MSWA Bulletin Spring 16
BULLETIN THE OFFICIAL MAGAZINE OF MSWA mswa.org.au SPRING 2016 OVERVIEW ON TYPE 2 DIABETES EMPLOYMENT INFORMATION FORUMS SELF-COMPASSION: OUR GREATEST ALLY LIFE SKILLS: WHAT DOES IT REALLY COST?
- Page 2 and 3: MSWA’S MAGAZINE FOR PEOPLE LIVING
- Page 4 and 5: From the desk of the CEO MARCUS STA
- Page 6 and 7: ROUND-UP OF RESEARCH AND OTHER ITEM
- Page 8 and 9: EVERYTHING YOU WANTED TO KNOW ABOUT
- Page 10 and 11: OVERVIEW ON TYPE 2 DIABETES Type 2
- Page 12 and 13: FIVE TIPS FOR GETTING A MENTAL HEAL
- Page 14 and 15: EMPLOYMENT INFORMATION FORUMS LISA
- Page 16 and 17: NEWS FROM SOCIAL WELFARE IRENE GALL
- Page 18 and 19: SELF-COMPASSION: OUR GREATEST ALLY
- Page 20 and 21: THAT’S LIFE WITH NARELLE NARELLE
- Page 22 and 23: LIFE SKILLS: WHAT DOES IT REALLY CO
- Page 24 and 25: MSWA AWARDS PHARMACY 777 FOR THEIR
- Page 26 and 27: VOLUNTEERING UPDATE DAWN BURKE, VOL
- Page 28 and 29: iPAD DONATION WELL-RECEIVED BY FION
- Page 30 and 31: WILSON OUTREACH NEWS NICOLA RYAN, R
- Page 32: We’re fundraising with Discover t
BULLETIN<br />
THE OFFICIAL MAGAZINE OF <strong>MSWA</strong> mswa.org.au<br />
SPRING 20<strong>16</strong><br />
OVERVIEW ON TYPE 2 DIABETES<br />
EMPLOYMENT INFORMATION FORUMS<br />
SELF-COMPASSION: OUR GREATEST ALLY<br />
LIFE SKILLS: WHAT DOES IT REALLY COST?
<strong>MSWA</strong>’S MAGAZINE FOR PEOPLE LIVING WITH MS<br />
NURSING Our MS nurses are usually the first point of contact after the neurologist’s<br />
diagnosis of MS. We’re committed to providing holistic supports; providing a greater<br />
understanding of what to expect.<br />
Lou Hatter, Manager: 9365 4809 or Community Nurse: 9365 4888<br />
WILSON CENTRE<br />
29 Parkhill Way (08) 9365 4888<br />
Fax (08) 9451 4453<br />
Freecall 1800 287 367<br />
See Health Team Dept contacts on this page<br />
PHYSIOTHERAPY Our team aims to provide treatment interventions to develop and<br />
maintain mobility and function. Our physiotherapists are experts in movement and function,<br />
and work in partnership with you to attain the highest possible level of independence.<br />
Dave Hathron, Manager: 9365 4837 or Physiotherapy Department: 9365 4834<br />
MEMBER SERVICES<br />
DIRECTORY<br />
GENERAL MANAGER – MEMBER SERVICES<br />
Sue Shapland: 9365 4840<br />
INDIVIDUAL OPTIONS<br />
Manager Community Care Programs,<br />
Gail Palmer: 9365 4851<br />
NDIS TEAM 1800 287 367<br />
OUTREACH GROUPS<br />
Wilson Outreach (Mon-Thurs): 9365 4830<br />
Beechboro Lodge (Mon, Fri): 9377 7800<br />
Southside Outreach (Fri): 9592 9202<br />
Bunbury Outreach (Wed): 9791 2472<br />
Albany Outreach (Fri): 9841 6657<br />
BUNBURY OFFICE<br />
9 Ramsay Street 9791 2472<br />
BUSSELTON OFFICE<br />
1/21 Cammilleri Street 9754 2320<br />
MARGARET DOODY RESPITE HOUSE<br />
Manager, Chris Rush: 9385 9574<br />
FERN RIVER ACCOMMODATION<br />
Manager, Liz Stewart: 9356 2747<br />
HAMILTON HILL ACCOMMODATION<br />
Manager, Jayne O’Sullivan: 9331 5780<br />
TREENDALE GARDENS RESPITE &<br />
ACCOMMODATION<br />
Manager, Linda Kidd: 9725 9209<br />
CONTACT US<br />
If you would like to comment<br />
on anything you read in this<br />
<strong>Bulletin</strong> please email<br />
bulletin@mswa.org.au<br />
or write to<br />
<strong>MSWA</strong>, Locked Bag 2,<br />
Bentley DC WA 6983<br />
The <strong>Bulletin</strong> can also be viewed at<br />
mswa.org.au/bulletin<br />
EDITORIAL COMMITTEE<br />
Greg Brotherson (Editor), Marcus Stafford (CEO),<br />
David Bugden, Sue Shapland, Ros Harman,<br />
Libby Cassidy, Sandra Wallace, Narelle Taylor,<br />
Leonie Wellington, Bhavna Jagtiani, and Dawn Burke.<br />
The Editor welcomes unsolicited submissions.<br />
All articles are subject to a reviewing process.<br />
The views expressed are those of the Authors<br />
and do not necessarily reflect the view of the<br />
Society’s staff, advisors, Directors or officers.<br />
OCCUPATIONAL THERAPY Occupational Therapists enable Members, and clients,<br />
to continue their work and other interests for as long as possible through advice, aids<br />
and equipment.<br />
Sandra Wallace, Manager: 9365 4804 or OT Department: 9365 4888<br />
SPEECH PATHOLOGY Our Speech Pathologists provide a targeted service addressing<br />
swallowing difficulties of our Members and clients. Education is given to understand the<br />
associated risks, and strategies for safe swallowing are recommended. Information may be<br />
given for language and articulation difficulties.<br />
Jamaica Grantis, Speech Pathologist: 6454 3140<br />
COUNSELLING Talking with a Counsellor creates a safe, respectful and confidential<br />
environment for you and those close to you to explore options, create change or<br />
gain understanding about your life. Attending counselling with our tertiary qualified<br />
practitioners enables opportunity for personal growth and exploration in a nonjudgemental<br />
environment. To make an appointment please call:<br />
Lisa Papas, Manager: 9365 4836 or Main Counselling line: 9365 4811<br />
SOCIAL WELFARE Social Welfare Officers assist people living with MS and their<br />
families to access services and supports to remain living independently at home. They<br />
specialise in case management, advocacy and sourcing funding options. They provide<br />
information on benefits and entitlements through Centrelink and other government<br />
departments.<br />
Irene Gallagher, Senior Social Welfare Officer: 9365 4835<br />
INDIVIDUAL OPTIONS We provide long-term and time limited in-home supports<br />
including assistance with personal care for people with MS, to help them remain in their<br />
homes. Care and supports are provided through a combination of funding from the Disability<br />
Services Commission (DSC) and our own fundraising efforts. We manage both DSC and<br />
NDIS individually funded care packages.<br />
Contact us on 9365 4851 for more information.<br />
THE NDIS TEAM We provide a convenient and fast one stop shop to enable you to<br />
easily transition to the NDIS as it becomes available in your area. We help you determine<br />
whether you are eligible for assistance under the NDIS; we guide you through the application<br />
process and then we help you develop a comprehensive NDIS plan to maximize your<br />
entitlements.<br />
We support people with all neurological conditions.<br />
Mark Douglas, NDIS Operations Manager: 9365 4824<br />
CAMPS & RECREATION <strong>MSWA</strong> provides separate recreation camps for Members,<br />
carers, and families, primarily funded by Lotterywest, and for a nominal cost to participants.<br />
These camps provide a break from daily routines, and strengthen friendships and support<br />
networks.<br />
Coordinator for Camps & Recreation: 9365 4843<br />
2 | <strong>MSWA</strong> BULLETIN SPRING 20<strong>16</strong>
Letter from the Editor<br />
DR GREG BROTHERSON<br />
According to Professor Bruce Taylor of the Menzies Institute<br />
for Medical Research, disease-modifying therapies with<br />
proven effectiveness that reduce relapse have been available<br />
for people with multiple sclerosis in Australia since 1996.<br />
What is not known is whether those people on treatment will<br />
acquire less disability over the course of their disease than<br />
those who are untreated.<br />
What is known, however, is that worldwide near enough<br />
to half the 2.3 million people with multiple sclerosis have<br />
a progressive type of the disease. That is, if they were not<br />
diagnosed with primary progressive multiple sclerosis in the<br />
first place their relapsing-remitting multiple sclerosis has<br />
moved on to secondary progressive multiple sclerosis. There<br />
is no treatment for progressive types of MS which is why the<br />
International Progressive MS Alliance is so important.<br />
Research money raised by the Alliance is being channelled<br />
directly to the problem, Dr Giancarlo Comi from the Department<br />
of Neurology Scientific Institute in Milan tells us to gather<br />
together scientific experts to speed up new treatments to end<br />
progressive MS. You can read more about progressive MS in<br />
Sue’s research roundup article on page 7.<br />
In the previous issue of the <strong>Bulletin</strong> you may recall I asked for<br />
contributions from people with multiple sclerosis to tell your<br />
story on how you are ‘stronger than MS.’ Well the answers<br />
came, and in a most remarkable manner.<br />
The news from the Outreach Groups, with pictures, are<br />
absolutely fabulous. People are joining in, contributing and<br />
enjoying the organisation set up by their nimble-minded<br />
coordinators, and as people with multiple sclerosis, and as<br />
Inside | <strong>Spring</strong> 20<strong>16</strong><br />
Letter from the Editor 3<br />
From the desk of the CEO 4<br />
A message from the General Manager – Member Services 5<br />
<strong>MSWA</strong> History Project 5<br />
Round-up of research and other items of interest 6-7<br />
Everything you wanted to know about<br />
the NDIS but were too afraid to ask 8-9<br />
Overview on type 2 diabetes 10-11<br />
Five tips for getting a mental health boost for people with MS 12<br />
Dr Google – To believe or not to believe? 13<br />
Employment Information Forums 14<br />
Purchasing equipment? We recommend you speak to an OT first! 15<br />
News from social welfare <strong>16</strong><br />
New Perth Bus Port Information Links <strong>16</strong><br />
muMS Group - A shared space to talk about motherhood and MS 17<br />
Newly Diagnosed Seminar 17<br />
a group of like-minded people, they convincingly prove that<br />
they are stronger than the disease. Their actions speak louder<br />
than words ever can.<br />
So is Dawn Burke’s news about the volunteers. People enjoy<br />
working as volunteers at <strong>MSWA</strong> because the people they<br />
are helping are doing their best to be stronger than MS. And<br />
<strong>MSWA</strong> is all that much better for it, once again proving to be<br />
stronger than the illness, a nasty piece of work at the best of<br />
times.<br />
In this issue of your <strong>Bulletin</strong>, you will also find a two-page<br />
spread by Nigel Carey, Manager NDIS Business Development,<br />
on page 8 which contains everything you want to know about<br />
the NDIS. There is also an added bonus of a magnificent<br />
hamper, if after having read the article, you are the first<br />
person to email Nigel with the correct answers to the three<br />
questions.<br />
There is an excellent article about self-compassion being<br />
your greatest ally when dealing with MS by <strong>MSWA</strong> Counsellor<br />
Simon Rolph. Dr Ong joins the conversation and talks about<br />
how important life skills are when dealing with calamitous<br />
situations.<br />
Of course there are our regular contributions from Ros Harman<br />
and Narelle Taylor, neither of whom are ever stopped short<br />
from living life to the fullest. Ros somehow always sees inside<br />
or through a situation to the meaningful side of what life has<br />
to offer. Narelle tells us what she and her family were doing<br />
when she was diagnosed, and she hasn’t taken her foot off<br />
the accelerator ever since. Coming from different directions,<br />
both ladies are inspirational.<br />
Self-Compassion: Our greatest ally 18-19<br />
That’s life with Narelle 20<br />
Anywhere with Colin 21<br />
Life skills: What does it really cost? 22-23<br />
<strong>MSWA</strong> awards Pharmacy 777 for their ongoing commitment 24<br />
Fundraising Round Up 25<br />
> Mega Home Lottery > Everywoman Expo > Dinner Auction <br />
Volunteering Update 26-27<br />
iPad donation well-received by<br />
Fiona Stanley Hospital Medical Day Procedure Unit 28<br />
Margaret Doody Respite House news 28<br />
South West regional round up 29<br />
Wilson Outreach news 30<br />
Albany Outreach news 31<br />
Beechboro Outreach news 31<br />
Southside Outreach news 31<br />
<strong>MSWA</strong> BULLETIN SPRING 20<strong>16</strong> | 3
From the desk of the CEO<br />
MARCUS STAFFORD<br />
Times of change require strategic vision, steered by the<br />
steady hand of confident leadership.<br />
The disability world is currently going through significant<br />
change via the National Disability Insurance Scheme (NDIS). The<br />
Scheme represents Australia’s most significant change within<br />
the disability sector, and will mean that people living with a<br />
disability will have the choice and control over how they receive<br />
their services and support. But with any change of this scale,<br />
there are teething problems, delays and sometimes confusion.<br />
I hope, through our continued communication, you feel informed<br />
about the impact of the NDIS and what it means for you.<br />
The Scheme has been in a trial phase in WA since 2014 in<br />
three key areas and in the next couple of years, the whole of<br />
WA will be covered. The next step started this month, with<br />
trials expanding to cover Armadale, Murray and Serpentine-<br />
Jarrahdale and Bayswater, Bassendean, Chittering, Toodyay,<br />
York and Northam.<br />
Prior to the roll-out in your area, we will be in touch to help<br />
you with every step of the process.<br />
The reality, however, is that the NDIS won’t deliver as much as<br />
we’d like for everyone, most notably for the newly diagnosed<br />
and low support Members; and for our Members aged over<br />
65, it won’t deliver at all.<br />
That’s where our service provision to people with other<br />
neurological conditions comes in. While it’s nothing new and<br />
a service we’ve been delivering for years, it takes on an even<br />
greater importance in the current climate.<br />
Basically the NDIS ‘dollars’ that flow from people with other<br />
neurological conditions, and their NDIS funding, will finance<br />
our ability to serve people with MS who aren’t eligible for<br />
inclusion in the Scheme.<br />
This will allow <strong>MSWA</strong> to more formally extend our service<br />
provision to the people we are here to serve, and continue our<br />
growth plans and ambitions.<br />
I believe now is the perfect time to embrace a new-look logo<br />
that builds on <strong>MSWA</strong>’s history and reputation, but presents a<br />
more contemporary and accurate look and feel. Put simply,<br />
we need to tell the story of who we are now and what we do.<br />
So, I am delighted to present this first <strong>Bulletin</strong> to you with our<br />
new logo and branding, which you would have seen from our<br />
cover page, but here it is:<br />
So change definitely awaits us, and we are ready and excited<br />
by the opportunities that this change brings. The strong<br />
foundations that we have built over the last decade position<br />
us perfectly to continue to provide more and more services to<br />
people with MS, and to cement our leadership position as the<br />
highest funder of research in Australia.<br />
We recently consolidated this position, with a record breaking<br />
contribution of $2.2 million towards MS research. That<br />
includes a second year of funding for the five WA based<br />
research projects that received fellowships from <strong>MSWA</strong><br />
in 2015. This important work ranges from bio-medical to<br />
applied research and leaves me with an optimism I have not<br />
felt before.<br />
We also continue to grow and develop our Member Services<br />
Team, delivering physiotherapy, nursing, occupational therapy<br />
and care support work – and all points in between, for people<br />
with MS and all neurological conditions. Services have been<br />
going up 12% year on year, with the highest quality rating.<br />
I am also really pleased with our progress for new developments<br />
across WA which are all in various stages of progression:<br />
• our Bunbury Community and Health Services Centre will be<br />
completed before Christmas;<br />
• our northern suburbs accommodation and services facility<br />
in Butler is currently in the hands of the planners and is next<br />
in the pipeline; and<br />
• once the various building requirements have been<br />
met, we will commence the build on our Shenton Park<br />
accommodation facility.<br />
Where some see the problems, we only see the opportunities.<br />
We say that now, but it hasn’t always been that way. A<br />
decade or so ago we were well intentioned, with lofty goals,<br />
but little substance. Today we are acknowledged as a leading<br />
organisation with the finest team of over 600 staff. That<br />
allows us to relish the opportunities that the new world of the<br />
NDIS marketplace presents.<br />
It allows us to continue the strong growth of Member services<br />
and to continue to lead research funding in Australia.<br />
Importantly it also allows us to say, with confidence, that<br />
we will support you on every step of your unique journey.<br />
Whether it’s about grappling with the difficulties of new<br />
diagnosis, struggling with the planning process of the<br />
NDIS, or something else…we will be there for you.<br />
4 | <strong>MSWA</strong> BULLETIN SPRING 20<strong>16</strong>
A message from the General Manager –<br />
Member Services<br />
SUE SHAPLAND RN, BN<br />
“We should always have three friends in our lives - one who walks ahead who we look up to<br />
and follow; one who walks beside us, who is with us every step of our journey; and then,<br />
one who we reach back for and bring along after we’ve cleared the way.” Michelle Obama<br />
There is so much going on at the moment both here and<br />
overseas it’s hard not to get caught up in the hype and feel<br />
that at times we live in a slightly crazy world; but also a pretty<br />
lucky country.<br />
I know you should never talk politics, but the possibility of<br />
Donald Trump being the next President of the USA is a bit of<br />
a challenge for me! The ongoing random acts of terror make<br />
us both concerned but also grateful that for the most part we<br />
live in a country buffered from much of this unpleasantness.<br />
Watching the news isn’t always enjoyable although the<br />
Olympics provided some much needed respite.<br />
I think we can often focus on the negatives and then fail to<br />
appreciate what we can be grateful for both now and into the<br />
future. We are really lucky we have subsidised access to all<br />
of the MS therapies; many countries including the UK don’t.<br />
This provides greater choice and the opportunity to switch<br />
therapies if things aren’t going as planned.<br />
Our health system has its faults and issues but overall it’s<br />
pretty good and the standard is high and access relatively<br />
easy. Although if you have been ramped in an ambulance<br />
waiting to get into a busy ED that may be harder to reconcile!<br />
The NDIS is another reason to be glad we are living in Australia.<br />
When this scheme reaches full roll out, over 400,000 people<br />
with a disability will be participating and receiving funding to<br />
access the supports they need. Whilst access is currently limited<br />
to designated trial sites, the planning for full roll out is underway;<br />
see our double page NDIS spread in this issue on page 8. We<br />
hear many positive stories, from Members and others, who<br />
are now in receipt of individual funding for the first time. This<br />
continually validates the decision for this massive policy change.<br />
<strong>MSWA</strong> has had another fantastically successful financial<br />
year! The amazing job done by our Fundraising and Events<br />
Teams is envied by most. As a profit for purpose organisation,<br />
this provides additional income for us to support research and<br />
to grow supports and services for our Members.<br />
We delivered a 12% increase in Member Services hours<br />
compared to last year and our staff has grown steadily to<br />
accommodate the increased demand of NDIS and WA<br />
NDIS funded plans. We have, and will continue to grow our<br />
programs and supports. Just recently, we added yoga in<br />
Bunbury and massage in Margaret River and Northam to our<br />
suite of programs.<br />
Construction of our Bunbury Services Hub is steaming ahead<br />
and we look forward to completion towards the end of the<br />
year; the regional staff and Bunbury Outreach Groups can’t<br />
wait! This is really very exciting and <strong>MSWA</strong> has funded the<br />
land purchase and build through our own funds.<br />
We recently farewelled Marilyn Sylvester, long term Manager<br />
of Physiotherapy. Marilyn had been here at <strong>MSWA</strong> for 23<br />
years and saw much change and great improvements in what<br />
we could offer, and staffing levels, during her term. We wish<br />
her well in her retirement and thank her for all her hard work<br />
and dedication.<br />
The weather has been pretty cold and the flu season has<br />
been upon us. I hope you have managed to keep warm and<br />
stay well and I know we are all looking forward to having an<br />
enjoyable spring!<br />
Please remember our Member Services team is here<br />
to provide you with information, advice and support;<br />
please don’t hesitate to give us a call on 08 9365 4888.<br />
<strong>MSWA</strong> HISTORY PROJECT<br />
The History Project has been brewing for some time (since<br />
1987, actually, when <strong>MSWA</strong> moved from Clontarf to our new<br />
Centre here at Wilson), but now we are getting really serious<br />
about it all. We have assembled a small team of writers and<br />
set the rather ambitious target of completing the project by the<br />
end of next year.<br />
Now we are asking for your assistance. If you have any<br />
photos you think might be useful, you can mail them to<br />
us at <strong>MSWA</strong> Locked Bag 2 Bentley DC WA 6983. Should<br />
you like to write to us about your recollections our e-mail<br />
address is: bulletin@mswa.org.au<br />
<strong>MSWA</strong> BULLETIN SPRING 20<strong>16</strong> | 5
ROUND-UP OF RESEARCH<br />
AND OTHER ITEMS OF INTEREST<br />
SUE SHAPLAND RN, BN<br />
Here we bring you some interesting research updates from<br />
various sites around the world.<br />
Does the month you were born affect your risk of<br />
developing MS?<br />
A large study which included a very detailed survey was<br />
undertaken to determine whether there is a pattern to birth<br />
month for people with multiple sclerosis.<br />
Data from more than 21,000 people with MS in the UK was<br />
included and the study found that people diagnosed with MS<br />
are more likely than average to have been born in April, and<br />
less likely than average to have been born in November.<br />
The results of the study suggest that environmental factors very<br />
early in life contribute to the risk of MS. One of these factors<br />
could be low sunlight exposure during winter pregnancies,<br />
leading to low maternal vitamin D levels which in some way<br />
increase the risk of developing MS later in life. Other factors<br />
such as the mother’s exposure to seasonal infections or<br />
seasonal differences in diet could also play a part.<br />
Comment by authors: Birth month is only one of a number<br />
of environmental factors that could influence the risk of<br />
developing MS. Others include smoking and exposure to<br />
infections, especially Epstein-Barr virus which causes<br />
glandular fever.<br />
Rodríguez Cruz PM, Matthews L, Boggild M, et al.<br />
Are headaches more common<br />
during a relapse?<br />
Headaches are more common in<br />
people with MS and this study<br />
investigated if headaches were<br />
more likely to occur during a<br />
relapse than remission.<br />
The study in Iran compared the reports from<br />
57 people with relapsing-remitting multiple sclerosis and 57<br />
people without a neurological condition (controls).<br />
People with MS were questioned during a relapse and again<br />
three months later. It was found that headaches were more<br />
common during a relapse, particularly migraines. However,<br />
headaches were also more common in people with MS during<br />
remission, when compared to the general population.<br />
Nearly 50% of people with MS having a relapse also<br />
experienced a headache, compared with 38.6% in remission<br />
and 27.7% in the control group. The most common type of<br />
headache to experience during a relapse was a migraine,<br />
followed by tension headache.<br />
Headaches during a relapse were reported to be severe and<br />
described as compressing. People who had been diagnosed<br />
with MS in the last three years were more likely to experience a<br />
headache during relapse than those who had been diagnosed<br />
for longer.<br />
Togha M, Abbasi Khoshsirat N, Moghadasi AN, et al.<br />
Could Pilates have cognitive<br />
benefits as well as physical?<br />
In the past, people with MS<br />
were advised to avoid exercise,<br />
especially activities that might<br />
be tiring. However, a number of<br />
studies have shown that regular,<br />
moderate exercise is a good thing.<br />
Pilates is one of many options<br />
available to stay active.<br />
This study included 20 people with MS, split into two groups.<br />
The first adhered to clinical Pilates and the second a traditional<br />
exercise program for eight weeks.<br />
The study found that both clinical programs improved<br />
performance on some physical tests. Those in the Pilates<br />
group had significant improvements in balance, fatigue<br />
and tiredness and they had greater improvements in their<br />
cognitive symptoms and quality of life when compared to the<br />
traditional exercise group participants.<br />
Küçük F, Kara B, Poyraz EÇ, Idiman. J Phys Ther Sci. 20<strong>16</strong><br />
Mar;28(3):761-8. Epub 20<strong>16</strong> Mar 31.<br />
Some forms of MS may be hereditary<br />
After many years of saying that MS is not passed down the<br />
generations, new research is now saying the opposite.<br />
Researchers from Canada, led by Prof. Carles Vilariño-Güell,<br />
report they have proven that MS can result from a single genetic<br />
mutation on a gene called NR1H3. This, they say, produces a<br />
protein that acts as an ‘on-off switch’ for other genes.<br />
6 | <strong>MSWA</strong> BULLETIN SPRING 20<strong>16</strong>
Just one in 1,000 people with MS have this specific mutation<br />
according to the researchers. However, the finding uncovers the<br />
biological pathway that leads to the rapidly progressive form of<br />
MS, which accounts for 15% of people with the disease.<br />
The researchers used blood samples from 4,400 people with<br />
MS and 8,600 blood relatives as part of a 20-year project<br />
funded by the MS Society of Canada and the Multiple Sclerosis<br />
Scientific Research Foundation.<br />
They found the mutation in two Canadian families in which<br />
several members lived with a rapidly progressive type of the<br />
disease. In these families, two-thirds of the people with the<br />
genetic mutation developed MS.<br />
Childhood obesity linked to higher risk of MS<br />
A collaboration between researchers from Canada and the<br />
UK has found a causal relationship between obesity and the<br />
risk of developing multiple sclerosis. Several observational<br />
studies suggest that obesity (measured by Body Mass Index<br />
or BMI) in a person’s earlier stages of life is associated with an<br />
increased risk of developing MS. The research also suggested<br />
a relationship between the decrease in vitamin D levels as a<br />
person’s weight increases as a possible mechanism for the<br />
increased risk.<br />
The Progressive MS Alliance Updates<br />
More than 2.3 million people live with MS worldwide; over one<br />
million have progressive MS. Up to 15% are diagnosed with<br />
primary progressive MS. Whilst there have been advances in<br />
understanding other forms of MS, progressive MS remains<br />
difficult to understand and treat.<br />
The International Alliance was set up to focus research efforts<br />
on progressive MS; Australia is represented through MSRA.<br />
Initial funding was allocated for 22 projects designed to<br />
improve understanding of genetic and biological processes,<br />
repurpose existing drugs and speed up clinical trials. These<br />
one to two year research projects began in 2015, and focus<br />
on six areas:<br />
• Clinical trials and outcome measures<br />
• Biomarkers of progression<br />
• Gene studies<br />
• Rehabilitation trials<br />
• Underlying pathology of progression<br />
• Developing new disease models<br />
Cancer risk associated with Mitoxantrone<br />
Mitoxantrone is an anti-cancer drug that was sometimes<br />
used to treat active MS. Dosage was limited as it is known to<br />
cause damage to the heart muscles. It is already known that<br />
there is an associated increased risk of cancer. This study<br />
followed a group of German patients for a number of years.<br />
They reported that 5% of people or 1 in 20 got cancer. Whilst<br />
life is associated with a cancer risk, this appears high and is<br />
one of the reasons that use of this agent has dwindled.<br />
Conclusion: While the overall incidence of malignancies<br />
was only mildly increased, the risk of leukaemia and<br />
colorectal cancer was heightened. If confirmed, post-therapy<br />
colonoscopy could become advisable.<br />
Buttmann M, Seuffert L, Mäder U, Toyka KV. Malignancies<br />
after mitoxantrone for multiple sclerosis: A retrospective<br />
cohort study. Neurology. 20<strong>16</strong> Jun 7;86(23):2203-7.<br />
Websites of interest:<br />
MS in children online resources from MSIF<br />
Here you can find information about MS in children and<br />
download a parent’s guide.<br />
Visit: msif.org/about-ms/childhood-ms/<br />
MStranslate<br />
This Australian website seeks to bring together “the wealth of<br />
information on MS in a way that makes it accessible to every<br />
element of the community”.<br />
There are a range of links and summaries of various research<br />
studies including those looking into lifestyle modification e.g.<br />
the multiple benefits of exercise.<br />
They collaborate with a range of Australian researchers<br />
including Professor George Jelinek, head of the<br />
Neuroepidemiology Unit at the University of Melbourne.<br />
Visit: mstranslate.com.au<br />
Read more at:<br />
mswa.org.au/researchupdate<br />
<strong>MSWA</strong> BULLETIN SPRING 20<strong>16</strong> | 7
EVERYTHING YOU WANTED<br />
TO KNOW ABOUT THE NDIS<br />
BUT WERE TOO AFRAID TO ASK<br />
NIGEL CAREY, MANAGER NDIS BUSINESS DEVELOPMENT<br />
There may still be some confusion and uncertainty about the<br />
National Disability Insurance Scheme (NDIS) and what it can<br />
deliver for <strong>MSWA</strong> Members.<br />
We hope the following article cuts through any misconceptions<br />
about the NDIS and clearly outlines how it will increasingly<br />
benefit you.<br />
As an extra incentive, you also have a chance to win a<br />
magnificent hamper! Read further to find out more.<br />
What is the National Disability Insurance Scheme or NDIS<br />
for short?<br />
In a nutshell, it’s a Government scheme to support those<br />
people living with a disability which affects their ability to take<br />
part in everyday activities.<br />
This includes people living with all neurological conditions<br />
including MS, Stroke, Parkinson’s Disease, Motor Neurone<br />
Disease, Huntington’s Disease, and Acquired Brain Injury.<br />
The NDIS can provide funding for supports to assist you with<br />
your daily living, home help, personal care, carer respite, allied<br />
health interventions, community participation and funding for<br />
aids, equipment and home modifications.<br />
There is also a focus on early intervention where access to<br />
early supports can potentially reduce the longer term impact<br />
of disability on individuals.<br />
This is highly relevant for people with MS. For example, NDIS<br />
can provide funding to help people with MS who want to stay<br />
in the workforce but struggle with fatigue. NDIS then comes<br />
in to play to fund home help, transport assistance and even<br />
aids in the workplace.<br />
What is so different about the NDIS from what happens now?<br />
There are a number of important differences. Firstly, more<br />
timely access to funding for necessary supports.<br />
And for the first time, you will be in the driver’s seat! You<br />
will have choice and control on how, when and where your<br />
supports are provided; and by whom.<br />
Funds are allocated directly to you for this purpose.<br />
You can also choose the service providers you want. As <strong>MSWA</strong><br />
is a registered service provider, we hope you will allow us to<br />
continue to provide you with the services and supports you need.<br />
Another important difference - once you enter the NDIS, it is<br />
an entitlement for the remainder of your life. You do not need<br />
to keep applying for the services and you can have increased<br />
supports if your needs change.<br />
Sounds great. There must be a catch. What are the eligibility<br />
criteria and what will it cost me?<br />
To be eligible you must be under 65 years of age and a<br />
resident of Australia.<br />
The scheme is free and there is no co-payment required for<br />
services.<br />
The scheme is currently available in the following areas:<br />
• Shires of Kalamunda, Shire of Mundaring and the City of Swan<br />
• Lower Southwest, Cockburn and Kwinana<br />
• Armadale, Murray and Serpentine-Jarrahdale (as of 1 October)<br />
From 1 Jan 2017, it will also be available in Bayswater,<br />
Bassendean, Chittering, Toodyay, York and Northam.<br />
The full state roll-out will take place from July 2017.<br />
Am I eligible for NDIS supports even if I am employed full<br />
time or part time?<br />
Yes, the NDIS is not means tested and there is no co-payment.<br />
It is based on need and what is reasonable and necessary for<br />
achieving your goals.<br />
It seems to open up supports and services for a lot more<br />
people. So how do you apply? Is it complicated?<br />
All you need to do is complete a simple eligibility form.<br />
What then?<br />
If you are eligible, you meet with an NDIS planner and review<br />
the following:<br />
• What do you want to improve in your life?<br />
• What are the personal goals you want to achieve?<br />
• What are the barriers to achieving these goals?<br />
• What support do you need to help you achieve your goals?<br />
Can you provide some examples of goals?<br />
They can be wide and varied.<br />
A goal can be aspirational such as, “I want to return to the<br />
workplace” or “I want to go on holiday with my family with<br />
supports in place”.<br />
A goal may relate to maintaining your current life activities,<br />
your social network or your garden.<br />
A goal may even relate to everyday activities such as getting<br />
dressed, taking a shower, making meals or getting out of bed.<br />
8 | <strong>MSWA</strong> BULLETIN SPRING 20<strong>16</strong>
That certainly seems a more comprehensive approach!<br />
Do you then put in supports to help achieve these goals?<br />
That’s right!<br />
For example, if your goal is to be more social, say to go to<br />
family events or join in on social outings, your funding can<br />
provide in home cleaning, shopping assistance, relevant<br />
mobility equipment and transport. This enables you to more<br />
fully participate in the community.<br />
Another example; say you run your own business but fatigue<br />
issues are affecting your ability to manage both work and<br />
home life. NDIS can provide funding to support you to manage<br />
fatigue and cognitive issues, including OT assessments of<br />
your work place and transport for the days you can’t drive.<br />
This sounds ok in theory but what about in practice? Does it really<br />
work? Do you have any real life examples of how its worked?<br />
Later in this article; you can read about the lived experiences<br />
of two <strong>MSWA</strong> Members who have been through the process.<br />
They have certainly enjoyed and benefitted from their NDIS<br />
journey!<br />
So how can <strong>MSWA</strong> help its Members navigate the NDIS?<br />
We know many Members don’t know what the NDIS is all<br />
about and even what they can ask for.<br />
We now have a dedicated NDIS team ready to help you assess<br />
your eligibility and to understand your goals and develop a<br />
comprehensive plan with a range of supports.<br />
Our team is here to answer all your questions and help you<br />
develop tailored plans which maximize your entitlements.<br />
We also understand MS, its individuality, its variable course<br />
and unpredictable nature. This experience allows us to more<br />
effectively advocate for you.<br />
Incidentally, we will also work with you after the plan is<br />
implemented, to ensure it remains relevant and meets your<br />
changing needs.<br />
In summary, the <strong>MSWA</strong> NDIS team ensures a smooth and<br />
easy NDIS customer journey.<br />
I want to contact the <strong>MSWA</strong> NDIS team immediately! How<br />
do I do this?<br />
You can contact any of the following <strong>MSWA</strong> NDIS team<br />
members:<br />
Mark Douglas: Operations Manager<br />
Email: mark.douglas@mswa.org.au Ph: 08 9365 4824<br />
Christine Richards: Client Relationship Coordinator<br />
Email: christine.richards@mswa.org.au Ph: 08 9365 4867<br />
Pranjal Pawar: Client Relationship Coordinator<br />
Email: pranjal.pawar@mswa.org.au Ph: 08 9365 4810<br />
The <strong>MSWA</strong> NDIS team has sent out letters to our Members<br />
in Armadale, Murray and Serpentine-Jarrahdale. These areas<br />
are in the new trial site which began on 1 October. We hope<br />
to have the opportunity to meet up with you personally if you<br />
live in these areas.<br />
We will also be present at a number of expos and events in<br />
the upcoming months. Please contact us to find out more.<br />
We would be happy to talk further with you!<br />
Finally, your chance to win a magnificent hamper!<br />
Just answer the following three questions about the NDIS:<br />
• What does the acronym ‘NDIS’ stand for?<br />
• What is the age limit for the NDIS?<br />
• Which areas did the NDIS expand to on 1 October?<br />
Email your answers to nigel.carey@mswa.org.au<br />
However, be quick!<br />
Only the first correct reply wins!<br />
My NDIS Story: The Lived Experiences of <strong>MSWA</strong> Members<br />
Anita Gamba<br />
Before <strong>MSWA</strong> and the NDIS I was sad, scared, isolated and lonely.<br />
My body and my life were atrophying. My future looked bleak.<br />
Enter <strong>MSWA</strong> and the NDIS and immediately life exploded with<br />
possibilities and potentials. I was nurtured, cared for and befriended.<br />
Let me list a few of the gifts I have received through the NDIS and<br />
<strong>MSWA</strong> partnership. I have had railings installed in my bathroom,<br />
pool, and walkways. I receive physio and occupational therapies.<br />
A bespoke wheelchair was designed and gifted to me. I can now<br />
move safely around my home and in the broader community.<br />
What greater gift is there other than rekindling my passion for life?<br />
I only hope that I can give back as much as I have received<br />
from these dedicated people.<br />
Kylie<br />
Kylie lives in the Lower South West. She experiences cognitive<br />
symptoms as part of her MS. She is very aware of these<br />
symptoms and they are a cause of great stress and anxiety<br />
for her.<br />
Kylie’s WA NDIS plan included a transdisciplinary approach<br />
to allow her to maintain her independence and well-being at<br />
home and in the community.<br />
Over the last 12 months Kylie’s <strong>MSWA</strong> OT has been able to<br />
provide the following services:<br />
• Custom scripting of a new light weight manual wheelchair<br />
to maintain independent mobility within the home.<br />
• Trial, scripting and purchase of a mobility scooter to allow<br />
Kylie independent access to the community. She is now<br />
able to independently take her puppy for walks and venture<br />
into town without having to rely on others for assistance.<br />
• In-home strategies to help Kylie manage her cognitive symptoms.<br />
One of Kylie’s therapy goals was to be able to prepare a meal<br />
independently for her husband and herself, one day a week.<br />
Kylie’s <strong>MSWA</strong> OT completed a home visit and task analysis of<br />
Kylie cooking a recipe which she selected.<br />
Her OT was able to provide strategies during this task to support<br />
Kylie in:<br />
• Managing MS cognitive and physical fatigue<br />
• Reducing anxiety<br />
• Managing cognitive symptoms which make this seemingly<br />
mundane task very difficult and overwhelming for Kylie<br />
Outcome:<br />
Kylie is now able to prepare a meal independently for her and<br />
her husband, using individualised strategies put in place by<br />
her OT.<br />
<strong>MSWA</strong> BULLETIN SPRING 20<strong>16</strong> | 9
OVERVIEW ON<br />
TYPE 2 DIABETES<br />
Type 2 diabetes is a progressive condition in which the body<br />
becomes resistant to the normal effects of insulin and/or<br />
gradually loses the capacity to produce enough insulin in<br />
the pancreas. We do not know what causes type 2 diabetes,<br />
but it is associated with several modifiable lifestyle risk<br />
factors. Type 2 diabetes also has strong genetic and family<br />
related risk factors.<br />
It is diagnosed when the pancreas does not produce enough<br />
insulin (reduced insulin production), the insulin does not work<br />
effectively, and/or the cells of the body do not respond to<br />
insulin effectively (known as insulin resistance).<br />
Type 2 diabetes represents 85 to 90 percent of all cases<br />
of diabetes. It usually develops in adults over the age of 45<br />
years but is increasingly occurring in younger age groups<br />
including children, adolescents and young adults. It is more<br />
likely in people with a family history of type 2 diabetes or from<br />
particular ethnic backgrounds.<br />
For some people the first sign may be a complication<br />
of diabetes such as a heart attack, vision problems<br />
or a foot ulcer.<br />
Type 2 diabetes is managed with a combination of regular<br />
physical activity, healthy eating and weight reduction. As type<br />
2 diabetes is often progressive, most people will need oral<br />
medications and/or insulin injections in addition to lifestyle<br />
changes over time.<br />
What happens with type 2 diabetes?<br />
Type 2 diabetes develops over a long period of time.<br />
During this period, insulin resistance starts and this is where<br />
the insulin is increasingly ineffective at managing the blood<br />
glucose levels. As a result of this insulin resistance, the<br />
pancreas responds by producing greater and greater amounts<br />
of insulin to try and achieve some degree of management of<br />
the blood glucose levels.<br />
As this over production of insulin occurs over a very long<br />
period of time, the cells in the pancreas that produce<br />
insulin wear themselves out, so that by the time someone<br />
is told that they have type 2 diabetes, they have lost<br />
50-70% of those insulin producing cells. This means that<br />
type 2 diabetes is a combination of ineffective insulin and<br />
not enough insulin. It is a progressive condition and the<br />
progression is related to the ongoing destruction of the<br />
cells in the pancreas that produce insulin.<br />
Type 2 diabetes can often initially be managed with healthy<br />
eating and regular physical activity. However, over time most<br />
people with type 2 diabetes will also need tablets and many<br />
will also need insulin. It is important to note that this is just<br />
the natural progression of the condition, and taking tablets or<br />
insulin as soon as they are required can result in fewer long<br />
term complications.<br />
What causes type 2 diabetes?<br />
There is no single cause of type 2 diabetes, but there are<br />
well established risk factors. Some of the risk factors can be<br />
controlled and other people are born with it. People are at a<br />
higher risk of getting type 2 diabetes if they:<br />
• have a family history of diabetes;<br />
• are older (i.e. over 55 years of age) as the risk increases as<br />
we age;<br />
• are over 45 years of age and overweight;<br />
• are over 45 years of age and have high blood pressure;<br />
• are over 35 years of age and are from the Pacific Islands,<br />
the Indian subcontinent or Chinese cultural background; and<br />
• have given birth to a child over 4.5 kg, had gestational diabetes<br />
when pregnant, or have Polycystic Ovarian Syndrome.<br />
Symptoms<br />
In type 2 diabetes many people have no symptoms at all.<br />
As type 2 diabetes is commonly, but not always, diagnosed<br />
at a later age, signs are sometimes dismissed as a part of<br />
getting older. In some cases, by the time type 2 diabetes<br />
is diagnosed, the complications of diabetes may already be<br />
present. Symptoms include:<br />
• being excessively thirsty<br />
• passing more urine<br />
• feeling tired and lethargic<br />
• always feeling hungry<br />
• having cuts that heal slowly<br />
• itching / skin infections<br />
• blurred vision<br />
• gradually putting on weight<br />
• mood swings<br />
• headaches<br />
• feeling dizzy<br />
• leg cramps<br />
10 | <strong>MSWA</strong> BULLETIN SPRING 20<strong>16</strong>
Eating Well<br />
Healthy eating and an active lifestyle are important for<br />
everyone, including people with diabetes. Having a healthy<br />
diet and being active is an important part of managing<br />
diabetes because it will help manage the blood glucose levels<br />
and body weight.<br />
Meals that are recommended for people with diabetes are<br />
the same as for those without diabetes; there is no need to<br />
prepare separate meals or buy special foods.<br />
Everyone including family and friends can enjoy the<br />
same healthy and tasty meals together. As a guide, it is<br />
recommended people with diabetes follow the Australian<br />
Dietary Guidelines - Healthy Eating for Adults and Children.<br />
What should I be eating?<br />
Eating the recommended amount of food from the five food<br />
groups will provide you with the nutrients you need to be<br />
healthy and prevent chronic diseases such as obesity and<br />
heart disease.<br />
To help manage your diabetes:<br />
• Eat regular meals and spread them evenly throughout<br />
the day<br />
• Eat a diet lower in fat, particularly saturated fat<br />
• If you take insulin or diabetes tablets, you may need<br />
to have it between meal snacks<br />
• It is important to recognise that everyone’s needs are<br />
different. For individualised advice, all people with<br />
diabetes should see an Accredited Practicing Dietitian<br />
in conjunction with their diabetes team.<br />
Energy balance<br />
Matching the amount of food you eat with the amount of<br />
energy you burn through activity and exercise is important.<br />
Putting too much fuel in your body can lead to weight gain.<br />
Being overweight or obese can make it difficult to manage<br />
your diabetes and can increase the risk of heart disease,<br />
stroke and cancer.<br />
Limit foods high in energy such as takeaway foods, sweet<br />
biscuits, cakes, sugar sweetened drinks and fruit juice, lollies,<br />
chocolate and savoury snacks. Some people have a healthy<br />
diet but eat too much. Reducing your portion size is one way<br />
to decrease the amount of energy you eat. Being active has<br />
many benefits. Along with healthy eating, regular physical<br />
activity can help you to manage your blood glucose levels,<br />
reduce your blood fats (cholesterol and triglycerides) and<br />
maintain a healthy weight.<br />
Exercise<br />
Everybody benefits from regular exercise. For people who<br />
have diabetes, or are at risk of diabetes, it plays an important<br />
role in keeping them healthy.<br />
For a person with diabetes, exercise helps:<br />
• insulin to work better, which will improve your diabetes<br />
management;<br />
• maintain a healthy weight;<br />
• lower your blood pressure;<br />
• reduce your risk of heart disease; and<br />
• reduce stress.<br />
Taking care of the feet<br />
Ulcers or other lesions on the feet are a serious danger for<br />
people with diabetes. It is important to avoid foot damage<br />
especially for middle-aged and elderly people.<br />
It is important to:<br />
• always inspect your feet before and after exercise<br />
• avoid exercise that causes stress to the feet (e.g. running)<br />
Exercise which poses minimal weight or stress on the feet<br />
is ideal i.e. riding an exercise bike or brisk walking in good<br />
footwear. Wear comfortable and well-fitting shoes. See a<br />
podiatrist for foot care and advice.<br />
Maintaining a healthy weight<br />
One of the most important aspects of diabetes management<br />
is to maintain a healthy body weight. Being overweight not<br />
only increases the risk of heart disease, stroke and some<br />
cancers, it also makes diabetes harder to manage. Small<br />
changes in diet such as reducing portion sizes and swapping<br />
to low fat dairy products, can help to achieve a healthy body<br />
weight and manage diabetes.<br />
A small weight loss (5-10% of body weight) can make a big<br />
difference to diabetes management and, as a consequence,<br />
reduce the risk of developing complications like heart<br />
disease, stroke and some cancers. If there is a risk of<br />
pre-diabetes (impaired fasting glucose or impaired glucose<br />
tolerance), losing 5-10% of a person’s current body weight<br />
can prevent type 2 diabetes in up to nearly 6 out of 10 people.<br />
Article Credits:<br />
Diabetes Australia<br />
Dee Lucey, Community Access Nurse<br />
<strong>MSWA</strong> BULLETIN SPRING 20<strong>16</strong> | 11
FIVE TIPS FOR GETTING<br />
A MENTAL HEALTH BOOST<br />
FOR PEOPLE WITH MS<br />
LISA MARSHALL<br />
Multiple sclerosis is a condition that affects approximately 2.5 million people worldwide. It is by no means a rare condition, yet it<br />
can make daily life stressful and overwhelming. Maintaining mental health is very important for all people but maybe even more<br />
so for those with a physical ailment. Here are some ways to help improve your mental health and positive outlook when you’re<br />
living with multiple sclerosis.<br />
1<br />
2<br />
3<br />
Find a support network<br />
When no one around you truly understands what it’s like<br />
to have MS, your mental well-being can suffer. Finding<br />
an MS support group puts you in contact with people<br />
who may have been dealing with the effects of MS<br />
longer than you, or are experiencing similar challenges.<br />
These groups offer advice, support, and empathy which<br />
can be hard to find in loved ones who do not fully<br />
understand the impact of MS.<br />
Support groups do not necessarily have to meet in<br />
person. With the unlimited connections the Internet<br />
provides, online support groups are also a suitable and<br />
equally beneficial alternative for many people who are<br />
living with this ailment.<br />
Meditate regularly<br />
Meditation has been shown to both improve mental<br />
health and lessen chronic pain. Additionally, regular<br />
meditation can result in a more positive outlook and<br />
decreased stress levels. Learning to meditate without<br />
guidance can be a challenge, but with the rise of<br />
meditation in mainstream culture, it’s likely you have a<br />
knowledgeable instructor near you. You can also turn to<br />
online guided tutorials to learn how to meditate properly<br />
from the comfort of your home.<br />
Find a form of exercise that works for you<br />
Though exercise with MS can prove difficult, simply being<br />
outdoors can improve your mindset. If possible, exercise<br />
provides added endorphins which have been shown to<br />
benefit mood. Even mild exercise such as a relaxed hike<br />
along a well-kept trail will work as an excellent mental<br />
health break. It’s difficult to be negative when surrounded<br />
by beautiful scenery, particularly if you make outings a<br />
part of your regular routine.<br />
Another great form of exercise for people with MS is<br />
swimming. Spending some time in the pool, whether<br />
you’re doing leisurely-paced laps or water walking,<br />
provides a great cardio workout while being easy on<br />
the joints.<br />
Play games for your memory<br />
Memory loss is a fairly common symptom of MS, which<br />
can be both debilitating and frustrating. The ability to<br />
recall information is a key component to independence,<br />
which is something no one wants to lose. Playing games<br />
meant to maintain memory can help eliminate the<br />
aggravation of forgetfulness.<br />
Remember the positives in your life<br />
Making a list of things you love, appreciate, and are<br />
grateful for can be a useful prop for bad days. Taking<br />
the time to remember how many things you have to be<br />
happy about is often one of the most mentally helpful<br />
activities a person can do. Pin the list somewhere<br />
you see it regularly and don’t be afraid to add to it.<br />
Positivity plays an enormous role in mental health<br />
and while it can be difficult to maintain, having<br />
a physical reminder or motivation, like a list, can<br />
help. Some studies are even showing that a positive<br />
outlook can improve your physical health alongside your<br />
mental wellbeing.<br />
Giving in to frustration can be easy, but remembering to<br />
care for your mental health and overall well-being is an<br />
important part of living. MS may mean more physical<br />
difficulties but it does not have to affect your mental<br />
health. With support, beneficial routines, and a positive<br />
outlook, you can live a more fulfilling life.<br />
Lisa Marshall wanted to start AussieWell.net after meeting some of her long-distance online friends on a trip. Being from<br />
the States, they had a lot of ‘typical’ questions about living in Australia, and so Lisa decided to provide a newcomer’s<br />
guide, a go-to for any and all info on moving to or living in the country. Now that she invests a lot of time in her site,<br />
she continues to think about the safety, wellness, and overall lifestyle advice she can spread to Aussies and their visitors.<br />
Online resources: artofliving.org/au-en/benefits-meditation-0<br />
intheswim.com/eGuides/burning-calories-in-the-pool<br />
4<br />
5<br />
12 | <strong>MSWA</strong> BULLETIN SPRING 20<strong>16</strong>
DR GOOGLE –<br />
TO BELIEVE OR<br />
NOT TO BELIEVE?<br />
LIESL MURDOCH, <strong>MSWA</strong> COUNSELLOR<br />
Which of you reading this article would put your hand up<br />
if asked, “Have you googled MS?” I imagine that most of<br />
you would. And you would not be alone in answering in the<br />
affirmative. In fact, recent research suggests that 8 out of 10<br />
internet users have looked online for health information and<br />
that 66% of these searches were related to a specific disease<br />
or medical problem. 1<br />
Information found on the net can be helpful. It can increase<br />
your knowledge about MS, its possible causes, current and<br />
future drug treatments and help with symptom control and<br />
management. This new found knowledge can also improve<br />
your communication with health professionals, assist you to<br />
make better, more informed decisions regarding your care<br />
and provide you with a sense of control and mastery over this<br />
often unpredictable illness. However, access to this digital<br />
library is not without its pitfalls.<br />
Entering ‘multiple sclerosis’ into the google search engine<br />
will, in 0.41 seconds, produce a staggering 21,200,000<br />
results! But are all these entries verified and accurate?<br />
Regrettably not, for much of what is on the net is unverified,<br />
inaccurate and often contradictory. It is an urban myth that<br />
all that is written on the web has its foundations in honesty<br />
and integrity.<br />
So how does one decide what is reputable? This can be done<br />
by following a few simple guidelines.<br />
Visit reputable websites<br />
Sites ending in edu.au, gov.au and org.au will take you to<br />
dependable Australian websites e.g. mswa.org.au<br />
• edu – pertains to an educational site such as a university<br />
• gov – government bodies<br />
• org – prominent health organisation<br />
American sites: use the above but drop off the ‘au’<br />
UK sites: replace ‘au’ with ‘uk’.<br />
Look at the credentials of the author<br />
• Articles written by people who are specialists in their fields<br />
will post their qualifications and usually supply an address<br />
for correspondence.<br />
• Thorough academic research is usually undertaken by<br />
a team of researchers so multiple authors suggest the<br />
information may be of greater quality and reliability.<br />
• ‘Testimonials’ may give a personal edge to a story but one<br />
person’s experience cannot be broadly applied across a<br />
greater population.<br />
Look at the date of publication<br />
• It’s hard to believe but the internet has been around for<br />
over 20 years so the more recent the date of publication<br />
the better.<br />
Look at what type of language is being used<br />
• Academic information is often presented using formal/<br />
scholarly language.<br />
• Simplified language and sweeping generalisations or claims<br />
can infer a lack of accurate and plausible research and<br />
information.<br />
Does the site feature online/interactive ‘click on here’ ads?<br />
• Often, less reputable sites have ads which make<br />
unreasonable promises. e.g. “lose 10 kg in 10 days”.<br />
Such ads would suggest the accuracy of featured<br />
information may also be as improbable.<br />
• Ads also suggest the web page would not be in existence<br />
without them. Reputable sources have large organisations<br />
and corporations funding their websites.<br />
Avoid sites that require payment for information<br />
Payment for information implies that someone is trying to<br />
make money from the site and their motives in sharing their<br />
information may be less than noble.<br />
Navigating the web for solid and accurate information can be<br />
a daunting task but it can be done. By using these guidelines,<br />
you can increase the integrity of the information you are<br />
reading. The main thing to remember is to be selective in what<br />
you browse through and take on board. Dr Google should be<br />
seen as a complementary tool to your MS management and<br />
not the principal source of information and understanding<br />
about MS. The internet can assist you but it cannot be<br />
an adequate substitute for the knowledge and clinical<br />
guidance by your doctor and other health professionals<br />
involved in your care.<br />
Don’t forget the <strong>MSWA</strong> Health Team can help source<br />
trusted articles, links and verify information for you.<br />
Contact us on 9365 4888 or via our website mswa.org.au<br />
1<br />
www.pewinternet.org/files/old-media//Files/Reports/2011/PIP_Health_Topics.pdf<br />
<strong>MSWA</strong> BULLETIN SPRING 20<strong>16</strong> | 13
EMPLOYMENT<br />
INFORMATION FORUMS<br />
LISA MARSHALL<br />
Earlier in the year, an Employment Forum planned for Bunbury<br />
became an informal gathering better suited to the smaller<br />
numbers who attended. Joshua Boyes, a lawyer from Maurice<br />
Blackburn Lawyers, shared his knowledge and experience of<br />
legal issues on a variety of topics including:<br />
• The potential availability of multiple disability insurances<br />
through Superannuation accounts<br />
• The potential consequences on insurance benefits if you<br />
roll over your Superannuation accounts and/or lower your<br />
working hours per week<br />
• Eligibility requirements included in insurance policies<br />
• Definitions to be met by claimants for the approval of<br />
disability benefits<br />
• Reasonableness in informing an employer of a recently<br />
diagnosed condition and each party’s obligations<br />
The <strong>MSWA</strong> Employment Forums are a great opportunity<br />
for Members to find out more information on issues such<br />
as disclosing your MS to an employer, your rights and<br />
responsibilities at work as well as accessing your<br />
superannuation and travel insurance. The Forums provide an<br />
explanation of the services offered by the <strong>MSWA</strong> OT Team;<br />
supporting people living with MS to stay in the workforce<br />
longer. These include fatigue management programs,<br />
employment assistance, assistive technology solutions and a<br />
sleep advisory service.<br />
The next Employment Forum which will be facilitated by<br />
<strong>MSWA</strong> and Maurice Blackburn Lawyers, is planned for 1<br />
November 20<strong>16</strong> from 5.30 - 7.30pm in Perth. If you are<br />
interested in attending, please contact Sarah Lorrimar<br />
on 9365 4858 or Sarah.Lorrimar@mswa.org.au.<br />
Superannuation Insurance Benefits Joshua Boyes, Maurice Blackburn Lawyer<br />
The typical Australian is severely under-insured for disability,<br />
and it is important to explore every avenue of potential benefit<br />
available to a person when they are unable to work due to a<br />
medical condition. Gaining some monetary benefit to replace<br />
a person’s income-earning capacity can become especially<br />
difficult at times when the condition is such that a person is<br />
unable to take advantage of statutory schemes, such as claiming<br />
for WorkCover payments or a claim through the Insurance<br />
Commission of WA after a motor vehicle accident, for instance.<br />
With the introduction of MYSUPER in January 2014, it is now<br />
compulsory for Super Funds to provide members with default<br />
life and disability insurance. This means when you join with an<br />
employer nominated fund, insurance will be included by default<br />
without the need to fill out a medical questionnaire. However,<br />
Funds have been providing default life and disability insurance<br />
for many years prior to the introduction of MYSUPER.<br />
Not only is life and disability insurance offered by default, but<br />
it is also usually provided with automatic acceptance, meaning<br />
as long as you meet basic eligibility requirements such as being<br />
‘at work’ and doing your usual hours and duties when you join<br />
the fund, you will likely be covered. Pre-existing conditions<br />
are often covered which is a huge advantage, especially for<br />
those people suffering from chronic illness or a family history<br />
of illness which would otherwise limit their insurance options<br />
if seeking cover elsewhere in a stand alone policy.<br />
There are two common types of disability insurance offered<br />
by Super Funds:<br />
• Income protection (IP) which generally provides monthly<br />
payments of 75-85% of your previous earnings (capped at<br />
a specified amount) while you can’t work for a period of 2<br />
years, 5 years or sometimes even up to the age 67<br />
• Total and Permanent Disability (TPD) insurance is a lump sum<br />
you can claim if you cannot return to any work that you are<br />
educated, trained or experienced in as a result of injury or illness<br />
Most Australians have more than one super fund so it’s<br />
important to remember that you could have multiple TPD<br />
insurances if you hold multiple superannuation accounts, and<br />
if so, you can make multiple lump sum claims. IP policies,<br />
however, will usually have an offset clause meaning you can<br />
only claim on one policy and your overall payments could not<br />
exceed 75-85% of your previous income. If you have several<br />
super funds and are thinking of consolidating them all into<br />
one, it is important to check what insurance entitlements you<br />
might lose so you can make an informed decision.<br />
If you or someone you know has already stopped work and the<br />
insurance ceased or the account has been closed, you may still<br />
be able to claim. As long as your account and insurance were<br />
active on the date you stopped work due to health reasons you<br />
should be entitled to claim, even if it was years ago.<br />
If you make a claim and it is rejected, you can lodge an internal<br />
complaint. If you are still not happy with the decision or if you<br />
think the fund or insurer is stalling the claim, you can appeal<br />
to the Financial Ombudsman Service or Superannuation<br />
Complaints Tribunal or take your case to a Court.<br />
Contact Maurice Blackburn on 1800 196 050 for free<br />
advice on any superannuation or insurance questions, to<br />
check your cover or to help with a claim.<br />
14 | <strong>MSWA</strong> BULLETIN SPRING 20<strong>16</strong>
PURCHASING EQUIPMENT?<br />
WE RECOMMEND YOU SPEAK<br />
TO AN OT FIRST!<br />
A large part of an Occupational Therapist’s (OT) work is<br />
providing information, doing assessments and recommending<br />
and prescribing the correct equipment to match the<br />
individual’s needs.<br />
The wide range of equipment includes chairs and seating, rails<br />
and ramps, aids in the kitchen and bathroom, beds, computer<br />
access, scooters and so on. Every assessment is unique and<br />
correct prescription makes all the difference. To make a good<br />
selection, it is advantageous to know what equipment options<br />
are available and what different suppliers stock.<br />
Members and their carer or family need to be involved in the<br />
equipment assessment and selection process because they<br />
know what they require the equipment for, and how it will be<br />
used. It is this working together that leads to the best outcome.<br />
Funding of equipment is a separate issue to the assessment<br />
and selection of equipment. Funding bodies have different<br />
criteria on grant eligibility, which is usually based on income.<br />
Members who are not eligible for these funding grants often<br />
feel alone and disappointed when it comes to accessing<br />
equipment. The National Disability Insurance Scheme (NDIS)<br />
subject to eligibility criteria, will hopefully resolve many of<br />
these issues for Members as it rolls out in the future.<br />
We also occasionally meet Members who have spent a lot<br />
of time and money on equipment but have not made a good<br />
selection, based on their needs.<br />
Our OTs can provide information, assessment and<br />
recommendations to Members and their families even when<br />
the equipment will need to be self-funded. We would like<br />
to help you get it right and to save you from unnecessary<br />
expense and frustration.<br />
Contact the <strong>MSWA</strong> Occupational Therapy Team via<br />
reception on 9365 4888 or email enquiries@mswa.org.au<br />
Rome<br />
wasn’t seen<br />
in a day<br />
Fold, Pack, Travel<br />
1300 622 633<br />
www.scootersAus.com.au<br />
WH20241/<strong>MSWA</strong><br />
<strong>MSWA</strong> BULLETIN SPRING 20<strong>16</strong> | 15
NEWS FROM<br />
SOCIAL WELFARE<br />
IRENE GALLAGHER (WILLIS), SENIOR SOCIAL/WELFARE OFFICER<br />
The <strong>MSWA</strong> Social Welfare team provides psychosocial<br />
interventions that facilitate a Member and their family’s<br />
wellbeing.<br />
We assist individuals, families and groups experiencing social,<br />
emotional or financial difficulties to improve quality of life, by<br />
educating and supporting them and working towards change<br />
in their social environment. The Social Welfare Department<br />
look at what benefits, entitlements and supports are available<br />
for Members and their families.<br />
What do we do?<br />
• Case Management<br />
• Advocacy support<br />
• Carer Support<br />
• Support Coordination of funded NDIS plans<br />
• Take and make referrals from various departments where<br />
they have identified welfare support is required<br />
• At home visits to carry out an assessment. Our goal is to<br />
keep people in their own homes for as long as possible and<br />
maintain their family relationships<br />
We source information and facilitate access to supports<br />
including:<br />
• Accessing support following an exacerbation of MS<br />
• Looking into respite services/residential care/aged care<br />
facilities<br />
• Arranging funding applications and HACC/ACAT assessments,<br />
CAP applications, support in the home<br />
• Provide advice on benefits and support for people on low<br />
income and how to access these supports<br />
• Meet with social workers/other hospital teams to help with<br />
planning discharge<br />
• Providing carers support<br />
• Provide information and direction on financial issues<br />
• Information on benefits and entitlements<br />
• Signpost to other professionals/organisations to enable the<br />
best and most appropriate support<br />
The Social Welfare department has been kept very busy<br />
keeping up with the increased workload. Our department<br />
has now grown to six Social Welfare Officers, including<br />
Gerald who is based in Bunbury and is covering the<br />
South West.<br />
NEW PERTH<br />
BUS PORT<br />
INFORMATION<br />
LINKS<br />
The new Perth Bus Port is opening soon. Because of the<br />
new queueing system, people with disability might need<br />
a bit of extra help to use it.<br />
A short information video can be viewed on the Transperth<br />
Online YouTube channel here: youtu.be/cMc00yHQVB0.<br />
It includes closed captions and an AUSLAN translation.<br />
Full details on the opening of Perth Bus Port,<br />
including upcoming service changes, can be also<br />
found at transperth.wa.gov.au/PerthBusport<br />
<strong>16</strong> | <strong>MSWA</strong> BULLETIN SPRING 20<strong>16</strong>
muMS GROUP - A SHARED<br />
SPACE TO TALK ABOUT<br />
MOTHERHOOD AND MS<br />
SARAH LORRIMAR, HEALTH EDUCATION AND PEER SUPPORT COORDINATOR<br />
The <strong>MSWA</strong> muMS group is a newly formed support group for<br />
women living with MS who are expectant mothers or mothers<br />
of babies and children under the age of seven.<br />
Held every two months at Heathcote Reserve in Applecross,<br />
the group is facilitated by two <strong>MSWA</strong> Counsellors, Liesl<br />
Murdoch and Jean Hudson. Each meeting is semi-structured<br />
but the focus is on the mums sharing their experiences with<br />
each other.<br />
Coming together as a group provides an opportunity for<br />
mums living with MS to meet with others living in similar life<br />
circumstances. The group members offer support to each<br />
other and discuss their concerns, thoughts and feelings. It is<br />
also a place to learn new information, not only on parenting<br />
but also to share their tips on how they manage MS symptoms<br />
that influence their day to day activities. For example, sharing<br />
knowledge on fatigue management and meal preparation.<br />
The muMS group provides a sense of belonging, reminding<br />
Members there are other mums out there living with<br />
MS and when needed, mums can draw on this support.<br />
To keep in contact between meetings, the mums can be part<br />
of a muMS Facebook group that is overseen by one of the<br />
group participants.<br />
The dynamic group has mums who are both new and<br />
experienced, with children aged from infant years through to<br />
preschool. This provides a welcome diversity and variety of<br />
experiences to be shared. Group members come from across<br />
Perth; including Northern and Southern suburbs and out to<br />
the Swan Valley.<br />
Previous meetings have seen around six to eight mums attend<br />
and the group is hoping to expand, warmly welcoming any<br />
new Members.<br />
To make sure you are updated with upcoming events and<br />
groups such as the muMS group, please keep <strong>MSWA</strong> updated<br />
with any new additions to your family to ensure you don’t<br />
miss out!<br />
If you are interested in coming along to the next muMS<br />
group, please contact Sarah Lorrimar on 9365 4858 or<br />
Sarah.Lorrimar@mswa.org.au<br />
Upcoming meetings<br />
Tuesday 18 October, 10am-12pm,<br />
Swan House Meeting Room, Heathcote Reserve, Applecross<br />
Tuesday 13 December, 10am-12pm,<br />
Swan House Meeting Room, Heathcote Reserve, Applecross<br />
NEWLY DIAGNOSED SEMINAR<br />
SARAH LORRIMAR, PEER SUPPORT AND EDUCATION COORDINATOR<br />
On August 11 the Living Well with MS seminar, for people<br />
newly diagnosed with MS, was held at The Boulevard Centre<br />
in Floreat.<br />
These sessions provide an overview of MS and treatments,<br />
an introduction to living with MS and the <strong>MSWA</strong> supports<br />
available. Fortunately, the heavy rains didn’t deter people<br />
from coming along, with a great turnout of 38 attendees,<br />
including some friends and family.<br />
Professor Allan Kermode, an MS Neurologist, started the<br />
evening off by providing a very informative overview of MS. His<br />
presentation explained the different types of MS, symptoms<br />
and potential causes of MS which have appeared over time.<br />
He also discussed the history of treatments for MS and the<br />
range of options available now, including new medications<br />
and current research into improving the management of MS.<br />
Representatives from the <strong>MSWA</strong> Nursing, Counselling,<br />
Occupational Therapy and Physiotherapy teams then provided<br />
brief summaries of the services available at <strong>MSWA</strong>. These<br />
included services such as fatigue management programs,<br />
exercise programs, massage, education and various therapy<br />
options…just to name a few!<br />
The seminar was a wonderful opportunity for people to<br />
meet others living a similar experience whilst being able to<br />
receive useful and valid information from informed health<br />
professionals.<br />
If you would like to attend the next Newly Diagnosed<br />
Seminar or would like any further information for yourself<br />
or someone you know, please contact 9365 4888.<br />
<strong>MSWA</strong> BULLETIN SPRING 20<strong>16</strong> | 17
SELF-COMPASSION:<br />
OUR GREATEST ALLY<br />
SIMON ROLPH, <strong>MSWA</strong> COUNSELLOR<br />
Compassion cannot cure multiple sclerosis (MS). There we<br />
go. I’ve stated the obvious but with expectations now set<br />
realistically low, I will now explain why compassion can be<br />
one of our most powerful allies in our response to a diagnosis<br />
like MS.<br />
Paul Gilbert is a British psychologist, university professor,<br />
founder of compassion focused therapy, and author of books<br />
such as The Compassionate Mind. So it’s safe to say he<br />
knows a little bit about compassion. Paul defines the essence<br />
of compassion as “a basic kindness, with deep awareness<br />
of the suffering of oneself and of other living things, coupled<br />
with the wish and effort to relieve it”.<br />
I’ll start off by addressing the deep awareness of suffering.<br />
I am guessing that if you are reading this you either have an<br />
MS diagnosis or know someone with one. If so, you will be<br />
all too aware of the impact a diagnosis of MS can have with<br />
the potential for emotional pain, physical pain, grief and loss.<br />
Take away the reality of living with MS and we still live in a<br />
world full of suffering. Read a newspaper or watch the news<br />
on any given day and you will witness ongoing tragedy and<br />
pain. Given the world we live in and the hard truth of living in<br />
a body that is susceptible to disease and illness, suffering is<br />
an inevitability. Throw in a highly complex but tricky brain that<br />
has the capability of producing a range of painful thoughts<br />
and feelings, and suffering is but one painful memory away<br />
from being a reality.<br />
Fortunately, it isn’t all doom and gloom. As soon as we are<br />
able to recognise and become aware of our own suffering,<br />
we have choice of how we want to respond. So much of<br />
our lived experiences are out of our control; the world we<br />
are born into, the genes we inherit, the autoimmune<br />
diseases we can develop, but we still have choice of how<br />
we can respond.<br />
Holocaust survivor and author of ‘Man’s search for Meaning’<br />
Viktor E. Frankl famously said:<br />
“Everything can be taken from a man but one thing: the last of<br />
the human freedoms – to choose one’s attitude in any given<br />
set of circumstances, to choose one’s own way.”<br />
This last human freedom provides us with the choice to try<br />
and relieve our suffering with compassion, with kindness. So<br />
what does this look like in real life?<br />
One of the most common MS symptoms is fatigue and in my<br />
role as a counsellor I have had the opportunity to listen and<br />
witness a range of responses to this symptom. These have<br />
included frustration towards the limitations of fatigue, feelings<br />
of guilt towards reduced capabilities, beating themselves up<br />
(metaphorically) as a result of reduced capabilities, pushing<br />
beyond their capabilities with the consequence of exhaustion,<br />
and fear of the future implications of fatigue. Does any of this<br />
sound familiar? Replace fatigue with physical pain, change<br />
in mobility or cognitive changes and many of the described<br />
experiences are still potentially relevant. Frustration, guilt, fear,<br />
self-criticism and many more painful thoughts and feelings<br />
have the ability to show up.<br />
All of these responses are entirely normal and natural and<br />
there is nothing we can do to stop them from showing up<br />
from time to time. However, getting caught up in these painful<br />
thoughts and feelings is often unhelpful and can actually<br />
contribute to further suffering.<br />
A compassionate alternative then is to recognise our initial<br />
response to a symptom such as fatigue (or any form of<br />
suffering), and choose to offer ourselves some kindness.<br />
Rather than beating ourselves up with self-criticism, offer<br />
some words of comfort and support. Rather than push<br />
beyond our capabilities, allow ourselves to have a break and<br />
perhaps a shift in expectation. Rather than getting caught up<br />
in frustration, guilt and fear, acknowledge the presence of<br />
these painful emotions and do something kind and helpful.<br />
This could be something as simple as taking a few deep<br />
breaths, having a glass of water, going for a walk, making<br />
contact with someone who is important to you.<br />
Self-compassion can look very different depending on<br />
the context and isn’t always warm and fuzzy. Sometimes<br />
being compassionate towards ourselves is making the<br />
hard choice; not eating that very tasty chocolate bar but<br />
instead going out in bad weather to get some exercise.<br />
Sometimes it is quitting a job to allow for a new start, leaving<br />
a bad relationship or making painful sacrifices for long<br />
term benefit.<br />
We have many different relationships, whether with friends<br />
or family but the most important relationship we have is with<br />
ourselves. We are constantly in our own company and at<br />
some point we all experience pain. At that point we have a<br />
choice. We can criticise ourselves, beat ourselves up, react<br />
in an unhelpful way, or we can recognise our suffering, offer<br />
ourselves some support and kindness and be our own best<br />
friend. Neither will change the initial cause of the suffering<br />
18 | <strong>MSWA</strong> BULLETIN SPRING 20<strong>16</strong>
ut depending on the approach, the experience itself can be<br />
vastly different.<br />
Being compassionate towards ourselves can be challenging.<br />
Maybe we haven’t had much practice at being self-compassionate.<br />
Maybe we have a belief that kindness and compassion are a<br />
sign of weakness. Maybe we believe that self-criticism can be<br />
motivating and to be honest, it can be at times. But take a moment<br />
and imagine having a donkey to carry your goods to market<br />
(trust me, this is relevant).<br />
For your career as a trader to succeed, you need your donkey<br />
to transfer your products on a daily basis. How do you do<br />
this? Well, you could whip the donkey and cause pain as<br />
motivation to move forward. Or you could dangle a carrot<br />
in front of the donkey, offer support, encouragement and<br />
kindness and reward your trusty steed when you arrive at<br />
the market. Either of these approaches can get the desired<br />
result but in the long term the punished donkey will likely<br />
feel anxious, depressed, have no desire to be loyal and<br />
ultimately lead a rather unhappy existence. The rewarded<br />
donkey may not always get the goods to market on time,<br />
but will be motivated, have a far kinder and trusting<br />
relationship with its owner and will likely have a more<br />
content and meaningful life than the punished donkey.<br />
The choice we have then is what kind of owner do we want<br />
to be to ourselves?<br />
If you would like to learn more about how to have a<br />
greater capacity for compassion and self-compassion,<br />
you can contact the <strong>MSWA</strong> Counselling department<br />
on 9365 4811 to organize an appointment with one of<br />
our counsellors.<br />
For further information on Paul Gilbert, compassion<br />
and a range of relevant books, audio and video content,<br />
please visit the following website:<br />
compassionatemind.co.uk/about-us<br />
<strong>MSWA</strong> BULLETIN SPRING 20<strong>16</strong> | 19
THAT’S LIFE<br />
WITH NARELLE<br />
NARELLE TAYLOR<br />
I haven’t always lived in a nursing home, neither have I always<br />
had to live with multiple sclerosis. I was quite normal and just<br />
before my diagnosis, I lived a robust, even adventurous life<br />
that I thought I would tell you about.<br />
It was 1982 and my husband Greg and I had built and launched<br />
the boat we planned to live on with our three children. We’d<br />
then been and visited both sets of the children’s grandparents.<br />
One set in Sydney, NSW and the other set in Kalgoorlie, WA and<br />
in doing so, we’d given the children a rushed familiarisation<br />
with mainstream Australia’s culture.<br />
We felt that because they’d spent most of their lives in<br />
eastern Arnhem Land in a remote mining community<br />
and had never seen things like a double-decker bus or an<br />
ice-skating rink we were obliged to broaden their horizons.<br />
We’d arranged distance education for them whilst on-board<br />
and had bought the latest technological devices for safety and<br />
labour-saving, whilst we’d be ‘under way’. Consequently, our<br />
suitcases were very heavy and bulging with our goodies and<br />
we flew into Darwin planning to get a connecting flight to<br />
our settlement, board our boat and then commence on the<br />
wonderful adventure we’d planned.<br />
We arrived in Darwin to find the town was full. There were<br />
‘Men At Work’ concerts and a Tax Agents Convention<br />
both happening in the same week. The town being so<br />
popular decidedly inconvenienced us. It was Darwin’s<br />
busiest weekend since cyclone Tracy. Lots of repairs to<br />
cyclone-damaged buildings had been done over the past<br />
few years but to be phoning around town for accommodation<br />
whilst waiting for vacancies on a plane out, was what we<br />
regarded as nightmarish.<br />
One morning, after failing once more to get on a flight, we’d<br />
secured, by phone, one night’s accommodation at a motel just<br />
around the corner. We decided to walk. The streets seemed<br />
to be crowded; Greg and I each carried a heavy, bulging,<br />
suitcase. Greg carried two actually, but neither of us said<br />
anything. We both knew things were bad enough without<br />
embroidering our circumstance by grizzling.<br />
I was tempted to groan though in the sub-tropical heat,<br />
the dense pedestrian traffic, the suitcases that were so heavy<br />
and three children to keep an eye on. The fact that we’d be<br />
able to navigate our boat by satellite, because of what we’d<br />
just bought, but technology had not advanced sufficiently to<br />
put wheels on our suitcases, is curious today, but was at the<br />
time, very uncomfortable. I really felt like groaning. We made<br />
it to the motel.<br />
The motel certainly appeared to be good enough. It would<br />
keep weather out. Mercifully, it was air-conditioned, and<br />
although we had said ‘yes’ to the motel management’s offer<br />
to put all the beds we needed into our one room it sure looked<br />
déclassé when we entered the room.<br />
Eventually the girls wanted to swim. We hoped the swimming<br />
pool would cool us down and brighten our moods. Poised at<br />
the water’s edge, one child screamed, wailed like a Sicilian<br />
widow and staggered backwards away from the pool. Within<br />
seconds her sister did the same and of course, so did their<br />
youngest sister. Floating in the pool was something so germy<br />
and horrible that we, the parents, weren’t going to get wet<br />
either. We returned to our cramped room.<br />
The girls had had a really memorable experience and perhaps<br />
it was that they’d never forget it that made any talking<br />
unnecessary. It was very quiet. Eventually, Greg stood,<br />
changed into a clean shirt, one with a collar (that meant<br />
something serious), kissed me on the cheek and said he’d be<br />
back in a few hours.<br />
He left. We waited. He came back. He’d bought a car.<br />
We’d drive out of Darwin, down to Katherine and then across<br />
Arnhem Land and then we’d be home. There were no roads<br />
into Gove in those days so the trip after Katherine was going<br />
to be on bush tracks; the occasional creek/river crossing,<br />
buffalo herds, brumby packs and kangaroos everywhere.<br />
We planned to sleep in the vehicle (a LWB Toyota Land Cruiser),<br />
and avoid any heroics with snakes or migratory crocodiles. We’d<br />
bought tinned fruit, a can opener, toilet paper (bio-degradable),<br />
spoons, water in huge flagons and we had a compass and a<br />
map that didn’t look all that thorough.<br />
Three days of driving and we were back home, able to see our<br />
boat, above water, and also the bloke who had said to Greg on<br />
the phone in Darwin that he’d buy the car.<br />
We got on-board and unloaded the suitcases at last. We<br />
spent a few days in Melville Bay where we fine-tuned the new<br />
contraptions we’d bought and ventured out to do ‘sea-trials’<br />
before we headed away.<br />
After each day on the water, doing sea-trials etc., we’d walk up<br />
the beach to the boat club and I would be unsteady on my feet<br />
because of what I thought was some ‘sea-leg’ thing. It was years<br />
before I had my unsteadiness investigated and MS diagnosed.<br />
Prior to my diagnosis, I was having great fun doing such<br />
interesting things and even now, I find my diagnosis no reason<br />
for doing things of less interest and no reason to have less fun.<br />
20 | <strong>MSWA</strong> BULLETIN SPRING 20<strong>16</strong>
ANYWHERE<br />
WITH COLIN<br />
ROS HARMAN, SUPER NAVIGATOR<br />
I held out for as long as I could. All around me I saw people<br />
succumbing to the pressures of advertising and peer<br />
pressure, but I was determined to stay strong. I would not buy<br />
a Navigator for my car! No, not even if sometimes I did end<br />
up lost and bewildered up blind alleys, meandering through<br />
unknown suburbs, having to stop, often on the side of roads,<br />
to pour over my ancient street directory.<br />
Then one day an old school friend, coincidentally the<br />
same age as me, fervently pointed out that difficulties<br />
with directions were nothing to do with age or hormones.<br />
“I blame urban growth,” she said, so I decided I would too,<br />
and I bought a GPS Navigator.<br />
My Navigator has transformed my life. I love the fact that I<br />
am able to choose a voice for it, so I picked one that sounds<br />
like Colin Firth. When I’m driving and the voice says – “In<br />
500 metres at the roundabout take the second exit”. I smile<br />
dreamily as I remember that scene from Pride and Prejudice<br />
where Colin Firth comes striding out of the lake all damp and<br />
masculine in his wet shirt. I’m so much more relaxed driving<br />
now with Colin in the car. Sometimes I even take a long drive<br />
just to spend some quality time with him.<br />
I took a long drive with Colin the other day and went to visit my<br />
niece. She is the first of her generation in my family to have<br />
children of her own, and I have discovered that I love being<br />
Great Aunty Ros, or Grunty Ros as they call me. My Great<br />
Niece (Griece?) at two and a half has recently discovered a<br />
new word and manages to use it in every sentence. “Akshully<br />
(actually) me don’t want soup,” she said very firmly today,<br />
stomping her feet to make sure we knew she meant it. “Me<br />
want cake for lunch akshully.”<br />
Her brother, at four and a half, is a passionate devotee of<br />
superheros and invited me to look at his Spiderman T-shirt<br />
and shorts in great detail. He hates to take them off, much<br />
to his mother’s despair. She has managed to buy all the<br />
Spiderman material available in Spotlight so she can make<br />
multiple outfits. The little hero also taught me how to hold<br />
my fingers so they shoot webs out and catch the baddies. I’m<br />
sure I will find that very useful.<br />
Both children are fascinated by my wheelchair and spent<br />
considerable time examining the brakes. Spiderman very<br />
helpfully pushed me around the house and showed me his<br />
toys. We had a little itsy bitsy problem when I decided to go<br />
down a step to see the new trampoline, resulting with me<br />
lying on my back with my legs in the air. It didn’t hurt very<br />
much and he tried very hard to help me up, but in the end he<br />
used his supersonic voice to call his mum who came faster<br />
than a speeding bullet to save the day.<br />
I think super powers run in the family. I wonder what mine<br />
could be. I’ve thought about leaping tall buildings in a single<br />
bound but I don’t really have a head for heights. X-ray<br />
vision would be useful these days; I could save a packet of<br />
money on medical bills. I quite like Wonder Woman’s outfit,<br />
especially her red boots. Every woman craves red boots.<br />
I’m a bit of a romantic, but living with MS has taught me I also<br />
need realism. I think perhaps I might become The Intrepid<br />
Ros, Super Navigator - able to go anywhere “akshully”,<br />
with Colin.<br />
<strong>MSWA</strong> BULLETIN SPRING 20<strong>16</strong> | 21
LIFE SKILLS: WHAT DOES IT<br />
REALLY COST?<br />
DR ANDREW E. ONG<br />
Is intelligence quotient (IQ) the most significant factor in<br />
determining the pathway we choose, and will our IQ determine<br />
the fate and ultimate destiny of our lives? Well the answer is<br />
‘yes’ and ‘no’. Being intelligent is all well and good but not<br />
nearly as much as we’d like to think.<br />
Recent studies have shown that intelligence and logic play far<br />
lesser roles than our feelings and emotions do. Often we think<br />
with our heart, and this can affect almost all aspects of our<br />
lives. It is the life-skills we have acquired which affect how<br />
we use the intelligence we have been blessed with, whether it<br />
be in a fruitful or even inspirational way, or in a self-defeating<br />
and destructive manner.<br />
Life-skills touch our self-awareness, our motivation to do<br />
certain things that may be completely out of character and<br />
certainly far below what we are really capable of. Life-skills<br />
affects our neatness, how we want to present ourselves to<br />
our peers, how we handle significant relationships and our<br />
enthusiasm in life, or the lack of it. Life-skills can make<br />
us ‘rich’ or ‘poor’, whether that be financially, spiritually or<br />
regarding our health, but particularly how and what we think<br />
of ourselves.<br />
We can be as smart as a whip, very intelligent, but without<br />
life-skills this can come at a real cost such as depression,<br />
loneliness, anxiety, drinking problems, juvenile delinquency,<br />
impulsivity, and road rage. These are just a few examples of<br />
the cost of life-skills illiteracy in today’s society.<br />
The list is seemingly endless. Very intelligent people are<br />
not immune to the disruption of their personal and family<br />
life, to divorce, and drug abuse. In fact, it is the erosion of a<br />
cohesive family life of people we might consider smarter or<br />
more talented than ourselves which are all that more visible<br />
to us. If it was possible to drill down further, in such instances<br />
we would find the countless costs in personal tragedies of<br />
missed opportunities and quiet despair all of which point to<br />
an ignorance of life skills or their application.<br />
What could and should have been a caring and nourishing<br />
exchange of view-points often explode into angry hurtful and<br />
harsh overreactions. What starts out as minor slights and<br />
infractions to our ego, which are often not even intended or<br />
real, suddenly become perceived and imagined. Cascades of<br />
change in today’s rapidly advancing technologies make the<br />
inability to adapt even more costly than we can ever imagine<br />
because we have become too involved. It may even cost us<br />
our health, profession, marriage, even our precious life.<br />
Therefore, here are some life-skills techniques for you to<br />
consider. First, there is the influence understanding brings to<br />
the problem, that is the ability for you to understand what<br />
controls your perceptions. Second, divergent thinking or<br />
the thinking skills necessary for you to discover that there<br />
is always more than one answer or solution to the problem.<br />
Convergent thinking is another, that is your ability to maintain<br />
your focus on what you are doing and then prioritising your<br />
choices.<br />
Mapping your life is the life-skill, the capacity, to draw<br />
pathways to show yourself how to get from your present<br />
situation to your desired future. Imagine your future<br />
and visualise in pictures and words your very own thinking<br />
processes.<br />
Instructions for a good life<br />
Eat plenty of brown rice. Give people more than they expect<br />
and do it cheerfully. Memorize your favourite poem. Don’t<br />
believe all you hear, spend all you can spare and sleep all you<br />
want. When you say “I love you”, mean it. When you say “I’m<br />
sorry”, look the person in the eye. Be engaged at least six<br />
months before you get married. Believe in love at first sight.<br />
Never laugh at anyone’s dreams. Love deeply and passionate.<br />
You might get hurt but it’s the only way to live life completely.<br />
In disagreements fight fairly, no name calling. Don’t judge<br />
people by their relatives. Talk slowly but think quick. When<br />
someone asks you a question you don’t want to answer smile<br />
and ask, “Why do you want to know?” Remember that greater<br />
love and greater achievements involve great risks. Call your<br />
mum. Say “bless you” when you hear someone sneeze. When<br />
you lose, don’t lose the lesson. Remember the three Rs —<br />
respect for self, respect for others and responsibility for all<br />
your actions.<br />
22 | <strong>MSWA</strong> BULLETIN SPRING 20<strong>16</strong>
Don’t let a little dispute injure a great friendship. When you<br />
realize you’ve made a mistake take immediate steps to correct<br />
it. Smile when picking up the phone, the caller will hear it in<br />
your voice. Marry someone who you can talk to. As you get<br />
older, their conversational skills will be as important as any<br />
other. Spend some time alone. Open your arms, but don’t let<br />
go of your values. Remember that silence is sometimes the<br />
best answer. Read more books and watch less TV. Live an<br />
honourable life. When you are old and look back you’ll enjoy it<br />
a second time. Trust in God, but lock your car. Do all you can<br />
to create a loving, tranquil home.<br />
Read between the lines. Share your knowledge. It is a way<br />
to achieve immortality. Be gentle with the Earth. Pray. There<br />
is immeasurable power in it. Never interrupt when you are<br />
being flattered. Mind your own business. Don’t trust a person<br />
who doesn’t close their eyes when you kiss them. Once a<br />
year go somewhere you have never been before. The greatest<br />
satisfaction of having wealth is to help others. Sometimes<br />
not getting what you want can be a stroke of luck. Learn<br />
the rules and then break some. The best relationship is one<br />
where you love each other more than you need each other.<br />
Judge your success by what you had to give up to achieve<br />
it. Your character is your destiny. Approach love and cooking<br />
with reckless abandon.<br />
<strong>MSWA</strong> BULLETIN SPRING 20<strong>16</strong> | 23
<strong>MSWA</strong> AWARDS<br />
PHARMACY 777<br />
FOR THEIR ONGOING<br />
COMMITMENT<br />
<strong>MSWA</strong> awarded Pharmacy 777 with its Business Commitment<br />
Award at the 20<strong>16</strong> MS Dinner Auction held in August.<br />
The Award is presented annually alongside an Individual<br />
Commitment Award, and is <strong>MSWA</strong>’s way of highlighting and<br />
acknowledging the generous support provided by businesses<br />
and individuals to the organisation throughout the year.<br />
Nominations are made for businesses and individuals<br />
<strong>MSWA</strong> feel have gone above and beyond in the way they<br />
contribute their time and resources to support the goals of<br />
the organisation.<br />
Pharmacy 777 were awarded the Business Commitment<br />
Award for their amazing fundraising efforts which have<br />
totalled to over $110,000 in the past 5 years. They have also<br />
helped spread awareness about the cause by participating<br />
in the City to Surf as a team running for <strong>MSWA</strong>. Pharmacy<br />
777 entered a team of 38 in this year’s City to Surf where<br />
along with individual runners running for <strong>MSWA</strong>, they raised<br />
$22,000!<br />
<strong>MSWA</strong> CEO Marcus Stafford said, “Pharmacy 777 have<br />
demonstrated their commitment to <strong>MSWA</strong> in the most<br />
phenomenal way.<br />
“Their fundraising has supported an MS Wellness Camp,<br />
contributed to the renovations at <strong>MSWA</strong> high support<br />
accommodation and respite facilities Fern River and Margaret<br />
Doody House and additionally, has been used to outfit our<br />
facilities with essential equipment for our Members.<br />
It is the support and generosity of organisations such as<br />
Pharmacy 777 that allows us to continue to support the<br />
people we are here to serve, people living with MS and other<br />
neurological conditions”, Marcus said.<br />
Kim Brotherson, Pharmacy 777 Managing Director, accepted<br />
the award on behalf of the Pharmacy 777 Group. A long-time<br />
advocate and fundraiser for <strong>MSWA</strong>, Kim is incredibly<br />
proud of the relationship <strong>MSWA</strong> and Pharmacy 777 share.<br />
“We’re driven to make a difference, not just to the health of<br />
our patients but also to the wider community”, he said. “I<br />
appreciate the support from all of the Pharmacy 777 team in<br />
their fundraising efforts for such an important cause. We are<br />
proud to support <strong>MSWA</strong> in the outstanding work they do in<br />
improving the lives of so many people.”<br />
Thank you Pharmacy 777 for your ongoing support and<br />
congratulations on the Award.<br />
24 | <strong>MSWA</strong> BULLETIN SPRING 20<strong>16</strong>
FUNDRAISING<br />
ROUNDUP<br />
MEGA HOME LOTTERY<br />
The MS Mega Home Lottery launched in August 20<strong>16</strong> with<br />
a multi-million dollar grand prize package worth $2.2 million<br />
- our biggest Grand Prize yet. Consisting of a fully furnished,<br />
professionally decorated, Webb & Brown-Neaves show home<br />
in Hillarys, valued at $1.7 million, PLUS $500,000 cash. The<br />
lottery sold out in 3 weeks with the Grand Prize draw to be<br />
held on Wednesday, 2 November.<br />
Keep your eyes on mswalottery.com.au to see if you’re<br />
one of the lucky winners - all tickets have a 1 in 15<br />
chance of winning.<br />
EVERYWOMAN EXPO<br />
The Mundella EveryWoman Expo was held at the Perth<br />
Convention and Exhibition Centre from <strong>16</strong> to 18 June, with<br />
the <strong>MSWA</strong> as its charity partner. In addition to our own MS<br />
stand, a few of our Members and staff got to participate in the<br />
Bodhi’s Bakehouse Celebrity Kitchen with some well-known<br />
‘Perthonalities’!<br />
DINNER AUCTION<br />
The <strong>MSWA</strong> Annual Dinner Auction is an opportunity for us to<br />
thank our supporters from throughout the year with a night of<br />
food, music and of course, fundraising at the State Reception<br />
Centre, Fraser’s in King’s Park. In addition to silent auction<br />
items, we had some amazing items in the main auction including<br />
a luxury holiday for two to Italy, a getaway to Margaret River<br />
and luxury wine packages. $34,341 was raised on the night to<br />
support Western Australians living with MS.<br />
<strong>MSWA</strong> BULLETIN SPRING 20<strong>16</strong> | 25
VOLUNTEERING<br />
UPDATE<br />
DAWN BURKE, VOLUNTEER COORDINATOR<br />
Hello to you all! <strong>Spring</strong> is here so let’s put away our winter<br />
woollies and open our arms to welcome the rays of sunshine<br />
in to our lives. I trust this edition finds you all fit and well and<br />
ready to move into the warmer months. The <strong>Bulletin</strong> is a great<br />
opportunity to reflect on the months gone by and share it<br />
with you.<br />
In May we had the Volunteers Week luncheon. This event, at<br />
Burswood on Swan Function Centre, went off with a bang<br />
and was enjoyed by all. We couldn’t have asked for more;<br />
beautiful food, magnificent views and excellent company. The<br />
room was abuzz with chatter and laughter and I have had lots<br />
of positive feedback with the general consensus being to go<br />
back there again. The staff were amazing from start to finish.<br />
Our Bunbury Volunteers also enjoyed a sumptuous lunch<br />
while watching the sun and the waves at Back Beach Café.<br />
The Moore River Members camp was, as always, a huge<br />
success. We had a couple of volunteers helping out over the<br />
four days. It makes such a huge difference having them give<br />
a helping hand. Of course it was even more helpful to me,<br />
because I don’t have to wash as many dishes!<br />
The weather was all over the place. We had a taste of rain<br />
when we arrived and packed up (typical), and we had a<br />
couple of gorgeous sunny days in between which enhanced<br />
the already spectacular views. We enjoyed the sunshine while<br />
we cruised down the river hearing the story of how Guilderton,<br />
commonly known as Moore River, came to be.<br />
The sun was so magnificent, we were also able to enjoy<br />
another day relaxing down by the river mouth, while we ate<br />
a hearty barbeque lunch, listening to some tunes (with me<br />
dancing around) and soaking up the much needed rays. I must<br />
admit, I was a bit tame this year and only dressed up once. I<br />
could be described as a bit of a colourful fairy, prancing and<br />
dancing around while waving my magical ribbon. A sight you<br />
wouldn’t want to miss, or maybe you would!<br />
All in all, it was a fantastic few days our Members thoroughly<br />
enjoyed, as did the staff and volunteers. I would like to<br />
personally thank our volunteers - Rosalind and Sandra.<br />
Their time and effort was much appreciated and everything<br />
wouldn’t have run as smoothly as it did without them.<br />
26 | <strong>MSWA</strong> BULLETIN SPRING 20<strong>16</strong>
I would also like to thank all the staff who attended. Without<br />
staff these camps cannot happen. In fact, they also continue<br />
to work after hours during the camp in a volunteering capacity<br />
until our lovely Members are off to bed. So at some point all<br />
staff members were a volunteer.<br />
Over to our Rockingham<br />
Centre, John Wallace,<br />
one of our Southside<br />
Volunteers, celebrated his<br />
80th birthday in July. John<br />
has been volunteering as<br />
Santa, donning the red and<br />
white suit for many years<br />
at their Christmas parties.<br />
John is also the resident<br />
photographer for the group.<br />
He has been volunteering with us for many years, unofficially,<br />
but I am pleased to see he now officially volunteers for us.<br />
What a milestone John, and we wish you all the best and trust<br />
you had a special day.<br />
Our dining room chairs at the Wilson Outreach centre are<br />
looking fantastic and are a tad more comfortable, thanks to<br />
our Tuesday volunteer Rosalind. She kindly donated cushions<br />
for our new chairs; the Members and staff are truly grateful<br />
and appreciate your generosity.<br />
Can you believe we are well over half way into the year?<br />
Christmas planning will be on the agenda and possibly in full<br />
swing for some. I feel like I’m still getting over last year and<br />
20<strong>16</strong> is nearly on top of us again.<br />
The theme last year was red and silver and I wonder what<br />
it will be this year, as most of you know I like to dress to<br />
the theme and match the colours of the day. Maybe this year<br />
some of our volunteers might like to get up on stage and<br />
entertain the many who attend each year. I’m happy to join in<br />
with you if you have an idea. Give me a call if you would like<br />
to organise something and we can go from there.<br />
In August I attended a Volunteer Managers Workshop<br />
called Volun-terroir (terroir meaning terrain) conducted by<br />
Andy Fryar of Better Impact. This workshop was amazing.<br />
Andy is a wine connoisseur and a lover of wineries all around<br />
the world.<br />
This workshop was called, ‘What the wine industry can teach<br />
us about good volunteer management’. And guess what?<br />
He was right. The information shared was very timely and<br />
discussed the opportunities, changing demographics and<br />
pitfalls of volunteer management. Throughout the day he<br />
successfully managed to relate his message back to wineries.<br />
For the wine lovers out there, I thought I would share the<br />
interesting history of the wine industry in Australia.<br />
1788 - First vines arrived in Australia<br />
1791 - First known record of successful wine production<br />
1950 - Wineries became better at refrigeration which equated<br />
to a better quality of wine<br />
1960 - A greater selection of fortified wines produced<br />
1970 - More balance in industry and wines<br />
1980 - Australia led the world in cask wine production<br />
20<strong>16</strong> - Australia is the 4th largest exporter in the world<br />
with a huge growth over the years. In 1985 there<br />
were 506 wineries and in 2015 this had increased to<br />
2500 wineries.<br />
I always like to take this opportunity and time to thank our<br />
Volunteers for all that they do. They make such a difference<br />
to our Members lives and the working day of many staff<br />
across several departments. Any time given is always valued,<br />
no matter how little. We at <strong>MSWA</strong> appreciate all of you and<br />
the array of skills, knowledge and diversity you bring to<br />
the organisation. A day doesn’t go by without me learning<br />
something new and it is important for all of us to share, listen<br />
and learn as ‘knowledge is power’.<br />
If you know of anyone wanting to volunteer on a regular<br />
basis, please don’t hesitate to pass on my contact details:<br />
volunteer.coordinator@mswa.org.au or 9365 4897. I will<br />
try and place a volunteer where possible, and be creative<br />
in finding a suitable position for both the volunteer and/<br />
or individual department. Alternatively, if you are looking<br />
at volunteering once or twice a year, you could contact<br />
the Senior Events Coordinator, Katherine Fowler at<br />
katherine.fowler@mswa.org.au or 6454 3151. That’s all<br />
from me. Until next time and bye for now.<br />
<strong>MSWA</strong> BULLETIN SPRING 20<strong>16</strong> | 27
iPAD DONATION WELL-RECEIVED<br />
BY FIONA STANLEY HOSPITAL<br />
MEDICAL DAY PROCEDURE UNIT<br />
Digital magazines, colour therapy, games and MS educational<br />
resources are all part of the new Medical Day Procedure Unit<br />
iPads package provided by <strong>MSWA</strong>.<br />
Dee Menzies, <strong>MSWA</strong> Hospital Liaison Nurse commented that<br />
the newer MS therapies have seen patients shift back to the<br />
hospital setting for their treatment rather than in the home.<br />
We conducted a short survey of patients about the types<br />
of resources and entertainment they would most like to see<br />
on the iPads. This guided us in choosing the selections we<br />
have uploaded.<br />
“With patients having to spend more time in hospital, it<br />
is important to make their treatment as comfortable as<br />
possible,” Dee said. “We are hoping the iPads will help pass<br />
the time.”<br />
Eloise DeRosa, the Unit Nurse Manager said, “the six iPads<br />
are a great educational resource and will also provide MS<br />
patients with entertainment while they receive treatment.<br />
<strong>MSWA</strong> will regularly update the iPads and continue to monitor the<br />
level of satisfaction through patient and staff feedback.<br />
“<strong>MSWA</strong> were very kind to support us by purchasing these<br />
resources,” Eloise said.<br />
<strong>MSWA</strong> staff will add new resources to the iPad’s regularly<br />
to provide variety.<br />
MARGARET DOODY RESPITE<br />
HOUSE NEWS<br />
CHRIS RUSH<br />
All PLC Year 10 students are expected to undertake a personal<br />
project. It doesn’t have to be service related, however, Ruby<br />
Cownie is a neighbour and fairly frequent visitor to Margaret<br />
Doody Respite House, so she decided the house needed<br />
brightening up. Ruby spent many hours creating this beautiful<br />
mosaic which has been hung in the courtyard where it will be<br />
most visible to all.<br />
The glass tiles were provided by Frank Cardinale, at Original<br />
Ceramics in Leederville, who was happy to donate to such a<br />
good cause.<br />
The staff and Members would like to offer our heartfelt<br />
thanks to Ruby for all the time and effort she put into this<br />
wonderful project.<br />
28 | <strong>MSWA</strong> BULLETIN SPRING 20<strong>16</strong>
SOUTH WEST<br />
Regional Round Up<br />
The latest<br />
news from<br />
the South<br />
West<br />
BUNBURY SERVICES HUB<br />
PROGRESSING NICELY!<br />
SUE SHAPLAND<br />
As mentioned previously, we are very excited to finally see<br />
our long held plans for a purpose built Bunbury Services Hub<br />
being realised. The progress is remarkable and having had a<br />
short tour of the shell, the floor plan is very impressive!<br />
The generous sized physiotherapy gym, massage room,<br />
meeting areas and consulting rooms will all be welcomed<br />
by Members and staff. The Outreach Group has re-located<br />
several times over the past 13 years and to finally have a home<br />
with areas designed to suit the purpose will be refreshing.<br />
We are on track for the building to be completed by the end<br />
of 20<strong>16</strong>! <strong>MSWA</strong> has funded both the purchase of the land<br />
and the construction of the facility. This is all made possible<br />
through the great success of our Events and Fundraising<br />
ventures like the highly successful Mega Home Lottery!<br />
BUNBURY AFTER HOURS<br />
HOME DOCTOR<br />
• FREE DOCTOR HOME VISITS<br />
• BULK BILLED VISITS (NO CHARGE TO YOU!)<br />
(MUST HAVE VALID MEDICARE CARD, OTHERWISE FEE APPLIES)<br />
• DOCTOR VISITS YOU<br />
• AFTER-HOURS SERVICE<br />
• ON THE DAY APPOINTMENTS<br />
CALL NOW TO BOOK<br />
1300 DR TO ME (1300 37 86 63)<br />
WWW.HOMEDOCWA.COM.AU<br />
<strong>MSWA</strong> BULLETIN SPRING 20<strong>16</strong> | 29
WILSON OUTREACH NEWS<br />
NICOLA RYAN, RESOURCE COORDINATOR<br />
DAWN<br />
BEAUTIFUL<br />
BURKE,<br />
QUILTS<br />
VOLUNTEER<br />
GIFTED<br />
COORDINATOR<br />
TO <strong>MSWA</strong> MEMBERS<br />
The W.A Quilters Association representative Cathy Robertson,<br />
recently visited Wilson Outreach Centre again, bringing with her<br />
another two large bags of amazing quilts made by members of<br />
their Association.<br />
These quilts have been kindly donated to our Members; to<br />
brighten their lounge chairs and beds or just to keep their<br />
knees warm. Sheila, Narelle and Janice were on hand to pick<br />
their favourites from the pile and are thrilled to have them in<br />
their possession.<br />
The Quilters Association have been friends of <strong>MSWA</strong> for a<br />
few years now. They have generously donated quilts for<br />
each resident of our high support accommodation facilities<br />
including Fern River, Hamilton Hill and Treendale Gardens,<br />
and both respite homes.<br />
Cathy said the group thoroughly enjoy passing on their beautiful<br />
quilts to community groups like <strong>MSWA</strong> and has assured us she<br />
will be returning with more! These quilts are really beautiful<br />
and bring a welcome splash of colour with them.<br />
We would like to thank Cathy and her fellow quilters for<br />
their ongoing generosity.<br />
WILLETTON BUNNINGS SUPPORTING<br />
WILSON OUTREACH<br />
The wonderful staff from the Bunnings Willetton store have<br />
once again visited us at Wilson. They also joined in our<br />
Mexican Fiesta happily wearing their sombrero hats!<br />
This store has been very generous to us here at Wilson. They<br />
have supplied vegetables for our raised garden beds as well<br />
as staffers. Bec and her assistant came along to plant them!<br />
Member Sheila Hayfield particularly has a love of our garden<br />
beds here at Wilson, she can often be seen tending to them<br />
whilst here at Outreach. Sheila is pictured here with the<br />
Bunnings staff and some of our beautiful, healthy looking<br />
vegetables. So far the crop has yielded a dozen or so potatoes,<br />
beans and some lovely herbs.<br />
Currently there is a fierce<br />
competition among our<br />
Members, from several<br />
Outreach Groups and<br />
our residential facilities,<br />
which is due to finish at<br />
the end of August. We<br />
have all been vying for<br />
the title “Winner of the<br />
best vegetables grown<br />
over the winter season”.<br />
The results will be<br />
reported in the next <strong>Bulletin</strong> so watch this space!!!!<br />
OLA OLA!<br />
‘Mexico’ at Wilson Outreach was a huge success.<br />
Staff, volunteers and Members all made a fantastic effort with<br />
their costumes and really had a fun time singing and dancing!<br />
We were lucky enough to have a visit from ‘Nicko’ who played<br />
his piano accordion whilst walking around the atrium!<br />
We even had our very own ‘Pablo’, who was made by our<br />
Members in preparation for the ‘Fiesta’ party at the end of our<br />
trip to Mexico. He was used as a piñata and looked fabulous<br />
until of course he was broken to pieces!<br />
Our month in Mexico was very colourful and was<br />
thoroughly enjoyed by everyone!<br />
30 | <strong>MSWA</strong> BULLETIN SPRING 20<strong>16</strong>
ALBANY OUTREACH NEWS<br />
CAROLINE CLARK-SMITH<br />
Want to know what is happening at the Outreach or make an<br />
appointment with our MS Nurse Maureen? Then give us a call<br />
on 9841 6651 and we will send out this month’s program.<br />
The annual Members Camp is on in Denmark in November.<br />
Places are limited so if you are interested in attending or need<br />
more information please give Sumit a call on 08 9365 4888.<br />
Thank you to everyone who has given us their feedback and<br />
their ideas on outings and activities for the group. We really<br />
value your feedback and are grateful for your input.<br />
We celebrated Volunteer Week in May with a luncheon<br />
sponsored by <strong>MSWA</strong>. It was a lovely get together and the<br />
first time we have had the opportunity and we are already<br />
looking forward to next year’s! Our small but dedicated group<br />
of volunteers help out with all sorts of fundraising activities<br />
and play a huge role in the annual Swim. So a big thank you.<br />
BEECHBORO OUTREACH NEWS<br />
GISELLE MARTIN, RESOURCE COORDINATOR<br />
Here at Beechboro, we are all very much looking forward to<br />
the warmer weather as it has definitely been way too cold this<br />
winter for our liking!<br />
We spent June trying to stay warm with a few wintery games<br />
like ‘snowball basketball’ and ‘air ice hockey’. We also enjoyed<br />
some nice warming curry lunches from our brilliant Brenda<br />
and her team!<br />
In July, we brought the glam to The Lodge and spent our days<br />
living it up in ‘Las Vegas’. We tested our luck with a roll of the<br />
dice and tried a hand or two of cards. Our last week finished<br />
with a photo booth, where fun props and a city backdrop<br />
provided a lot of fun and many unique keepsake photos!<br />
Christmas is fast approaching so if you have any suggestions<br />
for a suitable lunch venue please let us know. Perhaps<br />
somewhere we have been before or a new one; we are open<br />
to ideas.<br />
We would like to thank the <strong>MSWA</strong> staff who have visited from<br />
Perth, Gail, Sue and Lou, and Leonie from Bunbury. We are<br />
grateful for the time that you have taken to come down and<br />
update us on what is happening.<br />
We are waiting to hear about a visit from an OT so we will<br />
keep you posted.<br />
If you have an email account, you can send us a note at<br />
albany@mswa.org.au and we can add you to our mailing<br />
list and keep you updated on what is happening.<br />
In August we focused on the Rio Olympics, as we barracked<br />
for green & gold!! We even had our own ‘mini games’ going<br />
which included shooting, bowling, javelin and more. Go<br />
Australia!<br />
Sadly, we had to say goodbye to our Physiotherapy Manager,<br />
Marilyn, who retired after 23 years of service at the <strong>MSWA</strong>.<br />
We had a lovely farewell morning tea and showered her with<br />
gifts of appreciation from the Members and staff!<br />
Best of luck Marilyn and thank you!<br />
SOUTHSIDE OUTREACH GROUPS NEWS<br />
ANGIE WALLACE<br />
We all love a Christmas in July and our team at Southside<br />
didn’t disappoint!<br />
Lovely handmade decorations, a Christmas quiz, a delicious<br />
turkey lunch with all the trimmings and Santa made up the<br />
day! There was no snow however! Our Santa for the past<br />
nine years has been volunteer John. It was also John’s 80th<br />
birthday weekend, so instead of plum pudding we had John’s<br />
favourite - Black Forest cake complete with candles.<br />
We’ve enjoyed some interesting activities on Friday mornings<br />
such as – jewellery making, mosaics and sun catchers. In<br />
our ‘snapshot corner’ we’ve had experts from Wilson visiting<br />
to talk about subjects to help us in our MS journey: Sleep<br />
disorders, swallowing etc. Thanks to nurse Sandra along with<br />
physios/OTs and other specialists. We appreciate your time!<br />
Our physio area has added a Pilates machine and several<br />
Members are enjoying the benefits. Commencing shortly,<br />
we’ll have a new masseur for our Thursday morning sessions.<br />
Massages are very important to MS bodies.<br />
Brian and Sally are in Scotland for eight weeks, Trish and<br />
Rex are in Spain and UK visiting relatives and adding on a<br />
cruise down the Rhine! Angie and John are spending four<br />
weeks in Sydney with family in NSW and have family visiting<br />
from Japan. Jenny and husband are caravanning across Oz<br />
for a couple of months. Very impressive Jenny! Peter and<br />
Rose, and Doug and Anne have also been cruising in the past<br />
few months. We could be opening up the ‘Southside Travel<br />
Consultants Ltd’ division of MS! Just kidding! Looking forward<br />
to a few travel stories soon.<br />
<strong>MSWA</strong> BULLETIN SPRING 20<strong>16</strong> | 31
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