MS varies widely<br />
from one person to another and so does their response to<br />
various treatments.<br />
“Specific blood tests will not only permit more timely and<br />
precise assessment of the response of MS to treatment,<br />
as well as help guide personalised pharmacotherapy, but<br />
they will also accelerate the development of new therapies,<br />
especially those that may arrest clinical progression,”<br />
Professor Kermode said.<br />
“In a world-first, biomarker testing for NfL will be carried<br />
out in people with Clinically Isolated Syndrome (CIS) who<br />
have undergone narrowband UVB therapy,” Professor<br />
Kermode added.<br />
“People with CIS have experienced a first episode of<br />
neurological symptoms that could progress to MS. As part of<br />
this research, one group has been treated with narrowband<br />
UVB phototherapy and the other hasn’t. The NfL levels of each<br />
group will be compared to determine the effect of the UVB<br />
phototherapy on conversion to full MS.<br />
“The funding from MSWA will enable the Demyelinating<br />
Diseases Research program to advance a range of initiatives<br />
that would otherwise be beyond our reach.”<br />
The money will also be invested in a research project that<br />
evaluates the molecular and immunological aspects of MS,<br />
employing a senior research fellow and MS nurse, and<br />
migrating data onto an Australia-wide MSBase platform.<br />
Mr Stafford said, “I would like to thank everyone who made<br />
a donation, took part in one of our events, or bought a ticket<br />
in the Mega Home Lottery. Because of you, we’ve been able<br />
to support the Perron Institute and other brilliant medical<br />
research organisations that offer hope to people living with<br />
MS and other neurological conditions.”<br />
As well as Professor Kermode’s research, MSWA’s recordbreaking<br />
funding will be allocated across a number of institutions<br />
this year, including $1 million to MS Research Australia and<br />
$500,000 to the International Progressive MS Alliance.<br />
Over the next couple of months, there will be more exciting<br />
research announcements to come.<br />
10 | MSWA BULLETIN SPRING <strong>2018</strong>
THE NDIS CONTINUES ITS<br />
RAPID EXPANSION IN PERTH<br />
NIGEL CAREY MANAGER, MSWA NDIS BUSINESS DEVELOPMENT<br />
On July 1, the National Disability Insurance Scheme (NDIS)<br />
expanded to include the new geographical areas of Fremantle,<br />
the City of Melville and the City of South Perth.<br />
In anticipation, the NDIS team hosted a series of information<br />
sessions to explain how our Members can get started with<br />
the NDIS and what supports and services are available.<br />
Attendance has been strong, and we are now actively<br />
engaging with over 70 Members from these areas, as they<br />
start their NDIS journey.<br />
In fact, NDIS eligibility for some of these Members has<br />
already been approved and they are now waiting for their first<br />
planning sessions with the NDIS.<br />
The NDIS team is still very keen to meet and support you<br />
if you live in Fremantle, the City of Melville and the City of<br />
South Perth and we haven’t yet spoken with you. We would<br />
be happy to have an individual discussion with you in your<br />
home, have coffee with you in a neighbourhood café, or one<br />
of our facilities. The coffee and cake are on us!<br />
The next NDIS areas to be launched will be the City of<br />
Joondalup, City of Wanneroo and City of Bunbury and<br />
surrounding shires. These will commence from October 1.<br />
It should be noted that the City of Joondalup and City of<br />
Wanneroo cover an extremely wide geographical area, so you<br />
may well be included if you live in the northern suburbs!<br />
We have over 500 Members on our database for these areas<br />
and once again we will be actively contacting you to assist<br />
in understanding the process and your possible transition to<br />
the NDIS.<br />
On another topic, we have been contacted by many Members<br />
who are transferring from WA NDIS plans to Commonwealth<br />
NDIS plans.<br />
The transfer process is proving to be quite challenging, so<br />
we do encourage you to contact us when you are asked to<br />
transfer your plan. We can assist by checking your existing<br />
plan and planning for a new one, as the processes are slightly<br />
different between the two.<br />
The future schedule for transfers is as follows:<br />
August – October <strong>2018</strong>: Members who live in the Cockburn /<br />
Kwinana areas will be asked to transfer to the NDIS.<br />
September – December <strong>2018</strong>: Members who live in the<br />
Lower South West, Busselton and surrounds, will be asked to<br />
transfer to the NDIS<br />
We are pleased to announce a Lucky Draw to celebrate<br />
the expansion of the NDIS!<br />
Here’s your chance to win a $100 shopping voucher!<br />
Just answer the following three questions about the NDIS:<br />
• What do the initials NDIS stand for?<br />
• Name the three new NDIS areas that commenced on July 1<br />
• Name one Member of the MSWA NDIS team<br />
Email your responses to Mark Douglas at<br />
mark.douglas@mswa.org.au<br />
However, be quick!<br />
Only the first three correct replies can win a voucher!<br />
Finally, do have a chat with our friendly NDIS team if you<br />
require any further information about the NDIS.<br />
The NDIS team members at MSWA 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 />
MSWA BULLETIN SPRING <strong>2018</strong> | 11
WITHIN A<br />
FAMILY SYSTEM<br />
ALYSON YEARSLEY, MSWA COUNSELLOR<br />
“In every conceivable manner, the family is link to our past, bridge to our future.”<br />
Alex Haley.<br />
In my years of working with families, I have learnt the<br />
importance of keeping the entire family in mind when<br />
counselling individuals, couples or the family as a whole.<br />
When one member is suffering, it will most likely impact the<br />
entire unit. When a family member receives a diagnosis of<br />
MS or other chronic or terminal illness, it has the potential to<br />
affect all members and can often change the course of the<br />
family story.<br />
The best way to think of the family affected by illness, is of<br />
a tapestry altered by a change in its pattern. Sarah Burton<br />
MacLeod MD from Canada describes the family as an<br />
interactive system:<br />
• families contain and interact with many subsystems based<br />
on relationships<br />
• a change with one of the members of the family will<br />
influence the entire system<br />
• emotional interdependence has evolved to promote<br />
cooperation to protect their members (Mehta et.al., 2009)<br />
The predictability of the family surviving or managing an<br />
illness can be found in how resilient or healthy the family is to<br />
start with. Questions to ask may include:<br />
• how has the family adapted to change in the past?<br />
• how supportive are members of each other?<br />
• what complications are getting in the way?<br />
Complex family systems with multiple challenges such as<br />
economic, mental health, family conflict or multiple health<br />
issues may complicate navigation through a new family<br />
health challenge. Stresses within the system may need to be<br />
addressed before anything else will change. Often the core<br />
strengths of the family based on love, caring and shared<br />
family values will motivate members to go the extra mile to<br />
do what is needed to promote positive change. Sometimes<br />
this shared challenge will bring the family together.<br />
Strategies to help families cope can include:<br />
• improving communication within the family<br />
• educating family members on health issues and what to expect<br />
• creating awareness of how each member is affected<br />
• learning practical skills to decrease stress and promote a<br />
healthy lifestyle<br />
• accessing professional help for members of family that are<br />
most affected<br />
Counselling individuals who are dealing with a chronic illness<br />
can have a positive impact on the entire family. When a<br />
Member is feeling supported and heard, stress levels can<br />
decrease. Most of our counselling at MSWA is on an individual<br />
level but can incorporate a family systems approach or<br />
family inclusiveness. This can lead to cooperation within<br />
the system, increased resilience and shared understanding.<br />
What if someone is isolated or has an unsupportive family?<br />
Counselling can often bridge the gap or to help the client<br />
build a larger support network. MSWA Groups for Members<br />
or carers can expand this even further, as meeting others<br />
affected by similar challenges can help someone feel more<br />
connected or bring about change on a community level.<br />
What I have learned learnt from my experience working with<br />
families is that there is an emotional bond between Members<br />
based on the history of the family and the need for the family<br />
unit to survive. Most families I meet love talking about their<br />
family, even the dark side of the story over generations. The<br />
past traumas, conflicts and challenges are noted as what<br />
made the family stronger or in some cases fall apart. Talking<br />
about the past can often uncover what may have contributed<br />
to family stress to begin with.<br />
Whether promoting positive change, companioning<br />
along a journey or supporting family during loss and<br />
grief, MSWA counsellors are here to help.<br />
References:<br />
The Family as the Unit of Care: Challenges & Rewards; Sarah<br />
Burton MacLeod, MDCCFP & Kim Crowe, BSW RSW<br />
Mehta, A., Cohen, S.R., & Chan, L.S. (2009). Palliative care:<br />
A need for a family systems approach. Palliative & Supportive<br />
Care, 7(2), 235-243<br />
12 | MSWA BULLETIN SPRING <strong>2018</strong>
WHEN CHANGE<br />
IS NOT A CHOICE<br />
KATH BUDZINSKA, MSWA COUNSELLOR<br />
We are told that change is inevitable and that may be so,<br />
but sometimes we have change forced upon us in a most<br />
unexpected manner that leaves no room for choice. I<br />
remember my then seven-year-old son having an “I’m not<br />
going to school today” moment, as he very unhappily got out<br />
of the car, he said to me with a big scowl “you always say<br />
we’ve got choices!”<br />
“Yes” I reply, “you can do this willingly or unwillingly.” When I<br />
relay this story, it is usually greeted with sympathetic laughter,<br />
because I think we can all relate to his frustration.<br />
Some research suggests that there are phases we go<br />
through on our way to a different life. In the beginning we<br />
may not recognise a need to change or be unaware that<br />
change is about to be put upon us. This is regarded as<br />
the Precontemplation Phase. The Contemplation Phase is<br />
when we begin to recognise a possible change, then comes<br />
Preparation, Action and Maintenance. That is, if the change<br />
was a personal choice.<br />
When change is thrust upon us, there is often little or no<br />
time for the luxury of contemplation before action is required.<br />
However, there are still some things, such as those listed<br />
below, which people may find helpful. These are responses<br />
where we potentially have a choice, at any given time, of<br />
taking an action or not, according to whether we perceive<br />
that action as making matters better or worse.<br />
Staying focused in the present and working with what is<br />
right in front of us at any given moment, is helpful in not<br />
becoming overwhelmed. However, a broader awareness is<br />
also helpful in planning ‘where to from here.’ The following<br />
suggestions may be of some help when facing a situation<br />
beyond our control.<br />
1) Knowledge. Do your homework; what do I need to know<br />
right now? Do I need to have a witness or a guide to help<br />
me understand the situation?<br />
2) Emotions. Honour our feelings, how do I feel right now?<br />
Remember feelings are not right or wrong – they just are.<br />
3) Situation. Is there something going on around me that I<br />
am a part of? Can I make a difference?<br />
4) Self-awareness. Am I focused on reality or am I<br />
distracting myself with fantasy and illusion? What do I<br />
need right now to be able to stay in reality without being<br />
overwhelmed?<br />
5) Community-awareness. What outside supports are<br />
available to me? Who best can help me with access<br />
to support?<br />
6) Fear. Sometimes the only way to deal with things is<br />
keep moving through them (maybe at an angle – like<br />
swimming through a rip – just don’t stop swimming).<br />
Doing ‘the next indicated thing’ or ‘forward movement’<br />
can be aided by skills such as meditation and mindfulness.<br />
There may be times that we fall flat on our face but that is<br />
still forward motion.<br />
7) Alternatives. What small thing can I do differently to<br />
simplify my life at this time? Am I getting enough sleep?<br />
8) Humility. People will want to help, and we need to let<br />
them. It’s good for all of us, sometimes being the giver<br />
and sometimes the recipient.<br />
9) Gratitude. Acknowledge the good in our life. The good<br />
fortune to have food and shelter.<br />
10) Set the scene. Create the space of our desire. Make our<br />
environment work for us. Is it a time of quiet or a time of<br />
stimulus? Do we have a place that meets those needs<br />
and helps keep the balance?<br />
None of these tasks are set in concrete, they have their own<br />
pattern and their own time frames. Some things we can<br />
manage easily and simply, others maybe not, or not at this<br />
time. Sometimes we need to ask for help, whether we want<br />
to or not and sometimes it is more beneficial to get help from<br />
outside of family and friends.<br />
If you would like to talk freely and in confidence to<br />
someone who has skills in helping, please contact the<br />
Counselling Department at MSWA on 9365 4888.<br />
Reference:<br />
www.prochange.com/transtheoretical-model-of-behavior-change<br />
MSWA BULLETIN SPRING <strong>2018</strong> | 13
LONELINESS: THE HIDDEN<br />
COST OF CHRONIC ILLNESS<br />
LIESL MURDOCH, MSWA COUNSELLOR<br />
Loneliness is becoming an increasing problem in the 21st<br />
Century. Recent studies have shown that the effect of poor<br />
social connections and interactions can be harmful to our<br />
health. People who feel lonely, or have few social connections,<br />
have been linked with higher rates of early death comparable<br />
to well established disease states that are usually linked to<br />
poor diets, alcohol and cigarette use, not our social lives.<br />
(Valtorta NK, Kanaan M, Gilbody S, et al, 2016).<br />
We, as human beings are social creatures and do better in life<br />
when we feel connected to others. But in its absence, we feel<br />
a sense of isolation and separation from others, contributing<br />
to feelings of low mood, sadness and even depression.<br />
Ironically, we can feel lonely in a crowd. It is not necessarily<br />
being in the company of others that promotes connection. Our<br />
psychological happiness is enhanced when we feel heard,<br />
understood and bonded with others.<br />
So why is it that when the world is populated by the greatest<br />
number of inhabitants ever that we are experiencing this<br />
loneliness epidemic? It seems a strange thing.<br />
People cite various reasons for their lack of social connections<br />
– being time poor, too busy for friends as their lives are<br />
dominated by work and family commitments. Throw a chronic<br />
illness such as multiple sclerosis (MS) into the mix, where<br />
fatigue often compromises one’s ability to spend time in the<br />
company of others, and the issues of loneliness and a sense<br />
of isolation becomes compounded.<br />
Working as a counsellor with people living with MS, I encounter<br />
the subject of loneliness and social isolation frequently.<br />
Many of my clients disclose they miss the interaction and<br />
connection with others. They go on to say that prior to their<br />
illness they enjoyed a variety of social activities, and had a<br />
wide circle of friendships and acquaintances, but over time<br />
these activities were hindered by their fading physical ability.<br />
Friendships dwindled to infrequent contact or none. A hidden,<br />
and often unspoken and unrecognised cost, of chronic illness<br />
along with the feelings of grief and longing, accompany the<br />
loss of this important aspect of a person’s life. And hence<br />
some find themselves in a chair opposite me speaking and<br />
sharing their experience.<br />
So, what do I say? How do I respond?<br />
I share that what they are feeling is very typical – that many<br />
others living with a chronic illness have experienced something<br />
similar, that they are not alone in their experience of having<br />
to reduce their social participation and have people fade<br />
and disappear from their lives. I reassure them that it is not<br />
their fault but a consequence of unfortunate circumstances.<br />
And I will state that it is within their power to improve and<br />
rejuvenate their social connections by following a few tips.<br />
1. Change up how you see ‘social’ interaction – create<br />
ways of seeing people which conserve and protect your<br />
precious energy levels; instead of going out have your<br />
friends come to you.<br />
• Plan a movie night on your couch complete with popcorn,<br />
fizzy drink and choc tops.<br />
• Enjoy a carpet picnic under the stars in your back yard<br />
complete with your favourite take away meal.<br />
• Host a pyjama party where your friends visit in their<br />
pyjamas and play some old-fashioned games like<br />
Scrabble or Monopoly.<br />
2. Communicate with your friends – educate them about MS<br />
and fatigue. Many people are not aware that fatigue is such<br />
an issue for those living with MS. Having an understanding<br />
that it’s your low energy levels that make socialising<br />
a struggle, dispels the myth that you just don’t want to<br />
see them.<br />
14 | MSWA BULLETIN SPRING <strong>2018</strong>
3. Communicate using different mediums – send texts<br />
or Facebook messages, Skype or Facetime; or whichever<br />
app you prefer to use. Even go old school and send a card<br />
or letter in the snail mail! Small acts go a long way to<br />
maintaining connection.<br />
4. Talk to strangers – use everyday interactions to increase<br />
your social connectedness to the wider world. Strike up that<br />
conversation with the taxi driver, the checkout attendant,<br />
the person next to you at the doctor’s receptionist, it may<br />
not be a long-term relationship, but small interactions can<br />
build your confidence and promote wellbeing.<br />
5. Partake in one of the MSWA groups on offer. A variety<br />
of different groups, run by the various departments, are<br />
available to you to join and participate in. This will offer you<br />
the opportunity to meet with others in similar circumstances<br />
– so you already have something in common with them!<br />
Loneliness and social isolation is a problem, but it does<br />
not have to be yours. If you would like further support in<br />
this area of your life I encourage you to contact the MSWA<br />
counselling department and make an appointment to see<br />
one of the counsellors. Go on do it …. Life is for living<br />
and sharing it in the company of others!<br />
Reference: Valtorta NK, Kanaan M, Gilbody S, et al. Loneliness<br />
and social isolation as risk factors for coronary heart disease<br />
and stroke: systematic review and meta-analysis of longitudinal<br />
observational studies. Heart 2016; 102:1009-1016.<br />
HOW TO SUCCEED IN LIFE<br />
BY DR ANDREW E ONG<br />
As we go through life our spiritual self is accumulating a<br />
layer of little hurtful slights, heartaches, disappointments and<br />
betrayals which can cloud our good judgement in a cloak of<br />
mistrust, and in some cases, hopelessness. Let us call this<br />
the cosmic dust of life.<br />
Like all good housekeepers however, a regular dusting is<br />
necessary to make room for happiness and the better things<br />
that life has to offer. Of course, when you stir things up you are<br />
sure to get a little dust in your eyes which may hurt a little, you<br />
may feel sorry for yourself and even bring a tear to your eye.<br />
All of this is natural, for venting your emotions is an excellent<br />
way of ridding yourself of all this unwanted accumulated<br />
baggage. The trick is to let these tears wash away the dust<br />
and restore your vision so that you can get on with living. You<br />
need to know what you are doing, like what you are doing,<br />
and then believe in what you are doing.<br />
Begin your dusting by mastering some simple principles of<br />
human relations. Try never to criticise, condemn or complain.<br />
Learn instead to praise, encourage and look at the positive<br />
side of things before pointing out any problems or faults. Try<br />
to be sympathetic and tolerant. Be kind and understanding<br />
but above all, learn to forgive others and especially yourself.<br />
Give sincere and honest appreciation. Be enthusiastic. Don’t<br />
talk down to people. Instead find out their needs and become<br />
genuinely interested in them. Just be aware that the person<br />
you think is drowning might only be waving to a friend.<br />
Try not to win an argument, because it is rare to win over<br />
the other person’s ‘goodwill.’ Instead use tact, empathy,<br />
diplomacy and try to see the other person’s point of view.<br />
Then thank people for their interest, step back and allow<br />
some thinking time.<br />
These little things are at the core of human understanding.<br />
When you are right, be gracious. If you are wrong admit it<br />
immediately, and then you are in the position to maintain<br />
your self-control by making amends. You can remain calm,<br />
because you can only help people find the answer. You cannot<br />
teach a person anything other than to find themselves. In the<br />
end the best way to win an argument is to avoid it.<br />
Therefore learn to persuade people with gentleness. If<br />
you want to win friends let the other person do most of<br />
the talking. If you want cooperation you must first show<br />
the other person that their ideas are as important as your<br />
own. Finally, and you would think this is the easiest as<br />
every person has one; make a special effort to remember<br />
a person’s name.<br />
MSWA BULLETIN SPRING <strong>2018</strong> | 15
HOW CAN I BE MORE<br />
ASSERTIVE?<br />
EVE PARSONS, MSWA COUNSELLOR<br />
Assertiveness can help us in many areas of our lives. To<br />
be assertive means that we feel confident in personal<br />
interactions, whether responding to demands, asking for what<br />
we want, dealing with criticism, or setting our boundaries.<br />
Lots of people find that they can be assertive in one context,<br />
eg. at work, but find it much harder with family members or<br />
friends or doctors, or vice versa. They need ways to transfer<br />
these skills!<br />
Sometimes people believe that to be assertive means being<br />
aggressive, but this is a misunderstanding. Aggression is a<br />
sure-fire way to alienate people and create a bad reputation<br />
for yourself, even if you ultimately get the outcome you<br />
were seeking. Bullies are aggressive; whereas courteous,<br />
empathic, clear and firm people are assertive.<br />
Why might we be nervous about dealing with others<br />
assertively? Some of our fears can be:<br />
- Fear of being seen as uncaring<br />
- Fear of being called a bully<br />
- Fear of anger or retaliation by the other person<br />
- Fear of being labelled and opportunities blocked eg<br />
promotion at work<br />
- Fear of coming across as selfish, all about you<br />
Interestingly, due to these fears, many of us adopt a passive<br />
or manipulative approach to getting what we want, or to<br />
avoiding what we don’t want. You know the kind of friend who<br />
says vaguely that she’ll get back to you about an arrangement,<br />
then doesn’t? Or perhaps a family member who persuades<br />
you to do something for him by mentioning a favour he did<br />
for you? Being on the other side of these behaviours is just as<br />
unpleasant as being bullied, and most of us would rather be<br />
given a straight answer, or to give a straight answer, such as<br />
‘No, I can’t help you with that.’<br />
Assertiveness can help us in situations with friends, family,<br />
carers, colleagues, health professionals, sports and fitness<br />
buddies, fellow volunteers, retail workers, and members of<br />
our faith community. For example, if you feel you are being<br />
taken advantage of, or treated badly by someone, an easy<br />
formula to remember is:<br />
‘When you do …..X….. I feel …..Y…… so instead I’d prefer…<br />
…Z…..’<br />
Nobody can argue with how you feel even if they didn’t intend<br />
to make you feel that way! You’re the expert on how you feel.<br />
Here’s an example:<br />
“When you ask me to help with chores at 6 pm, I feel guilty<br />
that my fatigue stops me from helping. So instead, please<br />
would you ask me to help in the morning when I have more<br />
energy?”<br />
Another one might be:<br />
“When you say you’re broke and ask if I can lend you $100, I<br />
feel pressured to help you out even though I don’t have enough<br />
money either. So please don’t ask me again.”<br />
Of course, when we firm up our boundaries and state clearly<br />
what we want, the other person might resist hearing us, and<br />
here’s where the broken record technique comes in (for those<br />
of you who remember needles getting stuck on turntables)!<br />
Here, we empathise with the other person’s feelings and<br />
wishes, without getting sucked into fulfilling their request. We<br />
maintain our polite but firm position and repeat if necessary.<br />
It goes something like this:<br />
“Yes, I know you’re down to your last $10, but I’m still not able<br />
to lend you anything.”<br />
“I realise that you are struggling, but I’m sorry (only if you are<br />
sorry – this bit is not compulsory) I can’t help you out.”<br />
“I can hear how stressed out you are, and I know it’s hard, and<br />
I still can’t spare any cash for you.”<br />
Play your broken record until the message gets through!<br />
16 | MSWA BULLETIN SPRING <strong>2018</strong>
Why is this so hard for lots of us to do? In general, because we<br />
want to be known as kind, helpful people and not be accused<br />
of being ‘selfish.’ Let’s acknowledge that in our broken<br />
record technique:<br />
“I realise that to you I seem selfish right now, and I’m still your<br />
friend, but I don’t want to lend you money for the reasons I’ve<br />
already said, and that’s why I’m saying no.”<br />
Remember that if someone accuses you of being selfish or<br />
uncaring, it’s usually because they haven’t managed to get<br />
you to do what they want, and you can choose to let those<br />
words bounce right off you.<br />
Think about a difficult scenario which tends to come up<br />
in your life – with your boss, your in-laws, your child, your<br />
partner, friend or helper, and consider whether you could deal<br />
with this person more assertively. Practising how you speak<br />
to them in a role play or even talking to yourself in a mirror,<br />
will help you to find a form of words you are comfortable with,<br />
and say them calmly without blushing or stammering.<br />
Counsellors can also guide you in learning to become<br />
more assertive, and the MSWA counselling team can<br />
be contacted on 9365 4888. There are also lots of good<br />
websites on the internet describing assertiveness<br />
techniques to learn. Go for it!<br />
THE PEER VOLUNTEER<br />
SARAH LORRIMAR, MSWA COORDINATOR OF HEALTH EDUCATION AND PEER SUPPORT<br />
MSWA Peer Support Volunteers are people living with multiple<br />
sclerosis (MS) who give their time to provide support to others<br />
living with MS. Peers provide a unique and invaluable support<br />
which comes from a lived experience. They understand what<br />
it is like to live with MS – receiving the diagnosis, the physical<br />
symptoms, the emotions and all the other things which MS<br />
can bring about.<br />
Peer volunteers are there to answer questions, share their<br />
experiences and help people link in with resources and<br />
services. The role of the peer volunteer is not to say what<br />
they think people should do, or to judge, instead it is to listen<br />
respectfully and privately. For a peer support relationship to<br />
be effective, there needs to be trust and an understanding<br />
that all conversations and the information shared in these<br />
remains confidential.<br />
The support provided by our peer volunteers can be seen in<br />
various forms, some attend groups and workshops to share<br />
their story whilst others provide support over the phone and<br />
via email. People can choose the way in which they provide<br />
and receive support, and it can be done anonymously.<br />
Our peer volunteers are provided with ongoing support from<br />
MSWA and before engaging with other Members, the peer<br />
volunteers meet with the Coordinator of Health Education<br />
and Peer Support to discuss the role, its responsibilities,<br />
and receive and sign a manual agreeing to adhere to the<br />
peer volunteer guidelines. The guidelines which surround<br />
confidentiality, boundaries and communication are developed<br />
to ensure everyone involved feels safe and supported, and to<br />
provide clarity about the purpose of the peer relationship. It is<br />
also a good way to provide support and skills to complement<br />
the experiences and understanding that our peer volunteers<br />
already have.<br />
Engaging in peer support, whether through a peer volunteer<br />
relationship or attending support groups can be hugely<br />
beneficial. With an opportunity to connect with others, people<br />
feel less isolated, they can gain a better understanding of their<br />
diagnosis, feel more at ease and make proactive changes to<br />
improve their health and wellbeing.<br />
If you would like more information about the peer<br />
volunteer role, please contact Sarah Lorrimar on<br />
9365 4858 or Sarah.Lorrimar@mswa.org.au.<br />
MSWA BULLETIN SPRING <strong>2018</strong> | 17
WELLNESS<br />
SARAH LORRIMAR, MSWA COORDINATOR OF HEALTH EDUCATION AND PEER SUPPORT<br />
Wellness involves making positive choices about the way you<br />
live your life, to ensure you are feeling your best. This includes<br />
your behaviours, your lifestyle choices and taking action to<br />
keep informed about your health. It is a process which is<br />
unique to everyone and is something which will continue<br />
to change and evolve over your lifetime. There has been an<br />
increasing interest in the subject of wellness amongst people<br />
living with multiple sclerosis (MS) and although it may require<br />
some added consideration, incorporating healthy lifestyle<br />
choices into your daily life will help you achieve improved<br />
health and wellbeing.<br />
What’s Been Happening<br />
Information Sessions<br />
An important aspect of wellness is keeping informed, by<br />
accessing reliable and relevant information and resources.<br />
Being aware of MS and other aspects of your health, will<br />
help you feel more prepared and confident to make informed<br />
choices about your health and wellbeing.<br />
In June and July, two MSWA information sessions were held<br />
for people living with MS and their support persons. The first<br />
session was tailored for those newly diagnosed with MS and<br />
the second session was open to all. Each session began with<br />
a presentation from Community Access Nurse, Rosie Hunt<br />
which included a general overview of MS, symptom and<br />
relapse management, new treatments and the influence of<br />
a healthy lifestyle. Following Rosie’s presentation, our peer<br />
volunteers Tom and Sonya both shared their experiences of<br />
living with MS, which proved an invaluable inclusion to the<br />
evenings. To close the sessions, a Q&A panel made up of<br />
various allied health team members including Physiotherapy,<br />
Counselling, Nursing, Occupational Therapy, Dietetics,<br />
Speech Pathology and Social Welfare discussed the services<br />
they provide and answered questions from attendees. The<br />
sessions were a great way to share information amongst<br />
health professionals and peers and both received positive<br />
feedback including:<br />
“Great start to a long journey, very positive information.”<br />
“That was excellent, and the speakers were wonderful.”<br />
“Thank you for a great session!”<br />
Move…Breathe…Mindfulness for MS<br />
As I write this, we are halfway through the four -week mindful<br />
movement program run by Cathy Goldie, one of our counsellors<br />
who is also a qualified yoga instructor. Classes are being held<br />
at a small yoga studio in Wangara from 5-6pm. Focused on<br />
movement, breathing and yoga, the postures are adjusted to<br />
suit everyone taking part. With guided breathing, the class is<br />
led through standing and seated yoga postures for one hour<br />
before the session is closed with a meditation in Shivasana<br />
pose. Following the meditation, group Members are welcome<br />
to enjoy a cup of herbal tea and relax in the yoga studio’s<br />
designated ‘chill out area’. Unfortunately, due to the strong<br />
winds and heavy rains in our second week, the class was<br />
cancelled but we look forward to seeing everyone again soon!<br />
Keeping Your Brain Active<br />
Just like exercise for your body, mentally stimulating your<br />
brain helps it to stay active which is particularly important for<br />
people living with MS. Challenging your brain can improve its<br />
ability to adapt to cognitive changes brought about by MS. To<br />
challenge your brain, you could take part in activities at work<br />
as well as leisurely activities such as reading, painting, doing<br />
puzzles and playing board games.<br />
A 3-letter word has been taken out of each of the<br />
following words. Can you figure it out?<br />
B_ _ _TE<br />
_ _ _SE<br />
F_ _ _L<br />
OP_ _ _TE<br />
18 | MSWA BULLETIN SPRING <strong>2018</strong>
Managing Stress<br />
Everyday life can bring about a variety of stressful situations,<br />
particularly when living with MS. It is important to find<br />
effective strategies to help manage your stress and help you<br />
deal with the challenges of daily life. This will be different for<br />
everybody and can include catching up with friends, listening<br />
to music, exercising, being creative, yoga and meditation.<br />
Meditation is used to calm the mind and consequently relax<br />
the body. When we are tense, we breathe from the chest<br />
rather than the belly. One way to relax and reverse this style<br />
of breathing is to sigh. Three sighs is a short meditation which<br />
can be done anywhere and anytime and was adapted by<br />
Eric Harrison from the Perth Meditation Centre. This simple<br />
exercise allows you to purposely relax for a few moments.<br />
Eating Well<br />
Protein is one of the major building blocks in our foods, along<br />
with fats and carbohydrates. Proteins are made up of chains<br />
of smaller units called amino acids. When we eat foods<br />
containing protein, enzymes in our digestive tract break up<br />
these chains so that they can be absorbed into our blood and<br />
used in our body.<br />
Protein plays several very important roles in our bodies,<br />
including; forming and maintaining cells, maintaining<br />
muscles, being an important part of enzymes, which assist<br />
many essential chemical processes in our bodies, and<br />
forming blood cells. Adequate protein maintains lean muscle<br />
mass which contributes to strength and stamina, reducing<br />
the risk of falls and injury and improving independence and<br />
quality of life.<br />
Good sources of protein in our diet include:<br />
• Lean meat, chicken and fish (unprocessed is best)<br />
• Nuts and seeds<br />
• Tofu and tempeh<br />
• Beans<br />
• Eggs<br />
• Milk, yoghurt, cheese and dairy alternatives<br />
People of different sex and ages need a different amount of<br />
protein each day.<br />
If you are a male, you should aim for:<br />
3 serves if you are 19-50 years of age<br />
2.5 serves if you are 51 or over.<br />
If you are a female, you should be eating roughly:<br />
2.5 serves if you are 19-50;<br />
2 serves if you are 51 or over.<br />
Here’s how to do it:<br />
Breathe in deeply, opening the rib cage<br />
Sigh: let the breath go without forcing it<br />
Rest in the pause, feeling the belly soften<br />
Wait until you really need to breathe in again<br />
Take a second big in-breath. Feel the chest open further<br />
Drop into the soft, loose out-breath<br />
Pause again and wait<br />
And a third time, feeling everything loosen<br />
Let your breathing resume its natural rhythm. It will now feel<br />
slow, deep and soft<br />
Breathe naturally or sigh gently as you wish<br />
If you are interested in further practice of meditation,<br />
our counsellors are facilitating a mindfulness meditation<br />
session on Thursday, 20 September in Nedlands.<br />
For more information, please contact Sarah Lorrimar on<br />
9365 4858 or sarah.lorrimar@mswa.org.au<br />
Try this tasty protein-rich recipe<br />
from LiveLighter<br />
Lamb Tagine<br />
Ingredients<br />
• spray olive or canola oil spray<br />
• 200g lean lamb, diced<br />
• 1 onion chopped • 1 clove garlic finely chopped<br />
• 1 tsp ground cumin • 1 tsp ground coriander<br />
• 1 tsp ground cinnamon • 1 tsp smoked paprika<br />
• 1 tsp reduced-salt vegetable stock<br />
• 1 400 g can no-added-salt diced tomatoes<br />
• 1 carrot • 1/3 400 g can no-added-salt chickpeas, drained<br />
• 8 dried apricots • 3/4 cup couscous (GF option:<br />
• 3/4 cup boiling water • 1/2 lemon, zest and juice<br />
• 1/4 cup coriander stalks and leaves, optional<br />
Method<br />
1 Spray a large non-stick pot with oil and place over<br />
medium heat.<br />
2 Add the lamb to pan and brown on all sides for 2 minutes,<br />
stirring frequently. Remove from the pan and set aside.<br />
3 Cook onion and garlic over medium-high heat for 3 minutes,<br />
stirring often. Add spices and cook for 1 minute until fragrant.<br />
4 Return meat to pan along with stock powder, tomatoes,<br />
chickpeas, carrots, apricots and coriander stems (if using).<br />
Season with pepper and stir to combine. Cover and allow to<br />
simmer for 20 minutes until vegetables are tender and lamb<br />
is cooked through. Check halfway through and add a little<br />
more water if required.<br />
5 In a medium heatproof bowl combine couscous, lemon juice<br />
and zest and boiling water. Cover and set aside for 3 minutes<br />
or until ready to serve. Fluff couscous with a fork to separate<br />
grains and stir through half the chopped coriander leaves.<br />
6 Divide couscous between serving plates and top with<br />
remaining coriander.<br />
MSWA BULLETIN SPRING <strong>2018</strong> | 19
DOES DIET PLAY A ROLE IN<br />
MS DISEASE PROGRESSION?<br />
DR LUCINDA BLACK, MSWA FUNDED POSTDOCTORAL<br />
RESEARCH FELLOW, SCHOOL OF PUBLIC HEALTH, CURTIN UNIVERSITY<br />
Around 40% of people with multiple sclerosis (MS) make<br />
dietary changes after their diagnosis 1 sometimes to lose weight<br />
and sometimes with the goal of reducing disease progression.<br />
However, there is very little consistency in the types of dietary<br />
changes people make – these range from healthy changes,<br />
such as increasing fruit and vegetable intake, to unhealthy<br />
changes, such as eating more convenience or snack foods.<br />
People newly diagnosed with MS often feel that they are<br />
not given sufficient dietary advice by their health care<br />
professionals. 2 This may partly be due to the fact that research<br />
on diet and MS disease progression has been limited and<br />
often poor quality; as a result, there are no evidence-based<br />
dietary recommendations specifically for people with MS.<br />
However, interest in this area of MS is growing rapidly, and<br />
many studies are under way that will help to answer some of<br />
the outstanding questions. Let’s have a look at the literature<br />
to date.<br />
Omega-3 fatty acids are very important for brain function,<br />
particularly the active forms of omega-3, known as EPA and<br />
DHA. These are the healthy fats we get from oily fish, fish<br />
oil supplements and cod liver oil. We do get omega-3 fatty<br />
acids from linseed, but only a small portion is converted in<br />
our body to the active forms, so linseed is not the best source<br />
of omega-3. Research on omega-3 and MS dates back<br />
to the 1970s, but trial quality was often poor and results<br />
were inconclusive.<br />
Two studies were conducted recently that assessed whether<br />
fish oil supplements might be effective in reducing MS disease<br />
progression. 3,4 Both studies randomly allocated participants<br />
with relapsing-remitting (RRMS) to two groups (treatment<br />
and control group). Participants in the treatment group were<br />
given a fish oil supplement, while participants in the control<br />
group were given a placebo supplement with no active<br />
constituent. After one to two years, researchers reported no<br />
beneficial effects of the fish oil supplements on MS disease<br />
activity. However, one study did show reduced inflammation<br />
in the treatment group compared with the control group. We<br />
know that inflammation is an important factor in MS disease<br />
progression, so reducing inflammation is a helpful outcome.<br />
These studies were considered ‘pilot’ studies, and included<br />
only a small number of participants (
Oily fish (eg salmon, tuna, mackerel, sardines) is the best<br />
dietary source of omega-3 and vitamin D and eating two serves<br />
of oily fish per week is recommended. Try to eat a variety of<br />
oily fish: it doesn’t have to be fresh, tinned fish will still contain<br />
these important nutrients. Avoid processed meats, which<br />
contain unhealthy additives, and limit your intake of other<br />
processed foods, including biscuits, cakes, confectionery,<br />
pastries, pies, commercial burgers, pizza, fried foods, potato<br />
chips, crisps and other savoury snacks, sugar-sweetened soft<br />
drinks and cordials, fruit drinks, vitamin waters, energy and<br />
sports drinks. These are considered ‘discretionary’ foods and<br />
should be eaten only sometimes and in small amounts.<br />
MSWA now has two practicing dietitians on board,<br />
who would be happy to help you make healthy dietary<br />
changes, simply phone 9365 4888.<br />
1<br />
Russell RD et al. (<strong>2018</strong>) Reported changes in dietary behaviour<br />
following a first clinical diagnosis of central nervous system<br />
demyelination Front Neurol 9:161.<br />
2<br />
Russell RD et al. (<strong>2018</strong>) Dietary responses to a multiple sclerosis<br />
diagnosis: a qualitative study Eur J Clin Nutr (in press)<br />
3<br />
Torkildsen et al (2012) n-3 fatty acid treatment in multiple sclerosis<br />
(OFAMS Study): a randomized, double-blind, placebo-controlled<br />
trial Arch Neurol 69:1044-51<br />
4<br />
Ramirez-Ramirez et al (2013) Efficacy of fish oil on serum of TNF<br />
α, IL-1 β, and IL-6 oxidative stress markers in multiple sclerosis<br />
treated with interferon beta-1b Oxid Med Cell Longev 709493.<br />
5<br />
Yadav et al (2016) Low-fat, plant-based diet in multiple sclerosis:<br />
A randomized controlled trial Mult Scler Relat Disord 9:80-90.<br />
ANTIOXIDANTS<br />
KAREN HUMPHRIES AND KATELYN CLEMENTS, MSWA DIETITIANS<br />
We hear antioxidants mentioned frequently but do we understand<br />
what they are, and the potential benefits may be? Here we<br />
provide an overview for Members and a delicious recipe.<br />
What are Antioxidants?<br />
Antioxidants are molecules that help to defend our body’s<br />
cells against oxidative damage from free radicals. Oxidative<br />
damage is associated with the risk of several health conditions<br />
including cancers, heart disease, and macular degeneration.<br />
By protecting our cells from damage, antioxidants also help to<br />
slow the body’s aging process.<br />
Some of the antioxidants that we can get from our diet<br />
include: vitamin C, vitamin E, beta carotene, selenium, zinc.<br />
manganese, copper, flavonoids, carotenoids, phytochemicals,<br />
and several enzymes.<br />
Where do antioxidants come from?<br />
There are many different antioxidants. Some we make in our<br />
body, while others come from food, drinks (like tea and wine)<br />
or supplements. In general, antioxidants are better taken in<br />
the form of food, especially vegetables and fruits. Eating a<br />
variety of different fruits and vegetables not only supplies<br />
our bodies with plenty of antioxidants, but also lots of fibre,<br />
vitamins, and minerals. Cooking with herbs and spices will<br />
also help to boost your antioxidant intake.<br />
Including plenty of fruit and vegetables in your diet will provide<br />
you with the protective effects of antioxidants. Eat the rainbow!<br />
Be sure to include a wide variety of coloured fruits and<br />
vegetables as they provide different kinds of antioxidants. The<br />
stronger and more vibrant the colour the better. Try to include<br />
reds, oranges, yellows, greens, browns and blues/purples.<br />
See below for a list of some nutritious vegetables and fruits<br />
that are in season in spring.<br />
Vegetables<br />
Beetroot<br />
Asparagus<br />
Avocado<br />
Chilli<br />
Red onion<br />
Carrot<br />
Peas/snow peas<br />
Rhubarb<br />
Fruits & Berries<br />
Orange<br />
Grapefruit<br />
Lemon<br />
Lime<br />
Mandarin<br />
Mango<br />
Paw paw<br />
Silverbeet<br />
Tomato<br />
Sweet potato<br />
Broccoli<br />
Zucchini<br />
Spinach<br />
Herbs<br />
Blackberries<br />
Blueberries<br />
Raspberries<br />
Strawberries<br />
Apple<br />
Plum<br />
Boysenberries<br />
Capsicum<br />
Brussels Sprouts<br />
Broad beans<br />
String Beans<br />
Squash<br />
Pumpkin<br />
Eggplant<br />
Honeydew melon<br />
Passionfruit<br />
Persimmon<br />
Watermelon<br />
Peach<br />
Banana<br />
Rockmelon<br />
Crunchy Green Salad<br />
Ingredients:<br />
• 15 punnet sugar snaps • 120g rocket leaves<br />
• 1 small head of broccoli • 1 medium zucchini<br />
• 15 green beans • 1 avocado • 2 sprigs of mint<br />
• 3 alfalfa sprouts • 2 tbs olive oil • 1 tbs lemon juice<br />
• Black pepper • Salt<br />
Method<br />
Top and tail the zucchini. Using a peeler, peel the zucchini<br />
lengthways to make long thin strips.<br />
Top and tail the green beans and cut the broccoli into small<br />
florets. Steam the beans and broccoli for 2 minutes and<br />
refresh in cold water.<br />
De-string the sugar snaps and keep whole or cut in half if large.<br />
Slice the avocado.<br />
On a flat platter or large bowl, arrange the rocket and mint<br />
leaves. Add zucchini ribbons, broccoli, green beans, sugar<br />
snaps, and avocado; then top with alfalfa sprouts. Drizzle<br />
olive oil and lemon juice over the salad and season with salt<br />
and pepper.<br />
MSWA BULLETIN SPRING <strong>2018</strong> | 21
FATIGUE<br />
ROSEMARIE DRAVNIEKS, MSWA MANAGER OCCUPATIONAL THERAPY<br />
Fatigue is often referred to as a hidden symptom of multiple<br />
sclerosis (MS). Estimates vary but it is considered to affect<br />
between 60% – 80% of people with MS, the most common<br />
reported symptom affecting people with MS.<br />
Fatigue is not the same as tiredness. Tiredness is a normal<br />
experience for everyone and is usually resolved by getting a<br />
good night’s sleep.<br />
Fatigue on the other hand is the experience of a daily lack<br />
of energy and overwhelming tiredness that is not resolved<br />
by sleep. This level of fatigue can have a severe impact on<br />
a person’s normal day to day functioning and therefore their<br />
quality of life.<br />
So, what can you do about it?<br />
If there is an additional underlying medical cause for<br />
your fatigue, this needs to be addressed by your treating<br />
doctor, however there are some steps you can take to help<br />
manage fatigue:<br />
• Assess your available energy levels – think of your<br />
personal energy like a bucket. If you take something out of<br />
the bucket it needs to be refilled or it will run dry. This may<br />
be tracked over the course of a day or a week depending<br />
on what works for you. You may want to keep a diary for a<br />
week to see if there are patterns or triggers to your fatigue,<br />
what activities fatigue you etc. Also see what activities reenergise<br />
you.<br />
• Be aware of your own warning signs that indicate you<br />
are getting fatigued and act early. Some of the signs you<br />
may have include tired eyes, heavy legs, general tiredness,<br />
stiffness in shoulders, lack of concentration, poor balance,<br />
weakness or feeling ill, unmotivated, sleepiness, increased<br />
irritability, increased anxiety, feeling impatient and so on.<br />
It’s important to rest rather than try and push through these<br />
signs; you will recover quicker.<br />
• Conserve your energy for the activities that are important<br />
to you:<br />
– Plan and organise your work day/week<br />
– Delegate tasks to others when possible<br />
– Schedule in rest breaks before you become fatigued.<br />
Regular short breaks are more beneficial that one long<br />
break after a long period of activity<br />
– Pace yourself – Try not to rush activities at the beginning.<br />
Alternate between sitting and standing when you can<br />
– Use good body mechanics to reduce strain on our body<br />
– work without bending over, when lifting use your leg<br />
muscles to lift not your back, move items in several small<br />
loads rather than one large load, or better still, use a<br />
trolley to transport items, avoid reaching overhead<br />
• Eat Well – fatigue can be made worse if you are not eating<br />
enough or if you are not eating nutritious energising foods<br />
• Exercise – Reduced physical activity can make you feel<br />
worse and more fatigued. If you stay active within your<br />
limits, such as regular moderate exercise, this can increase<br />
your feelings of energy<br />
• Sleep well – poor sleep will make your fatigue worse<br />
• Dealing with heat and humidity which often aggravate<br />
MS related fatigue you can:<br />
– Drink cool water<br />
– Stay inside during hot times of the day<br />
– Wear breathable clothing<br />
– Consider use of cooling vests/neck ties<br />
22 | MSWA BULLETIN SPRING <strong>2018</strong>
• Manage your stress – Feelings of stress can increase<br />
feelings of fatigue. Some suggestions for managing stress<br />
include:<br />
– Adjusting your expectations – if you have 10 things you<br />
want to do, reduce this down to two to three things and<br />
schedule the others for another day<br />
– Talking to family members/friends to help them<br />
understand and be able to help you<br />
– Speaking to other people with MS to get support and<br />
ideas– strategies they use to manage stress and fatigue<br />
– Relaxation techniques<br />
– Recreational activities – can help to divert your attention<br />
from fatigue as well as re-energising you. It needs to be<br />
something you enjoy without requiring large amounts<br />
of energy, such as listening to music, reading, knitting<br />
and so on<br />
MSWA provides information about fatigue and a range<br />
of options to assist you in fatigue management. We have<br />
education sessions depending on your individual needs<br />
ranging from one-on-one advice, short presentations,<br />
half-day workshops and a six-week education program.<br />
These programs are more detailed and help you to better<br />
understand MS fatigue and identify strategies to help manage<br />
it. There is the added benefit of meeting others and sharing<br />
ideas and supporting each other, as you are facing the same<br />
issues.<br />
We also have a Fatigue Management App MS Energise<br />
available that can be uploaded to Apple devices. This is a<br />
self-paced fatigue management program.<br />
Over the coming months we will be offering some short<br />
information sessions on fatigue at various Outreach locations,<br />
scheduling some half-day workshops in both metro and<br />
Bunbury locations.<br />
If we have sufficient interest, we will run a six-week program,<br />
commencing once a week from Tuesday, 16 October to<br />
Tuesday, 27 November.<br />
If you are interested in getting more information on how<br />
to manage your fatigue, please contact the Occupational<br />
Therapy Department us on 9365 8888 to discuss the best<br />
option for you.<br />
COGNITION<br />
GEMMA MILENTIS, MSWA OCCUPATIONAL THERAPIST<br />
We use our cognition every day, in fact, you are using it right<br />
now to read and comprehend this article. But what exactly is<br />
cognition? And is there anything we can do to minimise the<br />
effects of cognitive changes in our daily lives?<br />
Cognition refers to all aspects of memory and thinking.<br />
Approximately 50–70% of people living with multiple sclerosis<br />
(MS) experience some problems with cognition. Whether it<br />
is forgetting a few appointments, finding it difficult to focus<br />
and maintain attention, recognising objects and/or people, or<br />
learning and recalling new information. As it is with the physical<br />
symptoms of MS, the effects of cognitive change are different<br />
for everyone.<br />
Cognitive changes can be subtle and can be mistaken as the<br />
person simply ‘not listening.’ Research shows that most people<br />
with MS who experience a change in their cognition, start to<br />
notice a change when it becomes difficult to read a book, or<br />
follow a conversation with more than two people involved. It<br />
can be said that the most common area of change is the speed<br />
at which a person can take in and process information.<br />
There are several factors that impact a person’s cognition,<br />
other than the changes that occur within the brain. These<br />
include fatigue and tiredness, emotional stress, relapses,<br />
physical restrictions, medication, hormonal changes and<br />
lifestyle changes. When people are depressed or feeling low,<br />
they can suffer memory lapses or problems with concentration.<br />
So, what are some tips that<br />
you can follow to keep your<br />
brain healthy?<br />
• Exercise<br />
• Mental Stimulation – read, do crosswords<br />
• Nutrition – eat well<br />
• Social supports; stay connected socially<br />
• Vitamin D<br />
• Treatment for mood disorders<br />
• Quality sleep is vital for good brain health<br />
• Cognitive strategies; use lists or reminders – be organised<br />
Lack of participation can also impact cognition as the brain is<br />
not being stimulated. This is where our OTs can help!<br />
The MSWA Occupational Therapy department can provide<br />
advice and compensatory strategies to help manage cognitive<br />
changes. As no two people are the same, our OTs will work to<br />
provide an individualised approach focusing on your lifestyle<br />
and priorities.<br />
We are also looking at running five-week cognition group<br />
to provide a more in-depth discussion into cognition. More<br />
details to follow closer to the date!<br />
If you are interested in learning more about cognition<br />
and trialling some strategies to manage change,<br />
please contact one of our Occupational Therapists on<br />
9365 4888 to express your interest.<br />
MSWA BULLETIN SPRING <strong>2018</strong> | 23
UPDATE ON<br />
MSWA FACILITIES<br />
SANDRA WALLACE, MSWA MANAGER STRATEGIC SUPPORTS<br />
Here is a brief update on the progress of our expanding<br />
facilities and development of new and existing sites at MSWA.<br />
WILSON – the full refurbishment was completed at the end of<br />
July. We had five months of construction and building and at<br />
times it was very dusty and noisy. The result is a fresh, open<br />
look and feel that is lovely to be in! There has been some<br />
movement of staff to new office locations within Wilson, to<br />
promote efficiency and enable larger teams to be centrally<br />
located. We have gained a larger physio gym, new massage<br />
rooms and 36 extra desk spaces.<br />
Members returned to their outreach programs from 31 July.<br />
It is good to see them back here once again. The whole site<br />
has taken on a fresh new look and somehow everything looks<br />
bigger, and it all matches! Please feel free to visit us and have<br />
a look.<br />
KELMSCOTT – The fit-out of new premises in Kelmscott<br />
is well under way, we expect to be open for business by<br />
mid-September. These premises will offer office space for<br />
meetings and consultations, counselling, and physiotherapy.<br />
Parking is easy as it is situated in a group of shops, at 2938<br />
Albany Highway, Kelmscott. If this may be of benefit to you,<br />
please speak with your therapist for details and the relevant<br />
program times.<br />
BUTLER – construction is making very steady progress and<br />
already is at lock-up. This site will be completed at the end<br />
of the year and opening early 2019. The large services hub<br />
is really taking shape and the high support accommodation<br />
units will benefit from separate communal spaces for<br />
entertainment and dining.<br />
ALBANY – great news, we have a site under offer, and are<br />
awaiting the outcome. It is a long process, but we will provide<br />
details when possible to do so. This will include both high<br />
support units and a service hub.<br />
BUSSELTON – ongoing negotiations; delays have gone<br />
beyond our control but should be resolved soon.<br />
SHENTON PARK – we are awaiting the Governments<br />
allocation of the title before we can progress but we will be<br />
building high support accommodation units on this site.<br />
PRESSURE MAPPING<br />
EMMA CLIFFORD, MSWA OCCUPATIONAL THERAPIST<br />
The Occupational Therapy department will soon have a<br />
pressure mapping system to supplement services provided<br />
for seating and positioning for those using wheelchairs.<br />
The highly sensitive mat allows the therapist to accurately identify<br />
areas of the body that may be at risk of developing pressure<br />
injuries when seated in a wheelchair or recliner. The mat is placed<br />
on the seating surface and, when the individual sits, a real time<br />
image of pressure distribution is displayed on a screen allowing<br />
the therapist to identify areas of increased pressure.<br />
This assessment allows the occupational therapist to do the<br />
following;<br />
• Identify the need to review the current seating surface<br />
• Select or eliminate different seating surfaces during trials based<br />
on individual need and the outcome of pressure mapping<br />
• Justify the need for<br />
different seating surfaces<br />
and provide an accurate<br />
measure for funding bodies<br />
to consider when applying<br />
for funding of equipment<br />
• Discuss with the individual their own risk of pressure injury<br />
and develop a plan together<br />
• Record reliable data to develop an effective pressure<br />
management plan if required<br />
If this is something you would like to access, please<br />
speak with your allocated Occupational Therapist or<br />
contact the department on 9365 4888.<br />
This valuable addition to our equipment has been made<br />
possible through our MSWA fundraising efforts. Thank you!<br />
24 | MSWA BULLETIN SPRING <strong>2018</strong>
EMPLOYMENT<br />
AND MS<br />
SUE SHAPLAND, GENERAL MANAGER MEMBER AND SERVICES<br />
Being employed has benefits beyond just purely financial – it<br />
can improve quality of life, provide social interaction and give<br />
us a sense of purpose.<br />
Over the years MS studies showed that people with multiple<br />
sclerosis (MS) were much more likely to fall out of employment<br />
than people with other chronic conditions and the general<br />
population. The financial impact of reduced employment for<br />
people with MS places a substantial burden on individuals,<br />
families and the wider community.<br />
A paper published from the Australian MS Longitudinal Study in<br />
2013 provided insight into the causes for loss of employment;<br />
it wasn’t just about accessibility or unsupportive employers,<br />
but poor symptom management was shown to have a real<br />
impact of staying in the workplace. Hidden symptoms such<br />
as fatigue and urinary problems were likely to have a negative<br />
impact on staying in the workplace.<br />
Recent Australian research has shown that more effective<br />
disease-modifying therapies are associated with increases in<br />
the amount of work, work attendance and work productivity.<br />
At MSWA we provide information and individual support for our<br />
Members regarding many aspects that can impact on them<br />
remaining in the workplace, reducing hours or re-entering<br />
the workforce after a break. Our Health Education Officer<br />
arranges evening information sessions with guest speakers<br />
from Maurice and Blackburn, speaking about disclosure<br />
of your MS, your workplace rights and how to access your<br />
superannuation insurance policies if you need to exit the<br />
workplace due to your MS. Other issues regarding income<br />
and benefits can be discussed with our social welfare team.<br />
Depending on what funding you have available for services,<br />
our OTs can refer you to Job Access for a workplace<br />
assessment to improve your workspace and provide advice<br />
on any adjustments, aids or equipment that may be of<br />
benefit, or direct you to services that can look at these issues<br />
for you. Job Access are also able to advise on and organise<br />
Government funding to support workplace modifications and<br />
the purchase of equipment that may be required. Funded<br />
OT services can also provide advice on accessing disability<br />
employment support agencies, who are funded to assist<br />
people to return to the workplace and /or re-train.<br />
Our MS nursing team can support you with effective symptom<br />
management strategies and information and advice about<br />
your MS. We can also link you with expert providers.<br />
There are so many supports available and the MSWA<br />
team is here – we are just a phone call away – 9365 4840<br />
or email us at Get-in-touch@mswa.org.au<br />
YOUNG DAD’S JOURNEY WITH MS<br />
Life was carefree and easy for Matt Nichols, a healthy young<br />
man who worked in a glass factory with the world at his feet.<br />
But in 2007, after telling his doctor he had been experiencing<br />
fatigue and dizziness at work, Matt was stunned to learn he<br />
had multiple sclerosis (MS).<br />
“When my doctor confirmed my diagnosis, I didn’t know<br />
what to think. I found it very confusing. Someone suggested<br />
I call MSWA and they were fantastic. Their nurses helped<br />
me understand the condition and since then, I’ve felt very<br />
supported.” Matt said.<br />
Now 44 years of age, life is starting to look up for Matt. He<br />
currently works as a cleaner four nights a week and cares for<br />
his six-year-old daughter, Willow.<br />
Willow is his continuous source of inspiration. “She’s full of<br />
positive energy and always there to give me a hug when I<br />
need it. I’m hoping that one day, I won’t need my crutches, so<br />
I can hold her hand while walking down the street.”<br />
Over the last 11 years, Matt has<br />
faced other symptoms such as<br />
fatigue, memory lapses and heat<br />
intolerance. It was his struggle<br />
with heat that prompted his move<br />
to Busselton in 2014.<br />
“Moving has had a really positive effect.<br />
You wouldn’t think that between Perth and Busselton there<br />
would be much of a difference climate wise, but just those<br />
few degrees make a big difference for me.”<br />
MSWA’s presence in the South West region has had a huge<br />
impact on his life and has supported him throughout his<br />
MS journey. Matt accesses physiotherapy, massage and<br />
counselling at MSWA’s local facility.<br />
“MSWA have been there for me every step of the way. I’m<br />
currently using crutches to get around, so having one<br />
facility catering to all my needs, means it will be easier<br />
to access my vital services under the one roof.”<br />
MSWA BULLETIN SPRING <strong>2018</strong> | 25
THE ARTIST<br />
WITHIN<br />
ROS HARMAN, MSWA MEMBER<br />
“Learn the rules like a pro so you can break them like an artist.”<br />
Salvador Dali.<br />
I visited the annual Year 12 art students’ exhibition at the<br />
Perth Art Gallery recently. The displayed works were amazing.<br />
They were meaningful, beautiful and so, so skilful. I was very<br />
impressed.<br />
I’d like to be an artist. Goodness knows I’ve tried over the<br />
years but there comes a point in your life where you have to<br />
face the truth: Monet I am not.<br />
When I was a child I would sit at the kitchen table with water<br />
paints and butcher’s paper painting boxy figures with stick<br />
legs and large eyes. During my teens in the seventies, I turned<br />
to macramé and crochet, starting ambitious pot plant hangers<br />
and crocheted bikinis. One year I convinced my mother to buy<br />
me a large quantity of purple raffia for what was supposed to<br />
be an incredibly beautiful wall hanging. That never-finished<br />
purple tangle ended up buried in the depths of a hall cupboard<br />
until it was finally thrown out when my mother moved house.<br />
University, marriage, multiple sclerosis (MS) and motherhood<br />
got in the way of my artistic career for a couple of decades, but<br />
I did attend a mosaic tiling course with a friend at some point<br />
during that period. I decorated a plant pot with multicoloured<br />
tiles, and gave it to my mother for her birthday. I know her<br />
well enough to know that the enthusiasm and thanks she<br />
expressed were not genuine. Next time I visited her I searched<br />
around for ages until I finally found it at the bottom of her<br />
beautifully manicured garden behind some shrubs. Neither of<br />
us ever mentioned it again.<br />
I picked up a paintbrush again in my 40’s when I attended a<br />
social painting group. I daubed acrylic paints on canvas in an<br />
attempt to recreate scenery from photos, but the results were<br />
not inspiring. I have not hung these pictures on my wall, but<br />
have them hidden behind some boxes in the spare room. I<br />
enjoyed the conversation and morning tea, though.<br />
When I was invited to join an art/craft group at MSWA I<br />
wondered if my time in the spotlight as an artist was finally<br />
coming. The group is called ‘Embrace the Shake’ and is<br />
intended to encourage creative expression in a supported<br />
environment among people with MS who have a tremor, or<br />
other difficulties with their hands. Actually, my hands are<br />
fine but they didn’t seem to mind me joining in anyway. I<br />
have discovered that it takes more than good hands to make<br />
a masterpiece but we have fun and we have cake for<br />
morning tea.<br />
I have a few excellent artists in my extended family.<br />
My elderly mother painted some very pretty watercolour<br />
flowers when she was younger. My brother-in-law, as well<br />
as being an excellent photographer and cameraman, paints<br />
lovely landscapes. A niece and a couple of nephews are<br />
skilled at drawing and are creative visual artists. Obviously<br />
the artistic DNA avoided me when I was born.<br />
I have had one moment of artistic success. Our group had<br />
an outing one day into the bush where we discovered some<br />
paperbark trees. We cautiously stripped a bit of bark off one<br />
that had fallen over. Back at the art room I selected a piece,<br />
added a couple of squiggles with black pen and put it inside<br />
a frame I found, and lo and behold – a landscape! I have my<br />
bark painting on my sideboard in my living room, and just nod<br />
modestly when guests and visitors compliment me.<br />
Art is good for you, apparently. “Art develops the whole<br />
brain. It is proven that art increases attention, strengthens<br />
focus, requires practice, develops hand-eye coordination<br />
and interacting with the world using mediums and tools.”<br />
(Obxartstudio.com) I did some research and there are lots of<br />
quotes by famous artists. Jackson Pollock of Blue Poles fame<br />
stated that “Painting is self-discovery.” Don Miguel Ruez said<br />
“Every human is an artist.” That may be true, but I note that<br />
famous Impressionist Henri Matisse once said “Creativity<br />
takes courage.” I know that is true.<br />
I don’t think I am going to make my mark on the world<br />
through painting. I think I’ll stick to writing. But I will<br />
keep going to our art group. I enjoy the morning tea.<br />
26 | MSWA BULLETIN SPRING <strong>2018</strong>
THAT’S LIFE<br />
WITH NARELLE<br />
NARELLE TAYLOR, MSWA MEMBER<br />
MSWA has arranged and provided me with so much<br />
assistance, in so many forms, since I joined 22 years ago. I’ve<br />
had lots of support workers who have helped me be good at<br />
whatever role I was enacting at the time. I’ve grown fond of,<br />
become grateful to, and been respectful of them, as I’m sure<br />
they must have come to be of me, and now some of them hold<br />
places in my memory like friends, or family members.<br />
When I was alone at home, my children had married and<br />
moved out, my husband had died, I was swanning about in<br />
a place that was far too big for just one person. The support<br />
workers would come more frequently because I needed their<br />
help more frequently. It dawned on me that a ‘care facility’<br />
would do everything the carers were doing, and I’d be able to<br />
go out and come back, the bed would be made, the washing<br />
would be done, the food would be cooked, and I would not<br />
have had to supervise any of it.<br />
My support worker comes here now as ‘social support,’ and<br />
the staff here do all the other stuff. It suits me very well.<br />
Some support workers at home had been coming for years.<br />
One even came to be ‘social support’ at this facility when I<br />
had moved here. My transition away from home, because I’d<br />
chosen to do it, was not as confounding and worrisome for<br />
me, as it seems to be for so many of the other residents here.<br />
Ageing alone separates the individual a little bit from the<br />
mainstream of society and then, for them to be locked into<br />
a place like this, for their own safety of course, is so far from<br />
their understanding. It’s so often a topic of conversation with<br />
them. Even those residents that are now spoon-fed and in<br />
a ‘transporter chair’ will sometimes grizzle that they could<br />
manage at home alone and will talk of their inability to fathom<br />
why they’ve been incarcerated.<br />
I speak with them about it as if I am dealing with a child.<br />
Because of their attitude, I then file them in the category of<br />
those residents whom I’m not going to include as a close<br />
friend. I still like them, but it’s one-way traffic. They’re out of<br />
time with life’s background music.<br />
One resident who has Parkinson’s, but is walking, came with<br />
me to a nearby coffee shop. We made our way there, me in my<br />
power-chair, and her holding on to the back of it. We crossed<br />
two roads then arrived and enjoyed our cake and cuppa.<br />
The young table attendant then helped us negotiate safely<br />
past other tables and chairs, back out onto the footpath. Doris<br />
resumed her position behind my chair and the waiter said,<br />
“well, there you are ladies, all set to go. What are you going<br />
to do today?”<br />
I thought, “we’ve just done it!”<br />
I said, “well, Doris and I spend a lot of time in the laboratory,”<br />
he just nodded his head. He knew it wasn’t true and I hope<br />
he realised that his question was not suitable for Doris<br />
and I. He’s always very nice to me now and I usually go there<br />
for morning tea with my support worker and he always serves<br />
us with a pleasant alacrity.<br />
I am proud of the way my support worker and I can get around.<br />
We can go almost anywhere. The world is becoming more<br />
wheelchair-friendly. It’s my oyster! Comparatively speaking,<br />
we are so good. I heard recently of young sportsmen, soccer<br />
players actually, who each needed to be sedated and wrapped<br />
up like parcels in order to get back on track and go home. I’m<br />
sure they’d be impressed with our form.<br />
MSWA BULLETIN SPRING <strong>2018</strong> | 27
FUNDRAISING<br />
NEWS<br />
MSWA BRAND AND COMMUNICATIONS<br />
<strong>2018</strong> MSWA Annual Dinner Auction<br />
On Thursday, 16 August the Board of Directors hosted the<br />
MSWA Annual Dinner Auction at the stunning Fraser’s State<br />
Reception Centre.<br />
This event allows MSWA to thank our supporters while raising<br />
much needed funds for Western Australians living with multiple<br />
sclerosis (MS) and all neurological conditions. The event is not<br />
possible without the ongoing support of our community and<br />
donors, and thanks to their continued efforts, we raised just<br />
under $100,000 dollars, breaking last year’s record.<br />
It was a beautiful evening and State Reception Centre, Kings<br />
Park played host to 300 guests including Members, dignitaries,<br />
sponsors and staff. The night included a panel interview with<br />
MSWA CEO Marcus Stafford, MSWA Member Chloe Baker<br />
and MSWA funded researcher Professor Prue Hart. They gave<br />
the audience an insight into life with MS and the world-first<br />
research offering hope to people living with MS.<br />
Our main auction items had a great response and got the<br />
bidding war started. To name a few, there was a luxury<br />
escape to Larry Cherubino Winery in Margaret River, a holiday<br />
for two to Europe, and an exclusive tour of the Channel<br />
Nine Studio followed by dinner at Point Bar and Grill with an<br />
on-air personality.<br />
We were very pleased to announce the MSWA Annual Dinner<br />
Auction 'Commitment Award' winners. Central Park won the<br />
business category award for their incredible commitment to<br />
our annual Step Up for MSWA, and the <strong>2018</strong> World MS Day<br />
activities. While the individual category award was presented<br />
to Andrea & Vlad Martinovich who have been supporting<br />
MSWA since 2011.<br />
MSWA Individual Commitment Award winner, Vlad Martinovich and<br />
MSWA President George Pampacos.<br />
Guests checking out auction items.<br />
Once again, thank you and congratulations on another<br />
successful night which brought together MSWA Members,<br />
Clients and the Western Australian community.<br />
MSWA Ocean Ride – Sunday, 25 November <strong>2018</strong><br />
Now in its ninth year, the MSWA Ocean Ride – Powered by<br />
Retravision is the only community bike ride event of its kind<br />
within the metro area.<br />
The event has grown in numbers of participants, and now<br />
includes five ride distances to cater for all ages and capabilities,<br />
as well as a special Members’ Ride for MSWA Members.<br />
Join us today and put your body - and bike - on the line!<br />
Your support will make a difference to Western Australians<br />
living with MS and all neurological conditions.<br />
To find out more visit www.mswaoceanride.org.au<br />
28 | MSWA BULLETIN SPRING <strong>2018</strong>
STRAY CATS THEATRE COMPANY<br />
PRESENTED SHREK THE MUSICAL<br />
SALLY NEWMAN, MSWA MEMBER<br />
Sometimes all we want to do is run and hide from reality.<br />
We want to pretend we have no responsibility, no disability, no<br />
housework and no bills. Imagine if life could be just a simple<br />
and fun fairy tale? Well thanks to community theatre it can be.<br />
Once upon a time in this instance, was a colourful and<br />
mythical story on the stage of Mandurah Performing Arts<br />
Centre, when Stray Cats Theatre Company presented Shrek<br />
The Musical. A cast of experienced and skilled actors brought<br />
the Dreamworks classic to an excited audience of all ages.<br />
For those who do not know the story of Shrek, here is the<br />
simplest overview I can offer. Shrek is an ogre – fat, green and<br />
smelly (consider him our disability). Donkey is a humorous,<br />
sarcastic and loveable ass who makes everything in life funny<br />
(even the tough times). And Fiona the princess is the beautiful<br />
damsel, trapped in the tower awaiting a prince to rescue her,<br />
so she can fall in love and live happily ever after. Oh, to be that<br />
beautiful princess!<br />
The production was led by Director Karen Francis, Vocal<br />
Director Kristie Gray and Musical Director Vanitha Hart.<br />
Larger than life actor, Nicholas Gaynor brought the character<br />
of Shrek to life and his onstage presence teamed perfectly<br />
with the comedic Donkey, portrayed by Jiojo Nawanawa. And<br />
of course, that beautiful princess played by Lisa Taylor.<br />
An ensemble and lead cast of more than seventy people<br />
presented a professional, well executed production and should<br />
be very proud of their interpretation of Shrek The Musical.<br />
Act two saw Shrek and Donkey become friends and on the<br />
King’s order, set off to rescue the princess; she is horrified<br />
to discover her knight in shining armour is an Ogre. Alas, as<br />
the story unfolds and love’s true kiss brings them together –<br />
Princess Fiona also turns into a fat, ugly, smelly ogre.<br />
So why did I review this musical theatre show for our <strong>Spring</strong><br />
Edition? Because Shrek reminds me of living with multiple<br />
sclerosis (MS). Life is not a fairy tale, but we can find<br />
goodness and laughter.<br />
Disability can be perceived as smelly and unlikable and<br />
somewhat ugly! I feel like nobody understands me, and I am<br />
sure I am not alone when I think, “I am living in a swamp land,<br />
somewhere completely unfathomable to others.”<br />
Of course, to other ogres like me, they see my world as<br />
just fine!<br />
And then the ‘disability’ meets someone ‘normal’ and they fall<br />
in love. Love sees past the physical self and into the heart of<br />
the ogre, and even though I feel like an ogre, I know inside I<br />
am a still a princess.<br />
Why not visit www.manpac.com.au for a full listing of<br />
their <strong>2018</strong>/19 season and escape reality for just one night.<br />
Mandurah Performing Arts Centre is a quality venue with<br />
ACROD parking bays, all access toilets, theatres and foyers.<br />
The adjoining boardwalks also have ramps and railings<br />
for ease of access for you to enjoy the beautiful estuary<br />
and nearby cafes. The venue also honours the Companion<br />
Card WA Program which makes for a hassle-free, night of<br />
entertainment for you and your carer/companion.<br />
When will your ‘Once Upon A time’ become a reality.<br />
Discover community theatre soon.<br />
SPEECH PATHOLOGY WEEK <strong>2018</strong><br />
CASSANDRA THOMAS, MSWA SPEECH PATHOLOGIST<br />
Speech Pathology Week takes place on Sunday, 19 to<br />
Saturday, 25 August <strong>2018</strong>. The theme for Speech Pathology<br />
Week in <strong>2018</strong> is:<br />
Communication access is communication for all!<br />
More than 1.1 million Australians have communication or<br />
swallowing disorders which adversely affect their ability to<br />
undertake everyday activities and participate successfully in<br />
social interactions.<br />
Speech Pathology Week seeks to promote the speech<br />
pathology profession, the work done by speech pathologists<br />
and the role they play in the lives of Australians with speech,<br />
language, communication and swallowing difficulties.<br />
During Speech Pathology Week the MSWA speech pathologists<br />
will be talking to Members and Clients at Outreach about the<br />
profession and services that can be provided to them.<br />
The department will also be running weekly word finding<br />
groups throughout the year. These sessions are designed for<br />
people with neurological conditions and will focus on;<br />
• The provisions of educational information in word finding<br />
difficulties<br />
• Group sharing and discussions<br />
• Strategies to assist with word finding difficulties<br />
• Practical activities to use at home<br />
For further information on groups or other speech pathology<br />
services please contact the department on 9365 4888.<br />
MSWA BULLETIN SPRING <strong>2018</strong> | 29
VOLUNTEERING<br />
DAWN BURKE, MSWA VOLUNTEER COORDINATOR<br />
Where does the time go, I can’t believe I’m shouting out hello<br />
to you all again for the <strong>2018</strong> <strong>Spring</strong> Edition of the <strong>Bulletin</strong>.<br />
I’m not sure about you, but my feet hit the ground running at<br />
the start of the year and I’m having trouble with the rest of<br />
my body catching up. Luckily spring is on its way, and it will<br />
be time to stop and smell the roses, which hopefully means<br />
things might slow down a little.<br />
So much happens over the months between <strong>Bulletin</strong>s, it<br />
is hard to remember it all. National Volunteers Week just<br />
happened when I last wrote to you, and both events in Perth<br />
and Bunbury went well. It was very special having our CEO<br />
Marcus Stafford attend the volunteer luncheon in Bunbury<br />
recently. This event is usually low key and a bit more casual<br />
compared to our Perth event. The luncheon was held at<br />
Backbeach Café and had a real vibe and lots of noise in the<br />
background; such a beautiful venue which appears to be<br />
extremely popular with the locals.<br />
I thought I would share some statistical information regarding<br />
National Volunteers Week all over WA. Did you know, in WA<br />
alone, there were 235 celebrations held to recognise and<br />
thank volunteers and 16,129 volunteers attended these<br />
events. The breakdown of these celebrations looks like<br />
this; Kimberley Events four, Pilbara six events, Gascoyne<br />
two events, Midwest eight events, Goldfields nine events,<br />
Wheatbelt 19 events, Peel 14 events, Southwest 23 events,<br />
Great Southern seven events and Perth 131.<br />
Let’s not forget those who couldn’t attend an event or live<br />
in areas where an event wasn’t possible. We Western<br />
Australians, should be proud of all those people who put<br />
others before themselves and give back to the community.<br />
We are especially fortunate at MSWA to have over 250<br />
people volunteering with us in both our Member Services and<br />
Events teams.<br />
We had one of our annual Members camps at Moore River on<br />
28 May, which went off with a bang as usual. Our numbers<br />
are getting larger for this camp every year, which is great to<br />
see. Lots of fun, activities, laughter, great food and games.<br />
Again, I had the privilege to attend this camp as did three of<br />
our MSWA volunteers. I would like to thank Rosalind, Mike<br />
and Jacqui for coming along to help. The difference you make<br />
is immeasurable and we appreciate the time you take out of<br />
your week to attend, as it isn’t a day here and there, it’s for<br />
the long haul – four days and three nights.<br />
Jacqui came from Bunbury and had a long day travelling each<br />
way. It is great having volunteers attending camp and if any<br />
of you are ever interested in volunteering on camp or know<br />
of anyone who would, please contact me and we can discuss<br />
it further. As I always mention, I would like to thank the staff<br />
that attend, especially our cook, Kylie and her lovely assistant<br />
Rhonda. It was the first time for both of them and feeding 25<br />
hungry people is a feat all on its own, let alone doing it three<br />
times per day.<br />
The biggest news I would like to share, is that the<br />
refurbishments of our Wilson facility are all completed, and<br />
it is looking pretty fine. Thank you to all who have been<br />
affected throughout this transitional stage; the flexibility and<br />
enthusiasm in which volunteers, Members and staff have<br />
dealt with the upheaval has been amazing, and as you can<br />
see, it was worth the effort. ‘No pain, no gain,’ isn’t that<br />
how the saying goes? In no time at all it will be like nothing<br />
happened and we will be wondering what all the fuss<br />
was about.<br />
I would like to make a special mention to Lesley Pitt and Lynn<br />
Hoonhout for coming in over the final week of preparation of<br />
the unveiling of the Wilson facility, to set up the craft area for<br />
our volunteers and Members. Many of the staff have been<br />
working hard bringing it all together and have gone over and<br />
above their normal duties. Thank you all, it is the team spirit<br />
that keeps us motivated and working towards one goal. As my<br />
husband likes to continually remind me, there is no number<br />
one in team.<br />
Trish Watson from our events team would also like to<br />
share a few words:<br />
It has been a busy year for the events team. We kicked of the<br />
year with the new Albany Ride, which was well received along<br />
with the long-standing Albany Swim in February.<br />
This was followed in Perth by a fantastic World MS Day, we<br />
had a great turnout for the Street Appeal along with the Hip<br />
Hop Yoga in the park.<br />
Step Up for MSWA saw a record number of people take up the<br />
challenge to climb to the top of Perth’s Central Park building.<br />
These events would not be possible without the help of a<br />
dedicated bunch of volunteers, so we would like to take this<br />
opportunity to say a big THANK YOU to all the Members and<br />
staff who came along to support our events.<br />
30 | MSWA BULLETIN SPRING <strong>2018</strong>
We have our MSWA Ocean Ride coming up in November, so if<br />
you would like to lend a hand feel free to contact Trish Watson<br />
on 6454 3116 or for any general questions about events,<br />
please call 6454 3131.<br />
Thanks Trish. It’s fantastic what our events team does to<br />
promote awareness of multiple sclerosis (MS) and also<br />
raising funds to support research and people living with a<br />
neurological condition. These funds enable MSWA to make<br />
their lives that bit better as your work is amazing.<br />
Last and certainly not least, I would like to personally thank<br />
every one of our volunteers at MSWA. You are an inspiration<br />
to us all, and the difference you make, is HUGE, no matter<br />
how much time you give. Remember the statement ‘give a<br />
little, change a lot’ that’s all it takes to make a difference in<br />
someone’s day or their lives. For this, I truly thank you from<br />
the bottom of my heart.<br />
As always, my door is open, and I hope to see you. If<br />
you would like to discuss any further volunteering<br />
opportunities or if you have any feedback don’t hesitate<br />
to call me 9365 4888 or send an email to volunteer.<br />
coordinator@mswa.org.au.<br />
That’s all for now, take care, enjoy the warmer weather and<br />
see you around.<br />
Until next time<br />
ARTSY CRAFTY WEDNESDAY AT WILSON<br />
ZURAINI HUSSAIN, MSWA CARE SUPPORT WORKER WILSON OUTREACH<br />
After a few months of renovation, our Wilson Outreach is<br />
now back to business as usual. With the new fresh looks of<br />
our lounge, craft room and dining area, the rooms are just<br />
fantastic.<br />
Since the craft area will be back under Outreach supervision,<br />
we are thinking of making full use of this area. At the moment,<br />
every Monday we have the ‘Embrace the Shake’ group<br />
occupying the room, followed by card making on Tuesdays<br />
and art/paintings on Thursdays.<br />
Now, we hope to add ‘Artsy Crafty Day’ on a Wednesday; I<br />
have already been talking with some Members and they are<br />
keen to join in.<br />
At the moment we have a few<br />
‘Artsy Crafty’ ideas such as<br />
mosaic, alcohol ink art and<br />
paper quilling, but those are<br />
only a few of the exciting<br />
ideas so far. Any ideas are<br />
most welcome!<br />
We always welcome new<br />
Members to come and visit<br />
us at Wilson Outreach and participate in our activities or<br />
to come for socialising or even just a coffee!<br />
Please feel free to contact our Wilson Outreach<br />
Coordinator, Nicola Ryan at nicola.ryan@mswa.org.au if<br />
you have any queries or you wish to come in and see<br />
what it’s all about.<br />
SOUTHSIDE OUTREACH FRIDAY GROUP<br />
ANGIE WALLACE, MSWA MEMBER<br />
Our group will once again have a syndicate to buy our tickets<br />
in the next MSWA Mega Home Lottery. With most Members<br />
sharing in the purchase of eight tickets we are once again<br />
filled with optimism!<br />
Angie and John are excited about having their Japanese family<br />
(including two young school-aged children) staying with them<br />
for a year while their son studies at ECU. The granddaughters<br />
have had a challenge coping with a new school, different<br />
education system, English language etc. It’s been good for<br />
Grandma’s multiple sclerosis (MS) brain to keep up with all<br />
this new learning alongside the children.<br />
Member Helen is counting the days before she heads off for<br />
a Canadian holiday of a lifetime. Her new double-duty walker<br />
that converts to a wheelchair will prove invaluable! Looking<br />
forward to some great photos, Helen.<br />
Craft is popular with<br />
Members – activities include<br />
everything from key rings<br />
to 3D photo frames. Cheryl<br />
and Graeme enjoy putting<br />
together mind-bogglingly<br />
tiny mini-jigsaws each week,<br />
while Graham and Jacqui have<br />
a go at Rummikub.<br />
Get better soon Jerry – we miss your infectious laugh!<br />
A big hello to a few of our former Members (Michelle,<br />
Doug, Peter) who are now part of the new Mandurah<br />
Outreach group. Welcome to new Member here, Michelle.<br />
We hope you enjoy the fun and activities and friendly<br />
vibe of our Friday Outreach.<br />
MSWA BULLETIN SPRING <strong>2018</strong> | 31
ROCKINGHAM TUESDAY OUTREACH GROUP<br />
PETA MCCORMACK-LUCKINS, MSWA CARE SUPPORT WORKER<br />
The Tuesday Outreach group in Rockingham is very alive and<br />
well! The Members who attend every week thoroughly enjoy<br />
the lively chatter, each other’s company and the inventive<br />
craft activities!<br />
Recently they have started diamond painting and have also<br />
created button bowls and 3D photo frames!<br />
A beautiful home-cooked lunch is served fortnightly<br />
by Rosemary the cook, and she is supported by Sherril<br />
the kitchen volunteer. The alternate week we share a<br />
morning tea!<br />
Some themes the group have enjoyed this year included an<br />
amazing high tea to celebrate the Royal Wedding, which was<br />
held in March, and Christmas in July with all the trimmings!<br />
Some Members attending<br />
the group have even<br />
organised a mini holiday<br />
together at Treendale<br />
Gardens Respite Facility.<br />
We look forward to<br />
hearing about their stay.<br />
New Members are<br />
always welcome to come<br />
and join the group and<br />
you most certainly won’t<br />
be disappointed!<br />
For further details you can call the Rockingham Centre<br />
on 9592 9202 or email the Senior Outreach Coordinator<br />
Nicola.ryan@mswa.org.au<br />
GREAT SOUTHERN REGIONAL<br />
NEWS ROUNDUP<br />
CAROLINE CLARKE-SMITH, MSWA OUTREACH COORDINATOR<br />
We have had a busy year so far. With an information day, Ride<br />
for MS and then the Albany Swim, it was a hectic few weeks.<br />
Thanks to all those who participated, volunteered or just came<br />
along to give moral support, it made the day a huge success.<br />
It was really great to meet so many people who came to town<br />
from all over the place to compete. Well done to all.<br />
We have been to Great Southern Grammar and given a talk<br />
about multiple sclerosis (MS) and thanked them for their<br />
continued support with the Swim. We are considering inviting<br />
some students along to Outreach, so they can see what some<br />
of their fundraising has been spent on.<br />
As we like to hear what is happening and what our MSWA staff<br />
can help with, we have had Anne (OT) give a talk on assistive<br />
technology which was really interesting. Until someone lets<br />
you know what is out there and about the extensive range of<br />
apps that are available, you can be missing out. Some great<br />
apps are free – to help with memory, relaxation, organising<br />
your medications, shopping – and the list goes on. If you need<br />
help with anything you just need to ask MSWA staff.<br />
Suzanne our physio also jumped at the chance to talk about<br />
the benefits of exercise and explained that small amounts are<br />
often helpful. Exercise classes have been running on a Friday<br />
morning covering different areas. Strength and balance<br />
is one that has been popular, Pilates, and the pool classes<br />
on Tuesday and Thursday mornings. If you would like more<br />
information please give us a call.<br />
One large spend of our Swim money was allocated for the<br />
Reformer exercise machine which was a little over $4,000.<br />
Suzanne is keen to get a few more Members using it so come<br />
in, have a look and talk to Suzanne to see if it is suitable<br />
for you.<br />
We do send out a Members newsletter in The Great Southern<br />
so if you don’t already receive it and would like to, please give<br />
us a call on 9841 6651 or email us at albany@mswa.org.au<br />
and we can add you to the list..<br />
We really value your feedback so for outing ideas,<br />
guest speakers or activities let us know your thoughts.<br />
FYI whilst we are an MS Support group, we talk about<br />
lots of things, food comes up a lot!<br />
32 | MSWA BULLETIN SPRING <strong>2018</strong>
SOUTH WEST REGIONAL NEWS ROUNDUP<br />
SUZIE BARKER, MSWA BUNBURY OUTREACH COORDINATOR<br />
A big warm “hello” from all the Members and staff at the<br />
Bunbury Hub Outreach Group as we welcome some brighter<br />
weather heading into spring. We are now into our second year<br />
of enjoying our wonderful Outreach area and all the services<br />
this wonderful facility provides for our Members and Clients<br />
here in the south west area.<br />
Apart from our weekly social gatherings and playing various<br />
board games including the popular focus word quizzes, Bogan<br />
Bingo and a trip to the Las Vegas Casino Strip, we have also<br />
enjoyed visits from several guest speakers. They have covered<br />
various topics including a very informative presentation by a<br />
volunteer Dave from the Citizens Advice Bureau, on a range of<br />
situations that may affect any of us in everyday life.<br />
The highlights of this year so far have been firstly, celebrating<br />
World MS Day in late May with a very interesting and<br />
informative presentation given by special guest and MSWA<br />
funded researcher, Dr Lucinda Black on her recent research on<br />
Diet and Living with MS. This was followed by a presentation<br />
from Member Services General Manager Sue Shapland<br />
detailing recent MS research updates and information about<br />
the NDIS soon to commence in the remaining south west<br />
as of October 1, <strong>2018</strong>. The morning was very well attended<br />
with many questions asked with informative conversation<br />
and discussions being had around the room regarding these<br />
topics and the coming future changes of the NDIS. Members<br />
were advised that our MSWA NDIS team will contact them all<br />
in August and schedule information sessions in Bunbury – so<br />
stay tuned.<br />
Secondly, after a presentation by guest speaker Mr Laurie<br />
Blurton from the Bunbury Lawn Bowling Club to gauge interest<br />
in the possibility of an outing to their club, we switched tacks to<br />
holding an indoor bowling morning in our large Outreach area.<br />
This proved to be a great success with Members, Clients and<br />
staff participating together. We had a great laugh, so many<br />
thanks to Nicola Ryan and Wilson for loaning their bowling<br />
mat and gear to the Bunbury Group. Laurie has graciously<br />
offered to acquire a donated bowling mat for our group to hold<br />
future bowling challenges and trophy mornings and to provide<br />
a set of bowls to use. Many thanks to Laurie and the Bunbury<br />
Bowling Club for their time and organisation for the morning<br />
and into the future.<br />
We are now looking forward to once again hosting CEO<br />
Marcus Stafford for our regular MSWA update presentation<br />
in late August. We will have a special morning tea before the<br />
presentation, which is always well attended.<br />
Other activities in the pipeline are a holiday trip to Ireland to<br />
find some leprechauns, four leafed clovers, kiss the Blarney<br />
Stone and attempt some Irish dancing!! We are also excited<br />
to have been invited to return to Chalbury Park B & B gardens<br />
in Harvey by owners and friends Jeff and Karen Wittock<br />
for a garden morning tea. Our first outing to this beautiful<br />
establishment was absolutely fabulous, and to enjoy the<br />
immaculate surroundings in spring was, and will be again,<br />
sublime and uplifting for the soul.<br />
As I close, I would like to thank all our Members, Clients<br />
and staff for their great contributions to our group thus far<br />
this year, and always, and for making us who we are today.<br />
TREENDALE GARDENS<br />
PAULA KENNEDY, MSWA TREENDALE RESPITE COORDINATOR<br />
Wayne Harris, a much-loved resident at Treendale, sadly<br />
passed away in June <strong>2018</strong>. His parents have bought a lovely<br />
handcrafted wood and glass plant stand for Treendale. It is<br />
a lovely way for us to remember Wayne who was a lively<br />
and entertaining resident and member of our Treendale<br />
community; enjoying a joke, singing along with music and<br />
chatting to all who passed by.<br />
Our Treendale Gardens residential units will be full in August<br />
when a new gentleman moves in. He has regularly visited<br />
us and enjoyed staying in respite and is very much looking<br />
forward to joining us here. The residents continue to enjoy<br />
regular social support from the Individual Options team as well<br />
as regular recreational events in the communal area. Some of<br />
the residents, and our cooks, continue to enjoy working on<br />
our fruit and vegetable<br />
garden and reap the<br />
rewards, with their<br />
meals often including<br />
something homegrown<br />
from the garden.<br />
We still have many wonderful visitors to our respite<br />
house and family holiday unit, who come down to enjoy<br />
the restful atmosphere of Treendale Gardens and the area<br />
in general. We often have space so if you are interested<br />
in a country getaway please give us a call regarding a<br />
booking on 9725 9209, or email Treendale@mswa.org.au<br />
MSWA BULLETIN SPRING <strong>2018</strong> | 33
TREENDALE RESPITE AND A HAVEN<br />
AWAY FROM HOME<br />
GREG BROTHERSON, MSWA MEMBER<br />
My wife had major surgery on her shoulder, the tendons worn<br />
thin after years of singlehandedly carrying the increasing load<br />
of caring for me. Fortunately, there is MSWA’s Respite Home<br />
at Treendale, situated adjacent to the Leschenault Inlet at<br />
Bunbury that provided a safe haven for the next three months<br />
while my wife recovered. This was crisis accommodation, not<br />
actual respite, however if Treendale had not existed at that<br />
particular time the nursing-home alternative doesn’t bear<br />
even thinking about, except to say that the Treendale facility<br />
is ‘priceless.’<br />
Treendale is part of, but separate from, MSWA’s high-support<br />
accommodation units. Together it is a nicely proportioned<br />
complex set in well-manicured parklands next to a huge<br />
artificial lake which is the terminus of a natural stream that<br />
winds its way northeast from the Leschenault for a kilometre<br />
or so through the encroaching suburbia. Period-style<br />
footbridges allow access to both sides of the trickling stream,<br />
adding a special character which harmonises the area.<br />
Families of wild ducks are the final touch to this idyllic setting.<br />
If the weather is fine the journey by power chair makes a nice<br />
exploratory trip.<br />
To the east of Treendale, the facility overlooks a wide expanse<br />
of vacant land set aside for future development, and this<br />
land abuts a large blossoming shopping centre anchored<br />
by Woolworths at one end and Bunnings at the other – all<br />
of which is within easy reach by power chair. Treendale is a<br />
relaxing mixture of country life and the slow encroachment<br />
of suburbia stemming from Bunbury, with the architects<br />
obviously trying to balance the environment.<br />
Treendale reflects this attention to detail by the architects to<br />
fade the MSWA complex neatly into this carefully modelled<br />
setting. Considerable attention has been given to the security<br />
fencing however, which is unobtrusive but significant.<br />
Security, lighting and privacy is of paramount concern for<br />
the managers.<br />
This attention to detail continues inside the respite home.<br />
There are six spacious bedrooms, each with an overhead<br />
hoist, television and DVD player, connected to an equally large<br />
shared bathroom. The dining room and television area for<br />
those residents who desire big-screen viewing, is individually<br />
incorporated into a large open-plan room. It is a generous<br />
country-style home subtly incorporated into the larger facility<br />
which is in keeping with the great outdoors yet retains its own<br />
character and homely feeling. A three-bedroom holiday unit<br />
is attached.<br />
The wonderful staff go out of their way to make both Members<br />
and NDIS Clients comfortable. One cannot but feel other than<br />
completely relaxed and at ease in this particularly unique<br />
environment. The meals are country cooking at its best.<br />
Laundry is a daily service.<br />
For everyone involved in the decision-making process to<br />
utilise Treendale is a win-win situation. Carers get a break<br />
and Members/Clients get a holiday in a coastal/country<br />
locality connected to the Perth metropolitan area by a modern<br />
highway. If there is a need for some excitement, dining and<br />
entertainment, the bustling city of Bunbury is a short distance<br />
away using the multi-purpose taxi service.<br />
Since the early days when the facility was opened 8 June 2012,<br />
Treendale’s popularity has been slowly growing as realisation<br />
dawns that this is a first-class facility. It is therefore prudent<br />
to book ahead to avoid disappointment. For Perth residents<br />
transport can be arranged to and from the respite home.<br />
Treendale is a unique holiday experience, offering family<br />
members the added reassurance that the 24 hour 7 day<br />
service on offer is safe and their loved one will be cared for<br />
by MSWA’s certified and fully trained staff. Not as obvious as<br />
research, respite for carers, Members and NDIS Clients has<br />
an important role to play in the continuing fight against the<br />
unknown causes of neurological disability.<br />
If you would like to find out more about Treendale, or<br />
arrange a viewing, please contact Paula Kennedy on<br />
9725 9209 or email treendale@mswa.org.au<br />
34 | MSWA BULLETIN SPRING <strong>2018</strong>
Take a break<br />
in the South West<br />
Treendale is only 20 minutes from Bunbury,<br />
located next to a small parkland with wheelchair<br />
friendly paths and a shopping centre nearby.<br />
MSWA Treendale is our 6-bedroom, 3-bathroom purpose built, accessible respite<br />
home. Our staff are onsite 24/7 and are experienced in supporting people living<br />
with MS.<br />
Located next to our respite home is our wonderful 3-bedroom family holiday unit<br />
where family can get away from the routines, whilst accessing support for their<br />
loved ones if needed. We may even be able to assist you with transportation.<br />
Funding to cover your stay may be available through the Commonwealth Carer<br />
Respite Program or through your DSC or NDIS individual packages. Speak with<br />
our friendly team to chat about your individual needs.<br />
For more information or to book your stay at<br />
Treendale Gardens, phone us on 9725 9994<br />
MSWA BULLETIN SPRING <strong>2018</strong> | 35
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