Bulletin Autumn 2015
A special 150th edition. A special 150th edition.
150th Edition Bulletin
- Page 2: Inside | Autumn 2015 Letter from th
- Page 6: Round-up of research and other item
- Page 10: Safety during meals Michelle Searle
- Page 14: The Smart Equitest Balance Master M
- Page 18: A day trip to Antarctica John Coope
- Page 22: Volunteering news Dawn Burke Wilson
150th<br />
Edition<br />
<strong>Bulletin</strong>
Inside | <strong>Autumn</strong> <strong>2015</strong><br />
Letter from the Editor<br />
Dr Greg Brotherson<br />
The Multiple Sclerosis<br />
Society of WA (Inc.)<br />
Telephone (08) 9365 4888<br />
Fax (08) 9451 4453<br />
Freecall 1800 287 367<br />
Member Services<br />
Directory<br />
GENERAL MANAGER, MEMBER SERVICES<br />
Sue Shapland 9365 4840<br />
WANGARA OFFICE<br />
Unit 5/2 Prindiville Drive 9408 0772<br />
or 9409 8920<br />
BUNBURY OFFICE<br />
9 Ramsay Street 9791 2472<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 6651<br />
MARGARET DOODY RESPITE HOUSE<br />
Manager, Chris Rush: 9385 9574<br />
FERN RIVER<br />
Manager, Liz Stewart: 9356 2747<br />
HAMILTON HILL<br />
Manager, Jayne O’Sullivan: 9331 5780<br />
TREENDALE GARDENS<br />
Manager, Linda Kidd: 9725 9209<br />
INDIVIDUAL OPTIONS<br />
Manager Community Care Programs,<br />
Gail Palmer: 9365 4851<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 />
David Bugden, Sue Shapland, Sandra Wallace,<br />
Narelle Taylor, Leonie Wellington, Bhavna Jagtiani,<br />
Taryn Mokrzycki and Dawn Burke. The Editor<br />
welcomes unsolicited submissions. All articles are<br />
subject to a reviewing process. The views expressed<br />
are those of the Authors and do not necessarily<br />
reflect the view of the Society’s staff, advisors,<br />
Directors or officers.<br />
Letter from the Editor 3<br />
From the desk of the CEO 4<br />
A message from the General<br />
Manager – Member Services 5<br />
Stay In Focus groups 5<br />
Round-up of research and<br />
other items of interest 6-7<br />
National Disability Insurance Scheme<br />
Hills trial site 8<br />
Multiple sclerosis treatment update 9<br />
Update on MSWA funded<br />
research projects 9<br />
Safety during meals 10<br />
Hand therapy for function 11<br />
Getting back into the kitchen 11<br />
<strong>2015</strong> Events 12-13<br />
The Smart Equitest Balance Master 14<br />
Introducing Shannon 14<br />
Are you too hard on yourself? 15<br />
Book reviews 15<br />
That’s life with Narelle 16<br />
An action plan to reach for the stars 17<br />
Challenges when travelling 17<br />
A day trip to Antarctica 18<br />
Protecting yourself from the flu 18<br />
Party food 19<br />
MS Mega Home Lottery 20<br />
World MS Day 20<br />
Age not a factor 21<br />
Les Misérables 21<br />
Volunteering news 22<br />
Colin Whitton 22<br />
Wilson Outreach News 23<br />
Southside Outreach News 23<br />
NURSING Our nursing team is usually the first point of contact, after the neurologist,<br />
for anyone diagnosed with multiple sclerosis. We’re committed to providing holistic support<br />
so you have a greater understanding of what to expect from your condition.<br />
Manager: Lou Hatter on 9365 4809<br />
Hospital Liaison Nurse (S.C.G.H.): 9346 3333<br />
Community Nurses: 9365 4812, 9365 4838, 9365 4870, 9387 4846 or 9365 4888<br />
PHYSIOTHERAPY Physiotherapy aims to provide treatment interventions to develop and<br />
maintain mobility and function. Our physiotherapists are experts in movement and function,<br />
and work in partnership with Members to attain the highest possible level of independence.<br />
Manager: Marilyn Sylvester on 9365 4818<br />
Southside: Fridays on 9592 9202<br />
OCCUPATIONAL THERAPY Occupational therapists work with Members, and clients,<br />
to enable them to continue their work and other interests for as long as possible, where they<br />
may otherwise have been limited by their condition.<br />
Manager: Sandra Wallace on 9365 4804<br />
Heather Mearns on 9365 4894, Robyn Loxley (Assistive Technology) on 9365 4866,<br />
Ilissa Liew on 9365 4832 and Verity Defries on 9365 4833<br />
COUNSELLING Some people need support to deal with the news that they have MS,<br />
and the challenges that may present over time. Our qualified counsellors provide a safe<br />
space for you to explore your concerns, in a safe and confidential environment.<br />
Manager: Lisa Papas on 9365 4836<br />
Support Counsellors: 9365 4808 or 9365 4811 Peer Support Program: 9365 4808<br />
Welfare Officers & Funding Locators: 9365 4889 or 9365 4835<br />
CAMPS & RECREATION<br />
MSWA provides separate recreation camps for Members, carers, and families, primarily<br />
funded by Lotterywest, and for a nominal cost to participants. These camps provide a<br />
break from daily routines, and strengthen friendships and support networks.<br />
Coordinator for Camps & Recreation: 9365 4843 In-home care: 9416 4505<br />
INDIVIDUAL OPTIONS We are able to supply limited in-home support such as<br />
assistance with personal care for people with disability due to multiple sclerosis, to help<br />
them remain in their homes. Care and supports are provided through a combination of<br />
funding from the Disability Services Commission (DSC) and our own fundraising efforts.<br />
We also manage DSC allocated individually funded care packages.<br />
Contact us on 9365 4851 for more information.<br />
This editorial was first prompted after reading the most<br />
recent magazine from the Multiple Sclerosis International<br />
Federation, MS in focus, which was dedicated to ageing with<br />
multiple sclerosis. Researchers have discovered that 10% of<br />
people with multiple sclerosis are aged 65 years and older,<br />
which is meant to say something positive about the increased<br />
level of personal care that was specifically targeting older<br />
people with multiple sclerosis. What really caught my eye<br />
however, was the editor of MS in focus promoting the record<br />
of the magazine over the past thirteen years and managing in<br />
that time to publish twenty-three editions and build “…quite<br />
a history.”<br />
We may well agree, but this also got me thinking about our<br />
own home-grown <strong>Bulletin</strong>, the magazine’s breech-birth,<br />
its initial struggle for survival, evolution and its history of<br />
achievements over the past 29 years. Over this period of<br />
time, we have managed to publish 149 editions amounting to<br />
some estimated 372,500 copies.<br />
It was back in 1986 when the then CEO decided to stop<br />
production on the fledgling <strong>Bulletin</strong> newsletter because of a<br />
lack of confidence in its effectiveness. From a management<br />
point of view the decision was probably sound. Nevertheless,<br />
it still made sense that people with multiple sclerosis should<br />
be able to define the image of themselves they wanted<br />
projected into the community and in turn be informed about<br />
research, the politics of disability and how the Society<br />
was evolving.<br />
As a group of concerned Members, we couldn’t therefore<br />
just stand aside and leave the newsletter to simply die in its<br />
tracks when so many challenges lay ahead. An opportunity<br />
presented itself to ride a wave of enthusiasm created after<br />
the Board of Directors, who having approved the funding<br />
of the Society’s first computerised call-centre, allowed us<br />
to continue publishing a newsletter and I stepped up as the<br />
volunteer Editor. Space was made available in the occupational<br />
therapy room, which in spirit made us feel that we were now<br />
part of an increasingly visible ‘Team MSWA’.<br />
For our part we never missed a beat from that day on and<br />
by the end of the following year, OT assistant Maureen<br />
Grickage and I had written, solicited and purloined the<br />
material, and quite literally cut and pasted our work on<br />
to master-sheets ready for Instant Print to produce what<br />
would pass for a newsletter. We were finding our way as<br />
we developed the current format but still produced twelve<br />
by eight page editions of the newsletter in the first year.<br />
Never in our wildest dreams did it ever occur to any of us<br />
that 29 years later, we would be publishing the 150th edition<br />
of <strong>Bulletin</strong>.<br />
Brand & Communications Manager of MSWA, Taryn<br />
Mokrzycki says, “Over the past two years, the Society’s<br />
Brand & Communications Department has worked tirelessly<br />
to ensure MSWA presents itself as a professional,<br />
knowledgeable organisation.<br />
“This has included taking over the design of the <strong>Bulletin</strong><br />
magazine, re-designing the materials seen by Members<br />
and the public, including the website, and introducing new<br />
ways of communicating with our key audiences. But that’s<br />
not all we do, we also provide support to the fundraising<br />
team for all their communications requirements, look after<br />
all media activities and run direct mail campaigns to bring in<br />
fundraising dollars.”<br />
In line with each <strong>Bulletin</strong> published over the past two years,<br />
an article from the CEO updates us on the Society’s help and<br />
involvement in the administration of the MS Society of South<br />
Australia and the Northern Territory. The General Manager of<br />
Member Services, Sue Shapland, updates us on the significant<br />
changes in the delivery of essential services to people with<br />
disabilities taking place with the introduction of the NDIS and<br />
My Way programs. Sue has also included a round-up of the<br />
latest research and has written extensively with regard to new<br />
clinical treatments. The Occupational Therapy Department<br />
has included several excellent articles on making life easier at<br />
home. The Physiotherapy Department introduces you to the<br />
Balance Master. Counsellor, Leonie Wellington, talks about<br />
self-compassion and there are the personal experiences from<br />
your enduring favourites, Narelle, Ros, and Dr Ong along with<br />
the latest news from the Outreach Groups.<br />
The Editorial Committee hopes you enjoy this special 150th<br />
edition of your <strong>Bulletin</strong>. Over the years, members of the Editorial<br />
Committee, past and present, have set out to cover the wide<br />
range of concerns people living with multiple sclerosis face.<br />
Today, the Editorial Committee is a working committee with<br />
each member responsible for generating the quality content<br />
we publish for an increasingly sophisticated readership. It is<br />
each of these people, experts in their particular field, that<br />
keep the <strong>Bulletin</strong> alive and relevant. It is the Society’s Brand &<br />
Communications Department that designs and publishes the<br />
magazine and animates it on the website. The Society is now<br />
firmly entrenched in the business of communicating with all<br />
of our key audiences and beyond. We have come a long way<br />
in the past 29 years!<br />
2 <strong>Autumn</strong> <strong>2015</strong> The MS Society of Western Australia The MS Society of Western Australia <strong>Autumn</strong> <strong>2015</strong> 3
From the desk of the CEO<br />
Marcus Stafford<br />
A Tale of Two Cities. In the 19th Century that was of course,<br />
the name of a book penned by Charles Dickens. In the 21st<br />
Century and in this article for the <strong>Bulletin</strong>, I have taken the<br />
liberty of plagiarising that memorable title with a tale of two<br />
very different Australian cities - Adelaide and Perth. More<br />
specifically, the tale of those two very different MS Societies,<br />
each working hard to fulfil their charter of service provision to<br />
people with multiple sclerosis.<br />
At face value Adelaide and Perth have many similarities. They<br />
are coastal cities supporting a mid-sized population, keen<br />
not to get sucked into a Sydney and Melbourne culture and<br />
mentality. Each is framed by hills, with plenty of beaches,<br />
wineries and restaurants. Each is fiercely parochial about its<br />
cricket and footy teams. The staff are the same too, working<br />
hard and largely passionate about either directly or indirectly<br />
serving people with disabilities. Adelaide has a few more<br />
churches than us, but other than that, pretty similar don’t<br />
you reckon?<br />
Yet the Societies find themselves at very different stages of<br />
evolution. After looking at the history of both, its reminded me<br />
of that movie Sliding Doors. Each Society has with the very<br />
best of intentions, made different calls and decisions along<br />
the way, and bit by bit they have shaped reality. These same<br />
sliding doors exist with the respective State Governments<br />
as they have grappled with the challenges of establishing<br />
priorities and allocating funding.<br />
So, where do we find ourselves today? MSWA has an annual<br />
revenue of $35 million with around 465 staff. MSSANT on<br />
the other hand has revenues of around $8 million and around<br />
100 staff. MSWA’s balance sheet shows around $18 million<br />
in net assets and is trading strongly, while MSSANT has little<br />
to fall back on and has struggled. Rather than sliding doors,<br />
it is well known that MSSANT was at risk of closing its doors<br />
permanently in the middle of last year.<br />
So what? Does any of this matter? Well, I believe it does!<br />
Our first consideration has to be for the people that the<br />
Societies are here to serve, people with multiple sclerosis.<br />
We may choose where we wish to live, we may choose where<br />
we wish to work and we may choose our sporting teams. But<br />
people with multiple sclerosis did not choose their diagnosis.<br />
Indeed they have done absolutely nothing to court or attract<br />
their condition. So, it only seems fair to me that as in Perth,<br />
folk struggling with their daily challenge in Adelaide should<br />
have a lifetime friend and supporter like the MS Society to<br />
help them on their journey.<br />
And that is where we come in!<br />
I have received overwhelming support from our Members<br />
who have clearly expressed their view that they are delighted<br />
that we are doing our bit to see if we can have a positive<br />
effect on the MS Society of South Australia and the Northern<br />
Territory’s sliding doors.<br />
Early progress has been pleasing and the financials are ahead<br />
of budget with some growth in Client services.<br />
Our goal of course is to build a strong Society for people<br />
with multiple sclerosis as we have done in Western Australia.<br />
There is no complacency in those words. Firstly, the challenge<br />
in South Australia is not underestimated and secondly the<br />
journey in WA never stops. Well, until we find the cure anyway.<br />
At which time I will sit on a sun lounger somewhere and raise<br />
a glass to the fact that the world is a better place.<br />
But how does the tale of two cities end? If I can take<br />
author’s licence I will have both Societies and cities strongly<br />
flourishing. And of course the obligatory last line “…and they<br />
all lived happily ever after!”<br />
Do you want to receive 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 and the <strong>Bulletin</strong> magazine online.<br />
Just email bhavna.jagtiani@mswa.org.au or call 6454 3114<br />
and let us know your current email address.<br />
A message from the General Manager<br />
– Member Services Sue Shapland<br />
“Try to be a rainbow in someone’s cloud.”<br />
Maya Angelou<br />
Well here we are in <strong>2015</strong> and it’s March already! I hope you<br />
are surviving in the heat and rather weird weather we have<br />
been experiencing.<br />
Once again, 2014 was a busy but successful and rewarding<br />
year for MSWA and Member Services. We continued to grow<br />
our services and hours delivered for Members; both in the<br />
metro and some regional areas.<br />
In December we relocated our Southside Group and other<br />
programs to bigger premises in Rockingham. This is really<br />
exciting as the additional space for physiotherapy and<br />
massage in particular allows us to expand our programs and<br />
provides a base for the Health Team to see Members in the<br />
area. We are now moving ahead with building approval for the<br />
proposed Bunbury service hub, we will keep you informed as<br />
we make progress there.<br />
The Balance Master is now being used at Wilson for<br />
assessments and programs for people experiencing balance<br />
problems. Learn more about the Balance Master on page 14.<br />
The Health Team is busy planning some new and exciting<br />
programs for Members in <strong>2015</strong> and the well-received<br />
information seminar series dates will be circulated soon. The<br />
team continues to try and source the latest information from<br />
national and international sources on all aspects of living<br />
with multiple sclerosis, effective symptom management<br />
and useful gadgets that can really make a difference with<br />
everyday chores, work or study.<br />
Stay In Focus groups<br />
A message from the group members<br />
Our Stay In Focus groups offer you the opportunity to ask<br />
questions relevant to your situation and to learn how others<br />
deal with these issues. You will also learn where to access<br />
more in-depth information and what courses are on offer.<br />
Above all, come and share a laugh with friends, old and<br />
new. Monthly meetings are held at Wilson or Beechboro<br />
Lodge and group members invite you to come and join<br />
them for a cuppa and a chat.<br />
The Occupational Therapy Department also offers a wide<br />
range of courses to Members at no cost, dealing with issues<br />
from stress to clutter and all manner of things in between.<br />
These are usually offered at our focus group meetings,<br />
depending on what Members tell us they want to learn about.<br />
There is certainly significant and ongoing change in WA<br />
across both the health and disability sectors. The NDIS and<br />
NDIS My Way trial sites are up and running; read our updates<br />
on page 8 and keep a look out for more updates in future<br />
editions. The long awaited and very impressive Fiona Stanley<br />
Hospital is now open and the new children’s and Midland<br />
Hospitals are well underway.<br />
In <strong>2015</strong> we will see at least two more therapies for relapsingremitting<br />
multiple sclerosis become available on the PBS;<br />
Plegridy and Lemtrada. There is now an international focus on<br />
research into progressive multiple sclerosis and we eagerly<br />
await updates.<br />
Our annual Member Services Survey is currently being<br />
collated. Thanks go to everyone who has responded. I<br />
look forward to reading the report, sharing the results with<br />
staff and Members, and using the results to assist with<br />
service planning.<br />
Please remember, the Member Services staff are here<br />
to help you with your enquiries about multiple sclerosis,<br />
treatments, research, our programs and supports, and<br />
more. As you know, multiple sclerosis affects people<br />
in different ways so we try to tailor the information for<br />
your situation. Please don’t hesitate to give us a call on<br />
9365 4888 or send us a message via the contact us<br />
link on our web page.<br />
FOCUS GROUP DETAILS:<br />
WILSON GROUP<br />
Time: 10.30am – Noon<br />
Day: 4th Tuesday of the month<br />
Where: 29 Parkhill Way, Wilson<br />
BEECHBORO GROUP<br />
Time: 10am – Noon<br />
Day: 3rd Thursday of the month<br />
Where: Cnr of Amazon Drive and Darwin Crescent, Beechboro<br />
If you are interested in attending either of the groups, or<br />
would like more information, please contact Heather Mearns<br />
on 9365 4894 or email heather.mearns@mswa.org.au<br />
4 <strong>Autumn</strong> <strong>2015</strong> The MS Society of Western Australia The MS Society of Western Australia <strong>Autumn</strong> <strong>2015</strong> 5
Round-up of research<br />
and other items of interest<br />
Sue Shapland RN, BN<br />
Here we bring you brief summaries on research updates<br />
found online from around the world.<br />
From WA Neuroscience<br />
Research Institute (WANRI):<br />
Stomach ulcer bug may<br />
protect against MS<br />
WA researchers have found<br />
evidence that the stomach ulcer<br />
bacterium, Helicobacter Pylori<br />
(H. pylori), is associated with a<br />
lower risk of multiple sclerosis.<br />
This adds to existing evidence of<br />
the role the ‘hygiene hypothesis’<br />
plays in autoimmune disorders.<br />
Clinical Professor Allan Kermode and Dr Marzena Fabis<br />
Pedrini at WANRI, collaborated with WA Nobel Laureate,<br />
Professor Barry J Marshall AC, to show that prior infection<br />
with the ‘stomach ulcer bug’, H. pylori, is associated with a<br />
lower risk of developing multiple sclerosis.<br />
C/Professor Kermode said, “The results from this research<br />
may indicate that H. pylori has a protective effect against<br />
MS and also bolsters evidence for the role of the hygiene<br />
hypothesis in autoimmune diseases.”<br />
Their study looked for evidence of prior infection with H. pylori<br />
in blood samples of 550 people with multiple sclerosis and<br />
compared the results with 299 age and sex matched healthy<br />
individuals from the Busselton Community Health Study.<br />
Their study showed that H. pylori infection was more<br />
common in women who didn’t have multiple sclerosis and<br />
less common in women with multiple sclerosis indicating that<br />
the presence of a H. pylori infection may reduce the risk of<br />
developing multiple sclerosis. The same association was not<br />
seen in men.<br />
The article goes on to say, “Understanding exactly how past<br />
infections such as H. pylori influence the immune system<br />
could pave the way for designing new drugs that mimic<br />
this effect, to treat or prevent multiple sclerosis and other<br />
autoimmune diseases.”<br />
From MS Research Australia:<br />
PrevANZ Update<br />
This trial, supported by funds from MSWA, is testing if<br />
variable doses of oral vitamin D supplements can prevent<br />
MS in those at risk of developing the condition. Twenty sites,<br />
across Australia and NZ, including WA, are recruiting. There<br />
are currently 54 participants enrolled.<br />
From MS International Foundation:<br />
Ten-year prognosis in multiple sclerosis: a better<br />
outcome in relapsing-remitting patients but not in<br />
primary progressive patients European Journal of<br />
Neurology 2014 by Kerbrat A et al.<br />
This population-based study reported a lower risk of disability<br />
progression at a 10 year follow-up in the relapsing-remitting<br />
multiple sclerosis (RRMS) group than previously reported.<br />
A total of 278 patients were reviewed and 80% of RRMS<br />
patients had received therapies for at least six months.<br />
The researchers sought to provide a 10 year history of<br />
multiple sclerosis from clinical onset, from the time of the<br />
first approved disease modifying therapies. They suggest<br />
this information will affect the prognosis given to people with<br />
RRMS and that the therapies may improve outcomes through<br />
reduced disability progression.<br />
UK MS Trust Site:<br />
How common are tremors in<br />
people with multiple sclerosis?<br />
Prevalence and characteristics<br />
of tremor in the NARCOMS<br />
multiple sclerosis registry: a<br />
cross-sectional survey Rinker<br />
JR 2nd, Salter AR, Walker H, et al.<br />
A tremor is an involuntary, uncontrolled movement and<br />
commonly reported as a multiple sclerosis symptom. Little is<br />
known about how common it is or how severe tremors are.<br />
This study aimed to learn more about tremors in people with<br />
multiple sclerosis through a large survey in the USA.<br />
Five hundred and fifty-two participants completed a survey<br />
providing information about their tremors such as part<br />
and side of the body affected, family history of tremors<br />
and if they were taking any treatments. The study found<br />
that approximately 45% of people with multiple sclerosis<br />
reported having some level of tremor. A quarter said that they<br />
experienced a tremor that had an impact on their daily lives.<br />
The authors concluded that their survey highlights that<br />
tremors are common in people with multiple sclerosis and<br />
can have a major impact on some people, affecting their work<br />
and daily lives.<br />
Can people with multiple sclerosis be disease free in the<br />
long term? Evaluation of No Evidence of Disease Activity in<br />
a 7-Year Longitudinal Multiple Sclerosis. Cohort Rotstein DL,<br />
Healy BC, Malik MT, et al<br />
With new and more effective<br />
drugs now available for relapsingremitting<br />
multiple sclerosis a new<br />
treatment goal is emerging. No-<br />
Evidence-of-Disease-Activity<br />
(NEDA) represents a high level<br />
of treatment effectiveness<br />
suggesting that the treatment<br />
has resulted in a complete remission.<br />
Two hundred and nineteen participants were assessed over<br />
seven years with yearly MRI scans and six monthly reviews.<br />
NEDA was defined as no relapses, no sustained increase in<br />
disability (EDSS) score and no new or enlarging lesions on<br />
an MRI.<br />
The study found that after one year, 46% of participants had<br />
NEDA but at seven years only eight per cent of participants<br />
were NEDA. The researchers concluded that the ability<br />
of NEDA to predict future disability levels needs further<br />
investigation and NEDA could also be used to evaluate the<br />
effectiveness of new multiple sclerosis drugs in trials.<br />
Read more at:<br />
mswa.org.au/<br />
researchupdate<br />
Does tailored treatment help to<br />
improve cognitive symptoms?<br />
Mattioli F, Stampatori C, Bellomi<br />
F, et al.<br />
About half of all people with multiple sclerosis experience<br />
problems at some point in time with aspects of thinking such<br />
as memory, concentration or problem solving. Cognition is<br />
the term used to describe all aspects of thinking.<br />
An Italian study of 41 people with relapsing-remitting<br />
multiple sclerosis used a collection of tests that examine<br />
memory, recall, attention, processing speed and language.<br />
All participants had a problem with at least one of these<br />
cognitive areas.<br />
Participants were randomly allocated to receive either a<br />
treatment specifically targeting the cognitive problem they<br />
experienced, or a general psychological intervention. The<br />
study then compared the two to see which was most effective.<br />
The study found that specific treatment and cognitive training<br />
significantly reduced the cognitive problems the participants<br />
experienced. They concluded that the intensive course of<br />
tailored treatment is more effective than a general treatment.<br />
From the International<br />
Journal of MS Care:<br />
Recommendations from the<br />
International MS Falls Prevention<br />
Research Network. Michelle<br />
Cameron et al; International<br />
Journal MS Care. 2014; 16:203-207.<br />
Following their meeting in Canada in 2014, this network<br />
identified recommendations for research protocols, “Whom to<br />
target for Falls Prevention Trials”. The group was established<br />
to help meet the need to develop and evaluate falls prevention<br />
interventions for people with multiple sclerosis.<br />
They recommended that research projects should include<br />
people of all ages, with or without mobility aids, with or without<br />
cognitive impairment, and with a history of a fall in the previous<br />
year. As people with multiple sclerosis are at a higher risk of<br />
falls for various reasons, studies and program design, and<br />
evaluation has been complex. These recommendations will<br />
assist researchers and increase participation in various projects.<br />
6 <strong>Autumn</strong> <strong>2015</strong> The MS Society of Western Australia The MS Society of Western Australia <strong>Autumn</strong> <strong>2015</strong> 7
National Disability Insurance<br />
Scheme Hills trial site<br />
January <strong>2015</strong> update<br />
Multiple sclerosis<br />
treatment update<br />
Sue Shapland<br />
The launch of the National Disability Insurance Scheme<br />
(NDIS) on 1 July 2013 was the most significant reform of the<br />
Disability Sector in Australia ever undertaken. It is expected<br />
that this scheme will allow more equitable access to funding<br />
for services and supports for everyone living with permanent<br />
disability, subject to eligibility.<br />
The WA NDIS trial site in the Hills commenced on July 1,<br />
2014; the shires included in the staged rollout were the City<br />
of Swan, then Kalamunda and then Mundaring.<br />
To be eligible to participate, the individual must have a<br />
permanent disability which has a big impact on that person’s<br />
day to day life and their ability to participate in the community.<br />
The person must also demonstrate that they will need supports<br />
for the rest of their life. A link for the Eligibility Checking tool is<br />
included in the website and contact details below.<br />
In our spring edition of the <strong>Bulletin</strong>, we advised that in WA two<br />
separate models of the scheme are being trialled in selected<br />
areas of the State. One is Commonwealth-based and the<br />
other is State-based. This is so that the best features of each<br />
can be considered in the development of the final version of<br />
the scheme.<br />
People living in areas of WA currently not included in the trial<br />
sites are still able to apply for funding through the existing WA<br />
Disability Services Commission model.<br />
Since the July 2014 launch in Western Australia, there have<br />
been some significant achievements:<br />
• 103 participants had their support plans approved by the<br />
end of September 2014 in the Perth Hills area and around<br />
500 additional participants were expected to have their<br />
plans approved before the New Year;<br />
• 449 participants living in the Lower South West had<br />
approved My Way plans at the end of October 2014;<br />
• NDIS chairman Bruce Bonyhady said that the scheme was<br />
on time, on budget and progressing well.<br />
NDIS contact details:<br />
For people living in the local government areas<br />
of Swan, Kalamunda and Mundaring:<br />
NDIS: ndis.gov.au<br />
Telephone: 1800 800 110<br />
Eligibility Check: myaccesschecker.ndis.gov.au/<br />
Some key findings of the report on the sustainability of the<br />
scheme:<br />
• Participation satisfaction remains very high at 1.67 on a<br />
scale of -2 (very poor) to +2 (very good);<br />
• 10,939 people in the trial sites Australia-wide have been<br />
found to be eligible for the NDIS with 8,880 having<br />
approved individualised support plans in place by the end<br />
of September 2014;<br />
• More than $395 million has been committed to these<br />
participants;<br />
• The average package cost in the first year of the scheme<br />
is approximately $35,207; below the funding expectation<br />
of $36,750.<br />
MSWA will be providing ongoing information to our Members,<br />
particularly those living in the affected areas and we are<br />
actively seeking feedback from participants to help us<br />
understand how things are working.<br />
Information sessions for all concerned are currently being<br />
planned and people living in areas covered by the NDIS will<br />
be notified of these in due course.<br />
We are here to assist our Members to access information<br />
about the scheme and NDIS supports. If you would like<br />
any further information, please contact Mark Douglas,<br />
Project Officer for Member Services, on 9365 4824.<br />
NDIS contact details:<br />
For people living in the South Western Region<br />
(Busselton and surrounds):<br />
disability.wa.gov.au/wa-ndis-my-way/<br />
wa-ndis-my-way/wa-ndis-my-way-model/<br />
Telephone: 1800 996 214<br />
Two more disease modifying therapies for relapsing multiple<br />
sclerosis will soon be available in Australia with PBS approval.<br />
New therapies are always welcome as they increase the<br />
range of options available.<br />
The first treatment, the interferon’s (Avonex®, Betaferon® and<br />
Rebif®), only became available from the late 1990s in Australia.<br />
They were then joined by Copaxone®. Prior to these, no treatments<br />
were available. These self-injectable therapies are all still in use.<br />
Over the past six years or so, a range of other effective<br />
products, both oral and intravenous, have joined the armoury.<br />
Tysabri® was the first in a new class of drug, the “monoclonal<br />
antibody” and given by monthly infusions. Then Gilenya®,<br />
the first oral treatment became available. This has now been<br />
joined by Tecfidera® and Aubagio®.<br />
Over the years, ongoing trials, when compared with the<br />
natural history of multiple sclerosis before treatments, have<br />
shown that the greatest benefit is achieved by commencing<br />
treatment early. The inflammatory process and relapses in<br />
the early stages of MS result in damage that in the long term<br />
correlates with disability levels.<br />
Finding the right therapy, both tolerable and effective at<br />
reducing relapses and disease activity, is a process based on<br />
informed decision making with your neurologist. Some people<br />
may have to switch therapies as things change.<br />
The latest two therapies soon to become available are:<br />
• Lemtrada ® (alemtuzumab): It is a monoclonal antibody for<br />
treating relapsing forms of MS in adults with active disease.<br />
It works by depleting the B and T cells in the circulation.<br />
Update on MSWA funded research projects<br />
This year MSWA contributed a record $1.25 million to fund<br />
Australian research into finding the cause, better treatments<br />
and a cure for MS. We are committed to investing in research<br />
as it provides people living with MS hope for a future free of MS.<br />
Here are some of the research projects we’ve supported:<br />
The PrevANZ Vitamin D Prevention Trial<br />
PrevANZ is a wold-first clinical trial that aims to test<br />
whether vitamin D supplementation can prevent MS<br />
developing in people who have had a first attack. PrevANZ<br />
commenced recruiting in June 2013. The trial will run over<br />
four years and it is expected that results will be available in<br />
2017. PrevANZ will test three dosage levels of daily vitamin<br />
D3 supplements against a placebo in a total of 240 people.<br />
Enhancing Balance in MS with Prof Soumya Ghosh<br />
This WA study aims to evaluate whether the addition of brain<br />
stimulation to structured balance treatment programs will<br />
improve gait and balance and mobility in people with MS.<br />
This infusion is given daily for five days and then 12 months<br />
later for three days. Trials have shown that many patients only<br />
required two rounds of treatment.<br />
As with all treatments there may be side effects. These can<br />
range from infusion reactions to more serious auto immune<br />
reactions including over or under reactive thyroid disease and<br />
a rare blood disorder.<br />
People using this therapy require monthly monitoring via blood<br />
tests for up to four years after the last infusion. Whilst this therapy<br />
won’t be for everyone, it is an effective therapy for consideration.<br />
• Plegridy ® (peginterferon beta-1a): It is a self-injectable<br />
therapy for relapsing multiple sclerosis. This interferon<br />
beta-1a is pegylated which extends its half-life allowing<br />
less frequent dosing, i.e. every two weeks. It is the first<br />
pegylated interferon approved and combines efficacy with<br />
a favourable safety profile to the existing interferons.<br />
Fortunately, in Australia, we have access to all of the approved<br />
multiple sclerosis treatments. This isn’t the case in many<br />
countries, reducing options for people with multiple sclerosis<br />
and their doctors.<br />
There are still a number of therapies in clinical trials and more<br />
exciting is the prospect of some treatments in the future for<br />
progressive multiple sclerosis.<br />
If you would like any more information on multiple sclerosis<br />
therapies, please call 9365 4888 and ask for a MS Nurse<br />
or speak with your neurologist who can provide you with<br />
up to date information on the therapies and ongoing trials.<br />
The Australia & New Zealand NMO Collaboration<br />
Neuromyelitis optica (NMO) is a rare neurological condition<br />
which presents in approximately one percent of relapsingremitting<br />
cases of MS. The Australian and New Zealand NMO<br />
Collaboration seeks to identify the genetic markers which cause<br />
a person to present with NMO, over someone who does not.<br />
<strong>2015</strong> Vitamin D metabolites project<br />
with Prof Robyn Lucas<br />
The project will study the link between vitamin D and MS<br />
in more detail. In the blood, most vitamin D is transported<br />
tightly bound to a protein. It was previously thought that this<br />
bound vitamin D was the most important thing to measure.<br />
How much, and how tightly, vitamin D is bound to the protein,<br />
depends on your genes. This might explain why some people<br />
with low vitamin D don’t have any increased risk of MS,<br />
while others do. This may provide the closest association<br />
with the risk of getting MS, but no one has looked.<br />
8 <strong>Autumn</strong> <strong>2015</strong> The MS Society of Western Australia The MS Society of Western Australia <strong>Autumn</strong> <strong>2015</strong> 9
Safety during meals<br />
Michelle Searle<br />
Hand therapy<br />
for function<br />
Swallowing impairment, or dysphagia as it is known medically,<br />
occurs in about one third of people with multiple sclerosis.<br />
These problems can have a negative impact on the person’s<br />
safety and enjoyment during meals.<br />
Swallowing difficulties in multiple sclerosis are caused<br />
by demyelination of the brainstem which interrupts nerve<br />
impulses to the muscles involved in swallowing. This may<br />
impact on the strength, range or rate of muscle movements.<br />
As well as interrupted muscle activation, sensory changes<br />
can affect the person’s ability to trigger a swallow. These<br />
problems not only confound a person’s safety leading to<br />
distress, but can also lead to considerable embarrassment<br />
and social withdrawal.<br />
As 31 pairs of muscles are involved in the swallowing process,<br />
a person may continue to swallow relatively normally with<br />
considerable denervation of muscles involved.<br />
When swallowing is affected however, it can have significant<br />
impact on safety during meals. Difficulties can be experienced<br />
during any of the three phases of swallowing: oral, pharyngeal<br />
or oesophageal. Firstly, there may be difficulty chewing food<br />
or problems in moving food around the mouth. When getting<br />
ready to swallow, it can be hard to move food to the back<br />
of the mouth. Triggering the swallow may be delayed or<br />
effortful, and may result in coughing. Food may also remain<br />
in the mouth after the swallow.<br />
As food travels down the throat, the person may find that<br />
some of it sticks to the walls and is hard to clear. Sips of<br />
water can help to dislodge these particles. If the valve at the<br />
bottom of the stomach is not working properly, food may be<br />
regurgitated or reflux symptoms may result.<br />
It is important to remember that these symptoms, like any<br />
other multiple sclerosis symptoms, can get worse or improve<br />
after a short time. In addition, fatigue may increase symptoms<br />
later in the day. Stress, pain, depression and cognitive<br />
changes can place a person at further risk of swallowing<br />
related problems.<br />
Long term risks of swallowing problems may include<br />
malnutrition, dehydration, suffocation, choking and pneumonia,<br />
which can be life threatening or result in a lengthy recovery<br />
process. People at greatest risk are those who are dependent<br />
on feeding, oral care, have a number of different disorders,<br />
have a compromised immune system or are on a number of<br />
different medications.<br />
As a result of this significant risk, prevention is a priority of<br />
any management plan. Working with a speech pathologist<br />
and other health care professionals to develop a swallowing<br />
regime can significantly reduce the risks associated with<br />
dysphagia. This process involves assessments to determine<br />
the best strategies to maintain safe swallowing. They are<br />
designed to support a person’s independence and promote<br />
personal management of swallowing issues.<br />
If a person’s swallowing difficulties progress further, they<br />
may not be able to manage normal food or drink safely. In this<br />
case, the speech pathologist may recommend a modified diet<br />
or thickened fluids. These will help the muscles involved in<br />
swallowing to safely transfer food and drink into the stomach,<br />
therefore protecting the lungs. By learning to modify diets, a<br />
person can maximise safety, maintain health and maximise<br />
enjoyment during mealtimes.<br />
In a small number of cases, swallowing can become too<br />
dangerous and a PEG feeding tube may be recommended.<br />
This allows liquid meals to be fed directly into the stomach.<br />
Some safe swallow strategies include:<br />
• eating whilst sitting in a 90 degrees upright position and<br />
remaining in that position for 30 minutes after your meal;<br />
• taking small bites and mouthfuls, and chewing food<br />
thoroughly;<br />
• eating in a quiet environment free from distractions, i.e.<br />
turning off the TV and avoiding talking;<br />
• tucking your chin slightly downward toward your chest on<br />
the swallow;<br />
• drinking plenty of water throughout the day;<br />
• adding extra sauce and gravy to your meals to help transport<br />
food safely into the throat; and<br />
• checking inside your mouth after your meal to make sure<br />
no food is remaining.<br />
If you are experiencing any difficulties with your swallow,<br />
please do not hesitate to contact a speech pathologist.<br />
A full time speech pathologist is employed at MSWA,<br />
based at Wilson, and can be contacted on 9365 4871 or<br />
at michelle.searle@mswa.org.au<br />
Research is unclear as to how many people with multiple<br />
sclerosis have issues with their hands and upper limbs. This<br />
is partly because different measures may be used to assess<br />
hand function. Some people report a lack of strength, reduced<br />
dexterity, change in sensation, pain or tremors. Tremors can be<br />
on resting or on movement. Change in sensation can include<br />
the arm feeling numb, tingly, and sensitive to hot or cold, or<br />
it could just not feel like it should. Hand issues vary but either<br />
way, they can get in the way of doing the things you want to do.<br />
The MSWA Occupational Therapy (OT) Department has been<br />
considering establishing a hand therapy clinic for some time.<br />
We recognise this need as our hands are such a basic aspect<br />
of functioning. We need them to reach items, carry things,<br />
write, type, shake hands and so on.<br />
Good hand function requires the wrist, elbow and shoulder to<br />
work together in synchrony in order to provide stability and<br />
smooth movements. It also requires a good sensory system<br />
so we can feel if something is hot or cold, how firmly we are<br />
holding something, and to tell us where our arms and hands are.<br />
Food! It’s a huge part of our social calendar and the reason<br />
the kitchen was invented. For some people, cooking is<br />
a way to connect with family and friends, to provide for<br />
children or simply for the love of food.<br />
Sometimes challenges such as tremors, fatigue or<br />
decreased strength in the hands form a barrier that<br />
prevents us from being able to do the things we love in<br />
the kitchen. If this sounds like you, you may benefit from<br />
a discussion with a MSWA Occupational Therapist. Along<br />
with the new Hands Clinic which focuses on working with<br />
you towards engagement in meaningful activities, we also<br />
have a range of trial equipment that can help make the<br />
task of cooking a little bit easier.<br />
Here are some examples of how we have assisted Members<br />
in the past:<br />
• Modifying the activity such as breaking down a large<br />
cooking task into a smaller, more manageable task that<br />
still fits within a busy schedule;<br />
We are pleased to advise that the OT Team has now set up<br />
a Hands Clinic designed to help people with specific hand or<br />
upper limb issues. The program will entail an assessment,<br />
identifying your goals and setting up individualised tasks<br />
with weekly sessions to work on strength, dexterity and<br />
review sensation as required. The OT will use a variety<br />
of strategies including compensatory and rehabilitative<br />
strategies. At this point we cannot provide an in-home service,<br />
however assessment and recommendations are offered.<br />
The Hand Clinic will run in the Occupational Therapy<br />
Department at Wilson on Wednesday mornings.<br />
If you are interested or would like more information,<br />
please contact Amanda King on 9365 4891 or at<br />
amanda.king@mswa.org.au<br />
Getting back into the kitchen<br />
• using a kitchen perch stool so that someone is able to sit<br />
whilst cooking or doing the dishes, and using a kitchen<br />
trolley to help bring the food to the table;<br />
• using a range of built up,<br />
lightweight, angled cutlery to<br />
help with meal prep and eating;<br />
• different chopping boards with attachments to make<br />
food preparation easier;<br />
• tap turners, can, bottle and jar openers, and drink aid<br />
systems;<br />
• using an instant kettle to make a cup of tea when friends visit.<br />
Press one button and it fills the cup to whatever level you<br />
choose and to whatever temperature you have pre-set; and<br />
• utilising a Thermomix which is an all-in-one appliance<br />
that can chop, blend, grate, cook, stir and mix food, and<br />
more. It costs almost $2,000, however it can be trialled<br />
and hired from the Independent Living Centre WA to see<br />
if it will be beneficial to you.<br />
There are a lot of options for anyone who is interested, to<br />
cook or prepare meals. The national Independent Living<br />
Centre website is a good resource if you want to search for<br />
possible solutions to challenges with cooking or any other<br />
meaningful occupation. For further information, please<br />
contact the Occupational Therapy Department on 9365 4888.<br />
10 <strong>Autumn</strong> <strong>2015</strong> The MS Society of Western Australia The MS Society of Western Australia <strong>Autumn</strong> <strong>2015</strong> 11
Help us stand up to MS in <strong>2015</strong>!<br />
The Multiple Sclerosis Society of WA (MSWA) holds many events throughout the year.<br />
Help us stand up to MS by joining us at one of our many events - you can volunteer or take part!<br />
Color Me Rad<br />
Saturday, 28 March, Curtin University<br />
Color Me Rad 5k is coming to Perth, bringing with it a tsunami of colour. You’ll<br />
start off in a pure white shirt and get enough colour bombs thrown at you<br />
whilst running to wind up looking like a packet of Skittles. The event is free for<br />
all, young and old, and participants seven and under run for free. MSWA is the<br />
event’s charity partner and part of the proceeds from the event will go towards<br />
helping Western Australians living with MS. Registrations close on 27 March.<br />
The Beyond Bank Night Ride for MS<br />
Friday, 10 April, Wilson/Swan river<br />
Enjoy the sounds and sights of the beautiful Swan River by the light of night!<br />
This bike ride is a brand new, unique event for Perth. You’ll ride along seldom<br />
travelled pathways and discover views of Perth along the way, many of which<br />
will even surprise most Perth residents! Decorate your bikes with lights and<br />
glow sticks and joins us for a 40 or 70km ride.<br />
Rotary Team Challenge<br />
Saturday, 2 May, Northam/Swan Valley<br />
The Rotary Team Challenge offers you the opportunity to participate in an<br />
exciting team event that takes you through the picturesque West Australian<br />
countryside along a heritage trail that follows the path of the Eastern Railway<br />
that formerly linked Fremantle to York in the late 1880s. The event will be run<br />
over one day and you can choose to walk, run or cycle in the 22, 50 or 75km<br />
categories. The distance and how you participate is up to you!<br />
Joondalup Swim for MS<br />
Sunday, 13 September, Joondalup<br />
The Joondalup Swim is back for <strong>2015</strong> and set to break some new records!<br />
Points are awarded for every $25 raised and the km’s swum by the team.<br />
Funds raised from the ten-hour relay challenge will enable MSWA to continue<br />
to provide support and services to people with MS.<br />
Ocean Ride for MS<br />
Sunday, 18 October, Fremantle/Hillarys<br />
The Ocean Ride for MS is back! Join for a 70km, 50km, or 30km ride from<br />
Fremantle, or enjoy a scenic 10km family ride from Scarborough and finish<br />
in beautiful Hillarys. Last year’s event saw an incredible $319,000 raised<br />
for people living with MS! There will also be a special stationary cycle<br />
challenge exclusively for Members! Taking place over a ten week period<br />
during physiotherapy, Members will create teams and set a goal to complete.<br />
The kms ridden each week will be recorded with Members who participate<br />
receiving medals for their participation at the event.<br />
Stadium Stair Race<br />
Saturday, 31 October, Domain Stadium<br />
Get set for <strong>2015</strong>’s Spooky Halloween themed Stadium Stair Race! With 1,200,<br />
2,750 or 5,800 stairs to choose from, this unique race will a memorable<br />
experience that is unmatched by any other event in Perth! Last year’s event<br />
saw an amazing $42,785 raised for people living with MS in Western Australia.<br />
Step Up for MS<br />
Sunday, 7 June, Perth<br />
Looking for a challenge? Run, walk or crawl the 1,103 stairs, that’s 53 flights,<br />
to the top of Perth’s tallest and most iconic building, Central Park! Last year<br />
we raised a phenomenal $212,385 for Western Australians living with MS,<br />
help us step it up this year by taking part in this great event.<br />
Helping hands are always welcome!<br />
If you are interested in volunteering at any of these events, get in touch with the Events<br />
Team at events@mswa.org.au or call them on 6454 3114. Alternatively, just come on<br />
down to any of these events and show our enthusiastic participants some support!<br />
(08) 6454 3131 events@mswa.org.au mswa.org.au
The Smart Equitest<br />
Balance Master<br />
Marilyn Sylvester & Oliver Guttinger<br />
Are you too hard<br />
on yourself?<br />
Leonie Wellington<br />
Balance impairment and falls are frequent in people with<br />
multiple sclerosis and might occur even at the earliest stage<br />
of the condition. The human body uses three sensory inputs<br />
to maintain proper balance. They are: vestibular (inner ear<br />
system), somatosensory (muscles, tendons, joints) and vision<br />
(eyes). These sensory inputs interact with the brain which<br />
drive and control our motor functions.<br />
While there are many varied tests which physiotherapists may<br />
use to assess both static and dynamic balance, the Balance<br />
Master can accurately detect the person’s responses and,<br />
record and illustrate the outcomes rapidly. This base line<br />
of assessments defines the initial assessment and further<br />
testing will track the person’s balance status, assisting the<br />
therapist in determining an appropriate therapy program.<br />
The Smart Equitest Balance Master uses a dynamic force<br />
plate with rotation and translation capabilities to quantify the<br />
vertical forces exerted through a person’s feet. This measures<br />
the position of centre of gravity and postural control. The<br />
dynamic visual surround also measures a person’s use of<br />
visual information to maintain their balance (Smart Balance<br />
Master 2013). It provides objective assessment of balance<br />
control and postural stability by utilising a number of<br />
assessment protocols. These protocols make up the complete<br />
assessments known as Computerised Dynamic Posturography<br />
which is considered the highest quality assessment available<br />
to determine the underlying impairments related to balance<br />
problems. The Balance Master provides retraining of the<br />
sensory and voluntary motor control of balance with visual<br />
feedback on either a stable or unstable support surface and<br />
in a stable or dynamic visual environment (Smart Balance<br />
Master: NeuroCom Systems Products).<br />
Introducing Shannon<br />
Shannon is a newly graduated physiotherapist from Curtin University, who joins the<br />
MSWA team this year on a full-time basis. She comes from the country town of<br />
Geraldton but has lived in Perth since commencing her studies in 2011. Shannon<br />
loves sports, being with family and friends, and helping others. Before joining the<br />
Physiotherapy Team, Shannon worked as a Care Support Worker for the MS Society,<br />
providing in-home care for just over two years during her studies.<br />
Shannon will be splitting her time between various facilities including Wilson,<br />
Beechboro, Wangara and Clarkson. She is full of enthusiasm and is excited to work<br />
with the wonderful Physiotherapy Team and MSWA Members.<br />
The MSWA Physiotherapy Department will engage with<br />
Members in these programs to facilitate restoration of balance,<br />
working in tandem with other customised exercise programs<br />
to improve strength, cardiovascular fitness, walking capacity,<br />
general retraining in the gymnasium, circuit programs and<br />
home programs.<br />
The Balance Master was leased in mid-2014 and is housed in<br />
a designated office at Wilson. Selected staff members have<br />
received training in the use of this equipment. Ann Worrall,<br />
MSWA physiotherapist and Oliver Guttinger, MSWA exercise<br />
physiologist will manage and coordinate this program. The<br />
MSWA Physiotherapy Team will also participate by providing<br />
all the initial assessments, referrals and communication links<br />
with the relevant neurology teams.<br />
To date, 47 Members have been assessed on the Balance<br />
Master. Approximately an hour is required to complete four<br />
specific tests on the Balance Master. This includes time for<br />
setup and discussion of test findings. These findings can<br />
be used to direct training on the Balance Master over six to<br />
eight sessions or balance exercises as part of a complete<br />
physiotherapy program at home or in the gym. This is then<br />
followed up by a re-assessment on the Balance Master where<br />
the physiotherapist will note progress. The aim of improving<br />
balance training is to reduce the incidence of falls by targeting<br />
specific areas during balance training.<br />
If Members would like to be considered for a balance<br />
assessment using the Balance Master, please contact<br />
the Physiotherapy Department at Wilson on 9365 4834.<br />
A detailed physiotherapy assessment will be conducted<br />
where you will be assessed on your suitability for a<br />
balance assessment on the Balance Master.<br />
Shannon Kennedy,<br />
MSWA Physiotherapist.<br />
How do you talk to yourself? We all do it. Maybe not out loud<br />
but we do have an ongoing dialogue with ourselves on the<br />
inside; our inner critic. It is at times driven by should haves<br />
and could haves. What are your expectations for yourself?<br />
Are you unfairly comparing yourself against others or against<br />
markers set by the ongoing messages received from society’s<br />
definition of what is success and happiness? Our ability to<br />
shame and abuse ourselves can easily go unnoticed. I ask you<br />
to stop for a moment and ask yourself; would I say the things<br />
I say to myself to the people I care about?<br />
In recent years there has been a resurgence in the western<br />
world in embracing the practice of self-compassion. Linked<br />
strongly to mindfulness and featuring heavily in Buddhism,<br />
self-compassion as a practice is nothing new. Selfcompassion<br />
is not simply being kinder to yourself, it is a<br />
leap of faith. It is making the choice to drop your guard and<br />
allowing yourself to be vulnerable. It involves facing fears and<br />
creating a safe space within yourself to let go of blame and<br />
shame. It is an ongoing practice which involves connection to<br />
self and others, empathy, nurturing, non-judgment and sitting<br />
with difficult emotions rather than numbing or avoiding them.<br />
More and more research is being conducted around selfcompassion<br />
as a therapy to assist improving mood and combating<br />
our human inclinations to seek the negative and ruminate upon<br />
it. There are many different ways of accessing self-compassion.<br />
Here are some of the websites, podcasts, books and videos<br />
that can be a starting point for you to learn more:<br />
Greater Good, The Science of a Meaningful Life:<br />
greatergood.berkeley.edu/gg_live/science_meaningful_life_videos<br />
The University of California offers a wide range of videos<br />
and their own podcast looking at the psychology, sociology,<br />
and neuroscience of well-being and its links to a wider more<br />
compassionate society: greatergood.berkeley.edu/gg_live/<br />
gg_podcast/podcast/sonja_lyubomirsky_on_the_myths_<br />
of_happiness<br />
For a site that looks more closely at self-compassion, I enjoy<br />
Kirstin Neff. I find her Tedx video talking about self-esteem<br />
versus self-compassion very relatable and accessible:<br />
self-compassion.org<br />
I recently read Amanda Palmer’s book, The Art of Asking,<br />
which led me to Brené Brown’s, The Gifts of Imperfection.<br />
I found both of these books presented the ideas of selfcompassion<br />
in a real life context which was attainable<br />
and inspiring. See my reviews on the books further in this<br />
article. Amanda Palmer’s book originated from her TED talk:<br />
youtube.com/watch?v=xMj_P_6H69g<br />
If you are interested in exploring self-compassion from a<br />
traditional Buddhist perspective, Perth has many Buddhist<br />
centres that offer classes and training in meditative practice.<br />
They also have information on the origins of self-compassion.<br />
The Buddhist Society of Western Australia offers free<br />
introductory meditation classes. For more information, head<br />
to: dhammaloka.org.au/program.html<br />
As mentioned earlier, the concept of self-compassion is on a<br />
moving spectrum of pure science, academia, self-discovery<br />
and spiritual practice. My point being, there is no one way of<br />
doing this right. It is a process of exploration, of discovery and<br />
connection within you.<br />
If you would like more information, please do not hesitate<br />
to contact myself or my colleagues in the Counselling<br />
Department on 9365 4811.<br />
Book reviews<br />
The Art of Asking Author - Amanda Palmer<br />
Amanda Palmer is a singer, songwriter, activist, director<br />
and blogger. This is her first book and it is written with such<br />
frankness and honesty that it is difficult not to be instantly drawn<br />
into it. If you are familiar with Amanda then you will know she<br />
is not shy about shedding her clothes and in this book she has<br />
allowed herself to be completely vulnerable with the reader. It is a<br />
story about letting go of fear and creating a connection between<br />
yourself and the wider world. Initially it may seem Amanda’s life<br />
is far removed from most of us but it becomes clear very quickly<br />
that the essence of this story touches us all. In keeping with the<br />
ethos of the book, if you cannot afford a copy, you can register at<br />
the gifting site set up by Amanda for readers to share her book.<br />
The Gifts of Imperfection Author - Brené Brown<br />
Brené Brown is a research professor on shame, courage,<br />
worthiness and vulnerability. This book is compact and direct<br />
and looks at what it takes to live a wholehearted life. Brené<br />
understands the importance of creating a story to impart meaning<br />
and understanding and that makes the concepts presented in<br />
this book realistic and attainable. One of the ways she does this<br />
is by referencing her own life experiences in the book. The book<br />
not only provides guideposts for living a more compassionate life,<br />
it cleverly and importantly addresses what gets in the way of<br />
us having the courage to believe we are enough. For more of<br />
Brené’s writing, head to her site where she has a blog.<br />
Websites<br />
Amanda’s gifting site: massmosaic.com/groups/162/view/<br />
the-art-of-asking-amanda-palmer-book-gifting<br />
Brené Brown’s site: brenebrown.com<br />
14 <strong>Autumn</strong> <strong>2015</strong> The MS Society of Western Australia The MS Society of Western Australia <strong>Autumn</strong> <strong>2015</strong> 15
That’s life with Narelle<br />
Narelle Taylor<br />
An action plan<br />
to reach for the stars<br />
Dr Andrew Ong<br />
Here at Lincoln Park Aged Care Facility, the motto for<br />
the month is ‘stay on your feet’. It’s all very well for those<br />
residents who don’t have multiple sclerosis, but for me it is a<br />
case of ‘get on your feet’.<br />
The physiotherapist here is taking great pains to have me walk<br />
around the hallways. The physiotherapists at Wilson have me<br />
walking great distances. Apparently the aim is to make it<br />
to Fremantle. The pulpit walker used by physiotherapists is<br />
essential for this exercise but at least I get on my feet. I had<br />
forgotten just how good it felt to be upright.<br />
Years ago when I used a walker, my father thought I looked<br />
gravitationally challenged and encouraged me to avoid<br />
crashes to the ground by using a wheelchair. I progressed to<br />
a scooter and wheelchair full-time and must add that there<br />
have been many advantages.<br />
At my eldest daughter’s 40th birthday last year for example,<br />
some people had trouble walking after generous amounts of<br />
French champagne. Not me.<br />
Recently my father visited from Sydney and we went from<br />
one tourist spot to another with me in a wheelchair. He was<br />
confident that I was safer that way. To his horror though, and<br />
mine, my wheelchair drivers suffered lapses in concentration.<br />
I was twice catapulted from the chair - the first time onto a<br />
busy road with a toddler on my lap and the second time onto<br />
the cobblestone floor of a beer garden. It was unedifying both<br />
times; for me, the pushers of the chair and for my father.<br />
Luckily I can execute a perfect commando roll and I was<br />
relatively unscathed.<br />
Narelle (L) with her daughters.<br />
The baby however, could not be included in the commando<br />
roll for practical reasons and so I held her at arm’s length<br />
above my head as I slid into traffic. My strategy impressed<br />
my daughter, the mother of the baby. An excellent basketball<br />
player, she whipped around to the front of the chair very<br />
quickly and snatched the child as if she was accepting the<br />
ball being passed to her on court. She commended me on my<br />
good save and got on with the game.<br />
I think the shock of this spectacle took a bit longer for my<br />
father to absorb. He was only just getting over it a few days<br />
later when I was hurled over a step and out of my chair again.<br />
This time I stood upright and in what felt like slow motion, fell<br />
to earth in my now familiar commando roll.<br />
The crowd at the pub thought it was part of the floor show.<br />
The applause was deafening. I can fall without hurting myself.<br />
It is important we all know how to fall properly but, practising<br />
falling is not recommended. Speak to the physiotherapist!<br />
I see so many of my fellow residents using walking frames. It<br />
makes me think life would be speedier and more comfortable<br />
for them if they were in a wheelchair. But maybe they are<br />
persevering with walking just as I did. They are staying on<br />
their feet.<br />
To discover your natural talents and gifts, ask yourself one<br />
simple question. Exactly what do I want to do that will give me<br />
the satisfaction, stimulation and excitement to make me happy?<br />
I can begin by telling you that the source of happiness is an<br />
internal thing and that it is very individual. You can begin by<br />
understanding your own strengths and weaknesses, and<br />
working with them to change any belief patterns you think<br />
might be holding you back.<br />
You must live your life the way you would like it to be. Learn<br />
to create, not just react. Try making things happen, don’t<br />
just sit back and watch it happen or wonder what has<br />
happened! Remember, nothing can stop the power of a truly<br />
focused mind.<br />
There are no boundaries or horizon to the power of your mind<br />
and your ability to achieve what your heart truly desires. Just<br />
remember, we often strive for something we think will give<br />
us happiness only to find out when we get it that it brings us<br />
heartache and misery. So, be very careful about what you really<br />
go for and focus upon in life, for you will get it! And for those of<br />
you who are not happy, you know exactly what I mean.<br />
Challenges when travelling<br />
Essie Clinton<br />
I am writing to relate my experience of traveling overseas<br />
on holiday while being wheelchair dependent.<br />
My husband Jim and I booked a trip to Penang, Malaysia with<br />
a seniors group consisting of people over 70 years of age.<br />
Although physically fit, many found the distance they had to<br />
negotiate excessive and there was no apparent mobility help<br />
available. It was only after a lot of enquiries at the Kuala Lumpur<br />
airport that we found we could hire a wheelchair for $20.<br />
We realised that our mistake was in not getting the travel<br />
agent to make the necessary arrangements required seeing<br />
as most of the group would need assistance with getting<br />
around the airports. Having this pre-arranged would have<br />
eliminated this problem.<br />
For instance, we found that we had to get through a maze<br />
of tunnels in the Kuala Lumpur Airport before we reached<br />
the checkout. We were not even sure if we were going in<br />
the right direction.<br />
Therefore, to get what you really want, choose the best<br />
teachers, read the best books, and keep up a continuous<br />
programme of self-improvement through DVDs and life<br />
experience courses. Be proactive. Success belongs to people<br />
who never give up.<br />
The most enduring and successful people discover for<br />
themselves the opportunities, wisdom and strength that<br />
would not otherwise be obvious to them in less favourable<br />
circumstances. Never have truer words been spoken than<br />
when it was said, that if you take care of the small things in<br />
life, the big things will take care of themselves. The journey of<br />
a thousand miles always commences with a first step.<br />
So ask not what life should give to you, rather ask how you<br />
can be of service in this life. Remember, no honest attempt is<br />
ever lost. It is upon these millions of tiny trials and so-called<br />
failures that success is built. In this way you can turn the<br />
stumbling blocks you encounter into stepping stones.<br />
Happy is the person who knows what to remember of the<br />
past, what to enjoy in the present and what to plan for in<br />
the future.<br />
When we arrived back<br />
in Perth, I asked for a<br />
wheelchair but the person<br />
assisting me could only<br />
take me so far as they<br />
were short staffed. Jim<br />
had to push me to the<br />
baggage carousel, but my<br />
fold-up wheelchair wasn’t<br />
even on the carousel. It had<br />
been put to one side of it.<br />
We have spoken to friends who have travelled overseas<br />
and received all the mobility attention needed. Maybe if we<br />
had not been on a budget-priced tour we would not have<br />
had these problems. Our advice to you is to make sure that<br />
your travel agent follows up on all arrangements before<br />
you travel.<br />
16 <strong>Autumn</strong> <strong>2015</strong> The MS Society of Western Australia The MS Society of Western Australia <strong>Autumn</strong> <strong>2015</strong> 17
A day trip to Antarctica<br />
John Cooper and Julie Nelson White<br />
Party food<br />
Ros Harman<br />
An Australia Day flight to Antarctica fulfilled a long-time<br />
dream for John and was a spur of the moment decision for<br />
Julie. John was able to cross two things off his bucket list; he<br />
flew over Antarctica and did it in business class deluxe. This<br />
gave him extra room during the flight and the window seat<br />
was a bonus. You may have seen John talking about the flight<br />
on Channel 7’s Today Tonight in January. It was great seeing<br />
Antarctica from 10,000 feet up with the relatively cheap and<br />
safe option of flying. Julie’s aisle seat was in economy but she<br />
was luckily able to snag a window seat halfway through the<br />
Antarctica adventure.<br />
The 12 and a half hour journey on the Boeing 747 jumbo jet<br />
with 350 other passengers was cloudy until the pilot spoke<br />
to Michelle from Casey Station, Antarctica. She told us the<br />
weather was fine, although a rather cool -51°C. We changed<br />
course and experienced four hours of majestic cloud-free<br />
viewing of the ice and snow. We could feel the excitement in<br />
the cabin when we saw our first iceberg. The windows were<br />
mobbed and there was feverish clicking of cameras.<br />
Because we were so high, scale was difficult to understand<br />
but Julie remembers seeing a ship hard up against an ice<br />
cliff and it looked about half the size of a fly speck. John<br />
was a little disappointed that the clouds covered the ranges,<br />
including Mt Erebus, making the pilot decide to head back to<br />
Perth. We arrived home at 9.30pm. Overall, the scenery was<br />
fantastic and created unforgettable memories for us both.<br />
Everyone on the flight was there to have a good time, and<br />
it showed with the easy smiles and camaraderie that grew<br />
between passengers. There was an Australian official on<br />
board who was able to naturalise two new Aussies over<br />
Antarctica. All passengers sang the national anthem with<br />
enthusiasm and repeated an oath of affirmation to Australia.<br />
The flight crew were fabulous in assisting John when needed<br />
and even dressed up for Australia Day.<br />
It was a fantastic trip and well worth the money for an<br />
unforgettable bucket list experience.<br />
Protecting yourself from the flu<br />
Access to flu vaccinations will be delayed slightly this<br />
year, due to the changes that are being made to the<br />
vaccine. We have been told that the vaccine won’t be<br />
available until approximately mid-April. Please check<br />
with your GP.<br />
Each winter brings the risk of flu. Our Members often<br />
ask if they should have the vaccination or not.<br />
Our medical advisor Professor W Carroll says, “There<br />
is no evidence that these vaccinations make multiple<br />
sclerosis worse or cause a relapse. Should a relapse<br />
occur around the time of flu vaccination, it is thought to<br />
be a coincidental event.<br />
“Occasionally, people with MS who have vaccinations<br />
can experience a brief exacerbation of existing MS<br />
symptoms, but this is not worsening of the MS. People<br />
with MS are advised to discuss this with their treating<br />
neurologist or physician as soon as possible as it is<br />
essential to have the vaccination earlier rather than<br />
later to reduce the risk of contracting the flu.”<br />
Don’t forget that your GP and neurologist can advise<br />
you on these important health matters. And, seek<br />
advice from your neurologist if you are on disease<br />
modifying therapies and need vaccinations for travel.<br />
I was at a party recently and not knowing anyone, I joined a<br />
group of shy people who were hovering at the side of the room.<br />
Introductions were made, glasses handed around, and we all<br />
admired the view from the picture window. After an awkward<br />
silence, I tried to break the ice by making a comment about<br />
the latest political headline but this only led to a few muttered<br />
grumbles and a general feeling of despondency. I’d forgotten<br />
my mother’s advice – if you want to make friends, don’t talk<br />
about politics or religion.<br />
A waiter appeared with a tray of canapés and at that moment<br />
a woman could be heard asking, “Are these gluten free?” All<br />
of a sudden the atmosphere in the room changed and the<br />
party really got started as everyone launched into an animated<br />
discussion about food. It started with food intolerances,<br />
moved on to the advantages of ancient grains and lingered<br />
for a while on whether blueberries could stave off dementia.<br />
I learnt something new - apparently cauliflower is the new<br />
kale and we can expect to see a lot more of it this year in<br />
everything from purees to pizzas.<br />
It was only seven years ago that Masterchef seduced us into<br />
thinking we could all be maestros in the kitchen and Jamie<br />
continues to insist that we can whip up a gourmet feast in<br />
15 minutes. An endless string of celebrity chefs on television<br />
keeps us abreast of the latest culinary techniques while it<br />
only takes a few keystrokes on the computer to find a recipe<br />
for anything. Television and Google have made us all food<br />
experts; in theory at least, if not quite in practice.<br />
I have been interested in food for a long time. I grew up in<br />
a household where meat and three veg was the formula for<br />
most meals, albeit adorned with olive oil and lemon to please<br />
my Greek father. I was a teenager when I began to make<br />
the connection between diet and health as I simultaneously<br />
discovered mung beans and flared jeans. When my father<br />
was diagnosed with cancer, my mother, having read about<br />
the miraculous benefits of carrot juice, bought a large noisy<br />
juice extractor which took pride of place on the kitchen bench.<br />
I embraced health food with a vengeance causing my mother<br />
much angst as I filled the fridge with cottage cheese and<br />
alfalfa sprouts. Determined to save the world through food<br />
I went to university planning to become a dietician, but my<br />
stomach for the course disappeared in the third week when<br />
I realised just how much science I would have to digest. I<br />
abandoned dietetics for literature instead and I’ve been<br />
devouring books ever since.<br />
When I was diagnosed with multiple sclerosis at the age of<br />
26, the Pritikin Diet was all the rage and some people claimed<br />
it could help people with multiple sclerosis. It seemed to me<br />
that its main premise was that you shouldn’t eat anything that<br />
makes food taste better – no salt, no sugar, no fat, no alcohol,<br />
minimal meat, and only the whites of eggs. I stuck to it for<br />
nearly a year.<br />
The climax came one miserable night when out for dinner with<br />
friends, I sat bleakly picking at a lettuce leaf while watching<br />
all sorts of gourmet delights appear and disappear around<br />
me. I spent the evening hungry and unhappy, unwillingly at<br />
the centre of attention as I repeatedly tried to explain to my<br />
amazed dinner companions why I was not eating. I gave up<br />
the diet after that.<br />
I don’t know if the Pritikin Diet helped reduce my multiple<br />
sclerosis symptoms. I didn’t enjoy it, but despite its stringency<br />
it was good for me in a roundabout way - I learnt a lot about<br />
myself that year, about my relationship with food and how to<br />
be in control.<br />
Diets and food fads have come and gone. Back at the party<br />
my new friends and I knew them all, casually scattering our<br />
expertise through the conversation like Celtic sea salt. We<br />
deftly distributed our knowledge of cholesterol, carbohydrates<br />
and calories alongside minutely described anecdotes of our<br />
digestive health. Clearly people are more comfortable talking<br />
about food than politics and I soon knew more about their<br />
colons than their careers.<br />
As I sipped my champagne and nibbled on a nori roll, I<br />
reflected on how glad I was not to be worried about what I<br />
was eating. So long as food is fresh, tasty and generally good<br />
for you, I will eat it. I’m fortunate that I don’t have a weight<br />
problem and my appetite is in sync with what my body needs<br />
to stay healthy.<br />
These days I have gone back to my Greek roots and follow<br />
what I like to call the Aristotle diet. It was he who is credited<br />
with first saying, “Everything in moderation.” And, if I might<br />
add, washed down with a glass of wine, it’s the only way<br />
to go.<br />
18 <strong>Autumn</strong> <strong>2015</strong> The MS Society of Western Australia<br />
The MS Society of Western Australia <strong>Autumn</strong> <strong>2015</strong> 19
MS Mega Home<br />
Lottery<br />
Age not a factor<br />
The first MS Mega Home Lottery of <strong>2015</strong> officially<br />
launched on 18 February, and incredibly beat last year’s<br />
record, selling out in just 10 days!<br />
This year, the Grand Prize is the choice between the luxury<br />
$1.45 million, 2-storey home or $1.2 million in cash. The<br />
stunning Webb & Brown-Neaves home is located in Hillarys,<br />
just metres away from Perth’s best beaches. The coastal<br />
themed home boasts four double bedrooms, a home theatre,<br />
open-plan kitchen, living and dining area, study, upstairs<br />
sitting area, and swimming pool.<br />
An Early Bird Prize of $500,000 is also up for grabs along with<br />
4,002 prizes worth more than $3.3 million. The prize pool<br />
includes six luxury cars as well as trips to the US, England,<br />
Canada and Italy.<br />
MSWA CEO Marcus Stafford, said the money raised will go<br />
towards supporting thousands of people with MS across WA.<br />
He said: “It provides much needed support and services to<br />
people with MS and other neurological conditions, their family<br />
and carers.<br />
“MSWA is also the biggest funder of research into finding<br />
the cause and cure for MS in Australia. In the past year we<br />
committed a record $1.25 million towards research, with half<br />
a million dollars of that to be spent on WA-based research.”<br />
The Bonus Prize will be drawn on Wednesday, 1 April<br />
<strong>2015</strong>. All remaining prize draws, including the Grand<br />
Prize and Early Bird Prize, will take place on Wednesday,<br />
29 April <strong>2015</strong>. Keep a look out on mslottery.com.au<br />
or head to our Facebook page to find out if you are the<br />
lucky winner!<br />
Alexander Tanasijevic isn’t like most boys his age. At only 11<br />
years of age, he is the primary carer for his mother Branka<br />
Smiljanic who was diagnosed with multiple sclerosis three<br />
years ago.<br />
The inspirational young boy takes on a whole list of duties<br />
which include feeding the dog, taking out the garbage,<br />
cooking, cleaning, gardening, giving his mother her<br />
medication, paying her bills and washing her car. On top of all<br />
that, he also spends his free time researching the condition<br />
online to keep up to date with new treatments.<br />
It’s an amazing amount of dedication from Alexander who has<br />
been caring for his mother since he was eight.<br />
To show her appreciation for Alexander, Ms Smiljanic<br />
nominated him for the Young People Who Care Awards and<br />
on December 9, he did his mum proud by winning the honour<br />
in the 8-13 year old category.<br />
Ms Smiljanic said Alexander truly deserved to win the award.<br />
She said: “This is the best thing that has happened to me<br />
in my 30 years in Australia. I visualised him winning so it<br />
was absolutely awesome when he did but I was so proud, I<br />
couldn’t stop crying.”<br />
When asked about his choice to care for his mum, Alexander<br />
said, “It’s not bad at all - I really love my mum.”<br />
MSWA CEO, Marcus Stafford said it was fitting that Alexander’s<br />
efforts and the efforts of other carers were being recognised.<br />
“He really is a very special youngster. There would be very<br />
few 11 year olds who are not just capable of being the primary<br />
carer for their mum, but also happy to do it. His support and<br />
love for her is quite amazing,” said Mr Stafford.<br />
“Carers are often the unsung heroes in our society. They’re busy<br />
working away in the background, taking care of their family,<br />
friends or loved ones, but it’s important that we appreciate the<br />
invaluable contribution they make in the community.”<br />
World MS Day<br />
MSWA will hold its annual MS Street Appeal on World MS Day,<br />
Wednesday, 27 May, in the Perth CBD. The day will consist<br />
of volunteers, Members, families and friends participating<br />
in attention-grabbing activities to gain awareness and raise<br />
funds for MS.<br />
Some of the activities include: a double decker bus driving<br />
around the Perth CBD making loud noises to grab people’s<br />
attention, our red morph suit people roaming around the<br />
CBD with Stand Up to MS signs, and volunteers participating<br />
in the annual street appeal.<br />
‘Stand Up to MS’ merchandise will also be available for sale on<br />
the day, as well as an opportunity to donate money to MSWA.<br />
Since the Street Appeal’s inaugural year, more than $60,000<br />
has been raised for Western Australians living with MS.<br />
MSWA Members also have the chance to get on board the<br />
double decker bus and make some noise in the city. The bus<br />
will consist of two 3 hour shifts and unfortunately will not<br />
have wheelchair access.<br />
If you would like to register for a spot on the bus or to<br />
get involved in the MS Street appeal, please contact the<br />
Events Team on 6454 3131.<br />
Les Misérables<br />
Jenny Sim<br />
In January, I was very lucky to be given two tickets to attend<br />
the Les Misérables performance at the Crown Theatre.<br />
One ticket was for myself and the other was for my support<br />
worker Bec, who looked after me and made for a great<br />
companion.<br />
We had special parking which meant we were able to park<br />
close to the entrance. Once inside, despite me being in a<br />
wheelchair, we were given great seats close to the stage.<br />
This seating arrangement was excellent as there was a chair<br />
for your companion, as well as space for your wheelchair.<br />
The large area in front of us also made manoeuvring easy.<br />
I had often wondered how you would be seated when in a<br />
wheelchair – question answered!<br />
The show itself was brilliant, with excellent scenery which<br />
changed constantly. The acting and singing were fantastic.<br />
I must thank Channel 9 for donating 100 tickets to MSWA<br />
and making this night possible.<br />
20 <strong>Autumn</strong> <strong>2015</strong> The MS Society of Western Australia The MS Society of Western Australia <strong>Autumn</strong> <strong>2015</strong> 21
Volunteering news<br />
Dawn Burke<br />
Wilson Outreach News<br />
Nicola Ryan<br />
Hello again and welcome to the New Year. I trust you all<br />
had a lovely and enjoyable break. Did you know that <strong>2015</strong><br />
is the Chinese New Year of the goat/sheep? Our Members<br />
and volunteers at Wilson Outreach celebrated Chinese<br />
New Year on 19 February and were kept busy with various<br />
themed activities.<br />
We celebrated International Volunteers Day on December 5,<br />
2014. I was lucky enough to be able to invite nine volunteers<br />
to attend the annual Volunteering WA Garden Party at<br />
Government House. We all enjoyed an afternoon tea of hors<br />
d’oeuvres, drinks and beautiful music. Our table was also<br />
very honoured to personally meet the first female Governor<br />
of WA, Kerry Sanderson AO. It was a great opportunity for our<br />
volunteers to get to know each other and share their varying<br />
roles at MSWA. A lovely afternoon was had by all.<br />
The annual Members, volunteer and staff Christmas party<br />
was a huge success and was enjoyed by everyone. I tried<br />
to keep to the theme of blue and silver with my Christmas<br />
party outfit. I didn’t plan on looking like an elf, but apparently<br />
I did! I’m sure everyone loved being entertained by a blue and<br />
silver, bubble blowing, ribbon waving, dancing elf.<br />
The new venue was fantastic and I believe it has already been<br />
rebooked for Christmas this year. Christmas events such as<br />
this can’t be run successfully without everyone pitching in<br />
together. I’d like to thank the staff for the amazing job done,<br />
especially Pam LeClus and Nicola Ryan. We couldn’t have run<br />
the Christmas Party as successfully as we did without the<br />
dedicated QBE corporate volunteers, who once again helped<br />
set up on the day and served meals. QBE has been a great<br />
supporter of MSWA over the years and we look forward to our<br />
ongoing partnership with them.<br />
I would like to take this opportunity to welcome our new<br />
volunteers to the Society for <strong>2015</strong>. We have a great team of<br />
people here at MSWA and I’m sure you will enjoy your time<br />
with us. As always, it is great to see our long term volunteers<br />
back on board and I look forward to a fun, positive and<br />
productive year.<br />
If anyone is interested in volunteering or knows of someone<br />
who would like to volunteer, please give me a call on<br />
9365 4897. I will be able to share what opportunities may<br />
be currently available.<br />
Easter will be upon us before you know it. With this in mind,<br />
I wish you all a Happy Easter and may you not overload on<br />
chocolate. Until next time, please take care and bye for now.<br />
Our lovely Christmas party was a huge success, with plenty<br />
of positive feedback about the new venue and a fantastic<br />
performance by the 90 children school choir which included<br />
a full band!<br />
We all enjoyed our lovely break, with staff and Members now<br />
back feeling refreshed and energised for a new year!<br />
We have exciting things planned at Wilson with our lucky<br />
Members going on a virtual tour around the world! We will<br />
experience other cultures and cuisines and learn more about<br />
their history. And of course, there will be fun arts and crafts,<br />
and games along the way, all from the comfort of our air<br />
conditioned lounge!<br />
Our first ‘stop’ is China and, with our passports stamped, we<br />
get on-board the “MS Airways”! Our names will be painted<br />
in traditional Chinese writing, we will explore the meaning<br />
of our animal signs, learn about the most famous Chinese<br />
inventions and educate ourselves on The Great Wall of China<br />
and Terracotta Warriors.<br />
The walls of our centre will be decorated with our arts and<br />
crafts to really create the feeling of travelling to another<br />
country. We will also indulge in fine dining and fortune cookies<br />
to ensure we are well fed!<br />
Once we ‘fly’ home, we will settle back into Wilson before<br />
preparing to travel again in a couple of months to…India!<br />
Look out as we get into the spirit of Bollywood, celebrate the<br />
festival of colours and appreciate our favourite aromatic foods!<br />
The third ‘stop’ will be Alaska! While there, we will admire<br />
stunning mountain ranges and have some fun with ice and<br />
snow. We will also do as the locals do and spend some time<br />
fishing (watch out for bears!), and building a life-sized igloo!<br />
Lastly, we will connect with our inner tribal warrior and travel<br />
to the Serengeti in Africa where we will be entertained by<br />
traditional African Drummers! With such wonderful themes,<br />
we are sure our Members will enjoy another great year at our<br />
Wilson centre!<br />
This year also marks a special centenary for Anzac Day. It<br />
will be 100 years since our brave soldiers embarked on that<br />
fateful and historic journey. We are planning to hold a special<br />
ceremony to commemorate this event at our Wilson Centre<br />
and are hoping for a good turnout to honour our veterans,<br />
past and present.<br />
Southside<br />
Outreach News<br />
Colin Whitton<br />
MSWA lost a dedicated and great supporter when Colin Whitton passed away in<br />
September last year after a workplace accident. Along with his wife Lynda, Mr Whitton,<br />
66, had been involved with MSWA for the past 18 years. Lynda has been the president<br />
of the Bunbury Outreach Group Committee for the past 10 years and has MS.<br />
Mr Whitton had been an employee of BHP Billiton for the past 24 years at the time of<br />
his accident. As a tribute to Mr Whitton and to thank him for his years of service, BHP<br />
Billiton donated $80,000 to the MS Society in his honour. We’d like to thank BHP Billiton<br />
and the Whittons for their continued support of MSWA.<br />
Colin Whitton (L)<br />
with his wife Lynda.<br />
Our new home in Rockingham is running very smoothly.<br />
Everyone is very happy with all the extra room – no more<br />
having to play dodgems while wheelchairs juggle for space!<br />
Having air-conditioning throughout the building is also a<br />
godsend during this very hot weather!<br />
Our staff and volunteers really put on a show with their<br />
“Dancing with the staff” performance during our Christmas<br />
lunch! A very funny and clever parody of the popular TV show.<br />
As ever, Nicola and the team did a wonderful job of arranging<br />
the caterers, entertainment, gifts and much more. We also<br />
have Ann and Annette to thank for the table decorations.<br />
Having a designated area for craft is wonderful. Ann and<br />
Annette have had ‘fun’ sorting out boxes of supplies and<br />
equipment. We plan to make cards and other craft items to<br />
put on sale as a way to fundraise throughout the year.<br />
Bryan and Sally are off on a cruise in March. Cruising seems<br />
popular with people with multiple sclerosis. Member Marija<br />
wrote about her cruise experience in the last two editions of<br />
the <strong>Bulletin</strong>! She found cruising easy for anyone with limited<br />
mobility. We look forward to your story, Bryan and Sally.<br />
22 <strong>Autumn</strong> <strong>2015</strong> The MS Society of Western Australia The MS Society of Western Australia <strong>Autumn</strong> <strong>2015</strong> 23
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