MSWA Bulletin Magazine Winter 16

ulletin
The Official Magazine of the MS Society of WA | mswa.org.au
Winter 2016
Reducing the risk of falls
MSWA Peer Support Groups
Protect yourself against the flu
My excellent Rottnest Island adventure

Inside | Winter 2016
Letter from the Editor
Dr Greg Brotherson
The Multiple Sclerosis
Society of WA (Inc.)
Letter from the Editor 3-4
From the desk of the CEO 5
A message from the General
Manager – Member Services 6
Protect yourself against the flu 7
2015 Member Services Survey Results 8-9
Round-up of research and
other items of interest 10-13
Swallowing: Everyone’s doing it.
But no one is talking about it! 14
Thermomix Competition 14
Calcium, Vitamin D and MS 15
Reducing the risk of falls 16
New Staff – Occupational Therapy 16
NDIS Update 17
MSWA Peer Support Groups 18-19
MS is a family matter –
an article on family resilience 20-21
Insuring your Mobility Scooter 22
Equipment Matters 23
That’s life with Narelle 24
On The Buses 25
Volunteering News 26
The law of infinite potentiality 27
Member in Focus –
The day my life changed 28
Community Fundraisers 29
Fundraising Round Up 30-33
South West regional round up 34-35
My excellent Rottnest
Island adventure 36-37
Wilson Outreach news 37
ANZAC Day at Wilson Outreach 38
Southside Outreach news 39
Margaret Doody Respite House funding 39
WILSON CENTRE
29 Parkhill Way (08) 9365 4888
Fax (08) 9451 4453
Freecall 1800 287 367
See Health Team Dept contacts on this page
Member Services
Directory
GENERAL MANAGER – MEMBER SERVICES
Sue Shapland: 9365 4840
INDIVIDUAL OPTIONS
Manager Community Care Programs,
Gail Palmer: 9365 4851
NDIS TEAM 1800 287 367
OUTREACH GROUPS
Wilson Outreach (Mon-Thurs): 9365 4830
Beechboro Lodge (Mon, Fri): 9377 7800
Southside Outreach (Fri): 9592 9202
Bunbury Outreach (Wed): 9791 2472
Albany Outreach (Fri): 9841 6657
BUNBURY OFFICE
9 Ramsay Street 9791 2472
BUSSELTON OFFICE
1/21 Cammilleri Street 9754 2320
MARGARET DOODY RESPITE HOUSE
Manager, Chris Rush: 9385 9574
FERN RIVER ACCOMMODATION
Manager, Liz Stewart: 9356 2747
HAMILTON HILL ACCOMMODATION
Manager, Jayne O’Sullivan: 9331 5780
TREENDALE GARDENS RESPITE &
ACCOMMODATION
Manager, Linda Kidd: 9725 9209
Contact Us
If you would like to comment
on anything you read in this
Bulletin please email
bulletin@mswa.org.au
or write to
MSWA, Locked Bag 2,
Bentley DC WA 6983
The Bulletin can also be viewed at
mswa.org.au/bulletin
Editorial Committee
Greg Brotherson (Editor), Marcus Stafford (CEO),
David Bugden, Sue Shapland, Ros Harman,
Libby Cassidy, Sandra Wallace, Narelle Taylor,
Leonie Wellington, Bhavna Jagtiani, and Dawn Burke.
The Editor welcomes unsolicited submissions.
All articles are subject to a reviewing process.
The views expressed are those of the Authors
and do not necessarily reflect the view of the
Society’s staff, advisors, Directors or officers.
NURSING Our nursing team is usually the first point of contact, after the neurologist,
for anyone diagnosed with multiple sclerosis. We’re committed to providing holistic support
so you have a greater understanding of what to expect from your condition.
Manager: Lou Hatter on 9365 4809
Hospital Liaison Nurse (S.C.G.H.): 9346 3333
Community Nurses: 9365 4812, 9365 4838, 9365 4870, 9387 4846 or 9365 4888
PHYSIOTHERAPY Physiotherapy aims to provide treatment interventions to develop and
maintain mobility and function. Our physiotherapists are experts in movement and function,
and work in partnership with Members to attain the highest possible level of independence.
Manager: Marilyn Sylvester on 9365 4837
Physiotherapy Office: 9365 4834
OCCUPATIONAL THERAPY Occupational therapists work with Members, and clients,
to enable them to continue their work and other interests for as long as possible, where they
may otherwise have been limited by their condition.
Manager: Sandra Wallace on 9365 4804
An occupational therapy contact can be reached on 9365 4888
COUNSELLING Some people need support to deal with the news that they have MS,
and the challenges that may present over time. Our qualified counsellors provide a safe
space for you to explore your concerns, in a safe and confidential environment.
Manager: Lisa Papas on 9365 4836
Support Counsellors: 9365 4808 or 9365 4811 Peer Support Program: 9365 4808
Welfare Officers & Funding Locators: 9365 4889 or 9365 4835
INDIVIDUAL OPTIONS We are able to supply limited in-home support such as
assistance with personal care for people with disability due to multiple sclerosis, to help
them remain in their homes. Care and supports are provided through a combination of
funding from the Disability Services Commission (DSC) and our own fundraising efforts.
We also manage DSC allocated individually funded care packages.
Contact us on 9365 4851 for more information.
CAMPS & RECREATION
MSWA provides separate recreation camps for Members, carers, and families, primarily
funded by Lotterywest, and for a nominal cost to participants. These camps provide a
break from daily routines, and strengthen friendships and support networks.
Coordinator for Camps & Recreation: 9365 4843
The MS International Federation launched
World MS Day with the theme ‘Stronger Than MS’.
The World MS Day campaign commenced on Wednesday, 25
May with the subject ‘Stronger than MS’. This empowering
theme of independence is an invitation for people with multiple
sclerosis to write about how they live with their condition.
With this campaign in mind, your team at the Bulletin treadmill
is asking people with multiple sclerosis in WA to complete the
phrase “MS doesn’t stop me…”, and then send your stories
to bulletin@mswa.org.au
Subject to our reviewing process, we will include your story
in the next issue of the Bulletin. Along with your story, if you
wish, you can attach a photograph.
World MS Day is an annual campaign to raise awareness, and
to also support and connect with the 2.3 million people living
with the condition worldwide. Multiple sclerosis is found in
every country where studies have been conducted. However,
despite advances in treatments for the relapsing-remitting
types of the disease, over one million of us live with progressive
forms of multiple sclerosis for which there is no treatment
(not at present, but target-specific research continues).
Each form of multiple sclerosis, be it the relapsing-remitting
type or progressive form of the disease, will produce a range
of different stories. The invitation for you to tell your particular
story about how you became stronger than MS – and for
you to have your story published in the Bulletin – is so that
other people coming to grips with their condition may find
inspiration to help them also become stronger than MS.
In this issue of the Bulletin you might begin your story after
reading what Sarah Lorrimar, Health Education and Peer
Support Coordinator, has to say about coming to grips with
your condition by joining an MS support group.
“Support groups seek to provide a comfortable and
understanding environment which encourages people to open
up and speak about their concerns and feelings. By giving
and receiving advice, members of a support group can better
understand MS and the different ways in which it can impact
people’s lives.”
Another helpful article is by Monique Chas, MSWA Counsellor
who talks about resilience, or ‘bouncing back’ from
devastating news.
“A common misapprehension is that resilient people are free
from distressing emotions or thoughts, remaining optimistic
in most or all situations. To the contrary, resilient individuals
have, through time, developed coping techniques that allow
them to effectively navigate around or through crisis.”
Then we have been able to include Member Peta Thompson’s
story about the day her diagnosis changed her life, but
importantly how Peta reshaped her outlook with a unique
coping mechanism.
The carers of people with multiple sclerosis are not forgotten,
either. How do the spouses and partners of people with
multiple sclerosis remain stronger than the condition? We
would also like to hear from carers. Carers will find an article
by John Wallace, who attended an MS Carers’ Camp on
Rottnest and then found himself ‘in care’. Without our spouses
and partners remaining stronger than MS, many people with
multiple sclerosis would be in trouble. Spouses, partners and
families involved in caring for people also have needs that will
allow them to remain stronger than MS. The Society respite
homes are available for Members, and camps for carers play
an important role in the coping process.
Regular articles from Narelle Taylor and Ros Harman are
another source of inspiration. The highly intelligent and
irrepressible Narelle makes light of her significant neurological
load of problems; being in a wheelchair and coping with life in
a nursing home. Widowed by the sudden death of her beloved
husband Greg, who was larger than life and a devastating
loss to the family, her wicked sense of humour and the means
to travel make her stronger than MS. Narelle’s articles have
inspired and entertained our readers for years.
Readers have also found inspiration in the articles by the
informative and independently-minded Ros Harman who is
determined to live a full life, on her own terms at home in
the community. On this occasion Ros tells us how she took
on what to many of us in a wheelchair consider to be an
awesome task — using public transport. Read about ‘Ros on
the buses and ferries’ on pg 25. By going out of her way to
enjoy a public service most people take for granted, and scary
when alone in a wheelchair, Ros is also telling us how she is
stronger than MS.
Elsewhere in this issue our CEO, Marcus Stafford, focuses
on the changed timeframes to the full NDIS rollout in WA. In
her article, Sue Shapland talks about the positive impact the
NDIS is having on the lives of people. There is also a complete
roundup of the latest research by Sue, and details of the
recent Members Survey she conducted.
continued overleaf
2 Winter 2016 The MS Society of Western Australia The MS Society of Western Australia Winter 2016 3

Editor Letter continued
There are articles from the Occupational Therapy Department
on the need for calcium in your diet, swallowing, avoiding falls,
and the maintenance of your equipment. The OT Department
has specialist occupational therapists working in all areas of
our lives that along with a ‘wellness’ program, will help you
become stronger than MS.
Volunteering news and all of the latest State-wide Outreach
News completes the magazine. This is a ‘bumper-edition’
packed full of information, contributions from our readers and
the latest politics of disability — and what we hope is the
beginning of a series of inspirational stories about how you
have become stronger than MS.
REGISTER YOUR
INTEREST NOW AT
OCEANRIDEFORMS.ORG.AU
Finally, as June 30 approaches, budgets for the new financial
year will be approved and the Society’s books ruled-off and
ratified by the Auditor; your team at the Bulletin would like
to thank the fundraising department on your behalf for their
massive contribution to the Society’s success, which can only
make our strong Member-oriented Society even stronger. You
will have to wait until the Annual General Meeting in October
when the President, George Pampacos, will announce just
how successful the Society has been once again. But in the
meantime I can say that the “Society is stronger than MS.”
To our readers let me just add that your stories also inspire the
Bulletin team, because each of you have something different
to add to the larger picture. Pulling together as a Society, we
will always be stronger than that nasty piece of work called
MS (a real stinker hiding behind an acronym).
Thank you for your ongoing support and don’t forget
to pay your fees ahead of the AGM to ensure your
vote counts.
SUNDAY, 4 DECEMBER 2016
A UNIQUE CYCLING EVENT THAT TAKES RIDERS
ALONG THE COAST FROM FREMANTLE TO HILLARYS
I’m pleased to say that the MS Society has gone from strength
to strength in 2016. This success stems from the huge
efforts of the broader team, including our 550 staff, Members
and volunteers.
Our Brand, Marketing, and Sales team is responsible for
all of the activities that create awareness of MS within the
community. And of course these activities also raise a large
percentage of the funds that go towards providing services
and support to our Members as well as funding MS research
into a cause and cure for the condition.
On May 1 the team celebrated a significant milestone with
the 10th Step Up for MS – one of our marquee events. What
an amazing achievement to be running such a successful
event for a decade. Over this time 7,836 people have climbed
the 1,103 steps of Perth’s Central Park building, raising an
incredible $1.3 million. We are very proud of this event. To all
who have stepped up for us over the years, thank you!
The team has also run a number of other events in the last couple
of months including MS Albany Swim, MS Bunbury Swim, MS
Bridges Night Ride and of course the Stadium Stair Race. These
events are an integral part of our links to the community.
May 25 was a significant day for our Members as we
recognized World MS Day (WMSD) and again this year, we
took to the streets to raise awareness and to shake the can
to raise funds. I would like to say a particular thank you to our
ambassador and all round great bloke Josh Kennedy, who was
part of our fun online campaign ‘Help JK beat 2K’. This has
been a significant way of raising awareness of MS amongst
the general public through social media. Thank you Josh for
your help with this, and for all you do for MSWA throughout
the year. You can read more about what took place on WMSD
on page 32 of this edition of the Bulletin.
Since our last Bulletin edition, there have been some
significant changes regarding the National Disability
Insurance Scheme (NDIS) roll out in Western Australia.
The Commonwealth and WA State Governments recently
announced they would finalise their plans for the State-wide
NDIS rollout by October 2016, with the full rollout expected to
commence on 1 July 2017.
There has been some conjecture about whether WA will
be disadvantaged due to the delay in signing the formal
agreements. My pragmatic view of this is that, to quote the
Bard, “All’s well that ends well.”
From the desk of the CEO
Marcus Stafford
In the meantime, the current trial sites will be expanded to
allow an additional 2,700 people to access the NDIS in WA
until the final model is rolled out. The WA NDIS, formerly
known as ‘NDIS My Way’ currently operating in the Lower
South West and Cockburn-Kwinana areas, will be expanded
to include Armadale, Murray and Serpentine-Jarrahdale from
1 October. The National Disability Insurance Agency (NDIA)
model in the Perth Hills will be expanded from 1 January to
include Bayswater, Bassendean, Chittering, Toodyay, York
and Northam.
What remains unresolved is the management of the Scheme.
I have had the opportunity to meet formally with the Federal
Social Services Minister, Christian Porter in Canberra and to
chat separately with the WA Minister for Disability Services,
Donna Faragher. Pleasingly they have both expressed their
desire to resolve the governance and management issues by
October. Although I understand and respect that many things
must be resolved within the negotiation process, I am both
optimistic and confident that the right decision will be made
for the WA NDIS to remain under the State’s overarching
management within a national framework. Longer term, I
believe this is very important for people with MS and other
neurological conditions living in this State. It will ensure both
a fair and equitable Australian scheme, but with the local
factor ensuring a flexible and responsive system built on the
needs of the person with the disability.
So, how is MSWA doing in the trials so far? The short answer
is – very well indeed! Ninety-eight percent of all people with
MS have selected the Society as their preferred provider of
services. In addition, 25% of our ‘customers’ within the trial
sites have other neurological conditions. Interestingly half of
those folk have had no relationship with us before now and
have selected us due to our reputation as the leader in our
field and due to our sustained performance. There is no room
for complacency, but I am very pleased with the early signs.
Why is it important to court people with other neurological
conditions to our store? Put bluntly, without them we will not
be able to continue to provide the level of service that we
currently do to newly diagnosed, low support people with MS
and folk aged 65 and over.
In essence, it is the margins derived from this new ‘business’
that will allow us to continue to provide services to people
with MS who will not be eligible for NDIS funding.
We look forward to the continuation of our successful
journey with you and to the further expansion of
our services to both people with MS and other
neurological conditions.
4 Winter 2016 The MS Society of Western Australia The MS Society of Western Australia Winter 2016 5

A message from the General Manager
– Member Services Sue Shapland
“All great changes are preceded by chaos”
Deepak Chopra
Protect yourself
against the flu
One such hugely significant change is the NDIS. Launched
a year earlier than expected, initially the scheme was still
undergoing further design whilst the trial sites had begun
in several of the Eastern States. Most of us remember the
cartoon depicting the ‘NDIS plane’ flying with ‘mechanics’
busily working on the outside referring to some of the
organised chaos that heralded the start. Not quite chaos but
not the best start to what will be the most significant social
change since Medicare.
Finally, in July 2014, WA commenced two different versions
in trial sites, and both have progressed steadily. The positive
impact on people’s lives, through being able to access funding
to meet their needs and achieve their goals, has been great
to see. We have waited in anticipation to learn what would
be happening beyond July 2016 and finally we have heard.
WA will have the trial sites expanded starting in October for
the NDIS WA model and from January 2017 for the NDIA
model. More detail is included in our regular NDIS update
article on pg 17. Whilst the final design is still undetermined,
progress is imminent.
MSWA staff will again be making contact with our Members
prior to each site expansion so that we can make sure you
know all about eligibility, what can be accessed and how
to co-design your funding plan. We have a dedicated NDIS
team to help streamline enquiries and provide relevant
information and support for our Members, and people with
other neurological conditions.
Our Bunbury services hub construction is making great
progress and is very exciting for everyone in the region,
Members and staff alike. We are looking forward to having
the purpose designed physiotherapy gym and other areas
available after so many years of squeezing into spaces and
making do. Office space and consulting rooms will provide a
base in the area, for our expanding staff helping us grow our
services and supports.
But wait, there’s more! We have now identified a suitable block
of land in the northern suburbs where we will be building a
services’ hub and additional high support accommodation
units. This will enable us to better support Members in the
area as the urban sprawl sees our numbers grow and prepare
for the expansion of the NDIS when it comes. We also have
our plans for more high support accommodation in both
Shenton Park and Albany.
We are very privileged here at MSWA to be in the position
to build our own facilities and expand our footprint. I haven’t
said lucky as it really has been through ongoing hard work,
our highly successful raffles and Mega Home Lotteries and
various events, along with sound financial management that
allows us this success. It really is rewarding to work for such
a great organisation; one where we can dream and then
create our own reality!
The 2015 Member Survey results have been summarised in
this edition on pg 8. Great results overall which is all very
pleasing and serves as positive feedback for staff.
We hope you enjoy this edition of the Bulletin; the
survey indicates most Members read the Bulletin and enjoy
the content.
The flu season will be upon us soon and yearly vaccinations
are recommended. If you are unsure, contact your GP, MS
Nurse or neurologist for advice.
Please remember if you need any advice regarding
managing any aspects of your MS, or you want
specific information, don’t hesitate to give the Member
Services team a call on 9365 4840 or email us at
Get-In-Touch@mswa.org.au
Protect yourselves and others
Annual flu vaccination for everyone six months of age and
older, is recommended as the first step in protecting against
the flu. It reduces the chances of catching and transmitting
the flu. This is especially important for people at risk of
complications arising from influenza; and those in close
contact with at risk people.
Influenza is highly contagious and spread through coughing
or sneezing virus droplets into the air. Others breathe them
in and become infected. It’s important to remember that
touching contaminated surfaces (including hands) and then
touching your mouth, nose or eyes can also lead to infection.
You can minimise the spread of the virus during flu season
by practicing good household and personal hygiene; avoiding
close contact with others if you or they are ill; and covering
your mouth and nose when coughing or sneezing.
The bad news:
1. Influenza viruses can survive an hour or more in enclosed
environments, which means contaminated respiratory
secretions can be picked up even without someone
coughing or sneezing near us.
2. Even before we show symptoms, we can be shedding the
flu viruses, infecting others around us.
3. Influenza viruses are characterised by constant evolution;
this means there can be a new threat every year.
The good news – you can protect yourself and others by
practicing good cough and sneeze etiquette by:
• turning away from other people;
• covering your mouth and nose with a tissue or your sleeve;
• using disposable tissues rather than a handkerchief;
• putting used tissues into the nearest bin; and
• washing your hands or using alcohol hand rub as soon as
possible afterwards.
Hand washing is the single most effective way of killing
the flu virus and limits the spread of the flu and other
respiratory infections.
Wash your hands with soap and water or alcohol-based
product (gels, rinses, foams) that don’t require water:
• after coughing, sneezing or blowing your nose;
• after being in contact with someone who has a cold or flu;
• before touching your eyes, nose or mouth; and
• before preparing food and eating.
Stop the spread in your household:
Flu viruses can survive more than eight hours on hard
surfaces. You should regularly clean surfaces that are
frequently touched such as door handles and benches.
Flu viruses can be inactivated and removed with normal
household detergents. Keep personal items such as towels,
bedding and toothbrushes separate. Don’t share cutlery and
crockery, food or drinks.
6 Winter 2016 The MS Society of Western Australia The MS Society of Western Australia Winter 2016 7

2015 Member Services
Survey Results
Sue Shapland, General Manager Member Services
We thank you for your feedback!
Once again we had a fantastic response rate to the annual
survey with great feedback and results; so thank you to
everyone who responded! As with last year, I have summarised
the major points and results and included some feedback
comments. Whilst the results are excellent and heartening for
staff we also recognise that we are not perfect and we must
always strive to continue deliver quality services and supports
for our Members and clients.
The Board, CEO and Management review the results each
year and they help inform some of our program development.
Q: Are you always treated with care and respect by staff
when you contact the Society? (724 responses)
5
(1%)
Yes
No
Here are some demographics:
The 2015 Survey was sent out to 2,373 Members in
mid-January 2016. Members were offered an online electronic
option; only four people took up this offer.
We received 790 responses; a return rate of 33%!
All Members who included their contact details for a follow-up
were contacted by a relevant health team member.
Q: Overall, how would you rate the services MSWA is
providing you? (742 responses)
10
(1.5%)
Satisfied
Dissatisfied
Region
Metro 550 (71%) Country 223 (29%).
Members’ working status:
70 not working (62%) 290 working (38%).
Q: Are you seeking work?
Yes 29 6%
No 421 94%
Do you read our Bulletin magazine?
744 (96%) said yes.
Do you receive our monthly Vitality e-newsletter?
444 (60%) said yes.
The top 10 responses to “Which MS symptoms/
problems, if any, do you most experience?” were:
Fatigue 569 77%
Heat intolerance 510 69%
Balance 476 64%
Muscle weakness 395 53%
Weak legs 395 53%
Numbness 331 44%
Pins & needles 298 40%
Incontinence; bladder/bowel 286 38%
Pain 282 38%
Muscle stiffness 282 38%
Some comments from Members
“A great service – I am so glad I live in WA.”
“After being diagnosed I was so happy and impressed to see
the MS nurse. There was terrific communication between
neurologist and all associated staff. It all happened quite
quickly. Thank you!”
“Everyone does a great job and always make you welcome; I
always feel important every time I go. They all need a pat on
the back.”
“Have accessed a lot in the past. Couldn’t have survived
without it. It’s always there if needed. Thank you!”
“Have had occasions when I have spoken to a nurse at the
centre. I had been phoned back to see how I am going and
if I need any more assistance. I have found all staff at Wilson
to be very caring and cannot thank them enough for all their
support and care.”
“Have had very little to do with the Society. The newly
diagnosed seminar was excellent, only reason I am still
paying the annual membership fee.”
“Having been involved with the MS Society for just under a
year, I am very happy and grateful for the services I
have received.”
“Having my first massage this month. No outreach
available here.”
“Having lived in the Eastern States, the support provided by
MSWA is 500% more. Thank you.”
719
(99%)
2014 RESULTS
Yes 721 (99%)
No 4 (1%)
732
(98.5%)
2014 RESULTS
Satisfied 726 (98%)
Dissatisfied 14 (2%)
390 (51%) of respondents had accessed Member Services
programs or support in 2015.
Physiotherapy and massage services were ranked highest in the
request for more services with 23 and 22 responses respectively.
“We made limited use of the Society in 2015, but were
extremely satisfied with the help/grant provided to put
air-conditioning in our home.”
Physiotherapy and massage were listed as the services that
most people would like but don’t have access to, with 41 and
39 responses respectively.
Ages of respondents
Members’ Gender
250
200
150
100
50
0
114
182
215
183
2 4 32
Under 18-24 25-34 35-44 45-54 55-64 65-74
18Yrs
54
75Yrs
+
Male 161 (21%)
Female
624 (79%)
0 100 200 300 400 500 600 700
Do you want to receive the Bulletin online?
Want monthly information updates?
Register your email address today to start receiving our
monthly Vitality e-newsletter and the Bulletin magazine online.
Just email bhavna.jagtiani@mswa.org.au or call 6454 3114
and let us know your current email address.
8 Winter 2016 The MS Society of Western Australia The MS Society of Western Australia Winter 2016 9

Round-up of research
and other items of interest
Sue Shapland RN, BN
The first two overviews were provided by Sandra Connolly,
MSWA Community Nurse.
Can quitting smoking after MS diagnosis improve
outcomes?
According to a Swedish study,
conducted in September 2015,
it does appear that modifying
this risk factor, by quitting
smoking after diagnosis, is
worthwhile. In fact, this study
may be the first evidence that
quitting smoking may slow
progression to secondary
progressive MS (SPMS).
The study included 728 people with MS, in the Genes and
Environment in MS study in Sweden, who smoked at diagnosis.
332 of these, called continuers, continued to smoke at least
one cigarette per day after diagnosis. 118 were people who
had stopped smoking within one year of diagnosis. 278
people were not included in the final evaluation because they
were classed as intermittent smokers.
Findings
216 people converted to SPMS during the study time. The
time to conversion to SPMS, increased by 4.7%, for each year
people continued to smoke following diagnosis. Continuers
reached SPMS faster (median age 48), compared to quitters
(median age 56).
Comment
This adds to already existing evidence, that smoking can
speed up MS progression. Quitting can delay the conversion
from RRMS to SPMS.
Reference: Ramanuyan. R., Hillert, J., et al. 2015. Effect of
Smoking Cessation on Multiple Sclerosis Prognosis. JAMA
Neurol September 2015 1-7. Epub.
Australian discovery of MOG antibody marker as
determinant of treatment in children with MS
Myelin oligodendrocyte glycoprotein (MOG) is a structural
protein that makes up part of the insulating layer (myelin)
around neurons (nerve cells). An antibody which attacks MOG
(MOG antibody) can occur, which contributes to demyelination
in MS and other demyelinating conditions.
MS Research Australia funded
research in 2015, looking at
MS-like immune conditions in
children. The study carried out
by Dr Fabienne Brilot-Turville and
Professor Russell Dale from the
children’s hospital at Westmead,
resulted in identification of this
antibody in the blood. They then
tested these groups of children:
• Ten children who tested positive for the MOG antibody
• Nine children who tested negative for the MOG antibody
• A group of children who did not have a demyelinating condition.
Over the course of time, they found that the MOG antibody
positive group had more relapses, more disease progression
and changes on MRI than those negative to the antibody.
This is valuable information because it implies that if earlier
discovery of more aggressive disease progression can be
determined, then choices of treatment can be tailored to the
severity so that more aggressive treatments can be used
in order to suppress the inflammatory processes within the
immune system and slow disease progression.
Reference: Brilot_Turville. A., & Dale, R. 2015 Australian
researchers find marker for disease severity in an MS-related
childhood disease.
From the UK MS Trust Website
Drugs in development:
Anti-LINGO – an experimental
drug, given as an infusion or
subcutaneous injection every
two to four weeks, to promote
remyelination of nerve cells.
It is thought to promote the
development of oligodendrocytes,
the cells which maintain the
myelin coating around nerves.
A protein called LINGO-1, occurring only in the central
nervous system, prevents the development of young cells into
oligodendrocytes. Oligodendrocytes are the myelinating cells
of the central nervous system (CNS).
Anti-LINGO-1 has been found to block the action of LINGO-1,
allowing young cells to mature into oligodendrocytes. This
may restore repair of damaged myelin, offering the potential
for preventing or possibly reversing disability.
In a phase II study of people diagnosed with optic neuritis,
anti-LINGO-1 treatment resulted in a small but significant
improvement in transmission of nerve impulses via the optic
nerve.
No significant side effects have been seen in early clinical
studies.
An additional phase II study is under way, with 419 participants
with RRMS or SPMS taking Avonex (interferon beta 1a) once
a week in combination with different doses of anti-LINGO-1
or placebo by intravenous infusion every four weeks. This
study is due for completion in June 2016.
Ocrelizumab is an experimental drug being tested as a
treatment for RRMS and PPMS; taken as an intravenous
infusion every six months.
Ocrelizumab is a monoclonal antibody, a type of drug
developed to attack specific targets in the immune system.
• In RRMS, ocrelizumab reduced relapse rates by approximately
50% compared to beta interferon
• In PPMS, ocrelizumab reduced 12-week disability progression
by 24% compared to placebo
BIOTIN (MD1003) is in Phase III trials. A highly concentrated
formulation of biotin is under investigation for SPMS and
PPMS; it is taken as a capsule, three times a day.
Also known as vitamin H or coenzyme R, biotin is one of the
B-group vitamins (vitamin B7). It is necessary for cell growth,
the production of fatty acids, and the metabolism of fats and
amino acids, the building blocks of proteins. At the cellular
level, it activates enzymes involved in energy production and
synthesis of myelin.
MD1003 is a highly-concentrated formulation of biotin. The
doses being used in clinical trials correspond to 10,000 times
the recommended daily intake of biotin.
A small pilot study has provided initial evidence that high
doses of biotin might have an impact on disability and
progression. A phase III clinical trial showed some evidence
of a small improvement in disability.
Preliminary results of a phase III study were reported at a
scientific meeting. Investigators recruited 144 people with
SPMS or PPMS who were having increasing difficulty with
walking and leg weakness.
No significant side effects have been reported so far.
The effect of rhythmic-cued
motor imagery on walking,
fatigue and quality of life in
people with multiple sclerosis:
A randomised controlled trial
Motor imagery (MI) is a technique
where somebody thinks about
moving their body in a certain
way without actually moving; a technique commonly
used by athletes to rehearse movements and skills to
improve performance.
This study investigated the use of MI in people with MS,
combined with music with a strong beat or metronome, to
see if walking could be improved. 101 participants, in three
test groups received MI training session CDs and were told to
practice for 17 minutes a day, six days a week for four weeks.
continued overleaf
10 Winter 2016 The MS Society of Western Australia The MS Society of Western Australia Winter 2016 11

MS Research Roundup continued
When compared to participants in the control group those in
the MI groups could walk significantly faster and further, as
well as reporting improved fatigue and quality of life.
The study demonstrates that using mental imagery
and practice to a beat could be a safe and effective way
of managing and improving walking difficulties in people
with MS.
Findings:
Rhythmic-cued motor imagery improves walking, fatigue and
quality of life (QoL) in people with MS, with music-cued motor
imagery being more effective.
Seebacher B 1 , Kuisma R 2 , Glynn A 2 , Berger T 3 .
Taste dysfunction in multiple sclerosis
Problems with taste and smell
are thought to be extremely
rare symptoms in MS. As
they are interconnected it
can be difficult to study them
individually.
In this study researchers
investigated taste in people
with MS to try and determine
how common and severe problems are, if MS only affected
particular types of taste and if problems with taste could be
matched with the locations of brain lesions.
73 people with MS were matched, for age, gender ethnicity
and education level, with 73 controls. Testing included sweet,
salty, bitter and sour elements with participants asked to
identify the taste and how strong it was.
Findings
This study demonstrated that more people with MS could
have problems with taste than previously thought.
Of the participants with MS, 15% had difficulty identifying
the bitter taste, 22% the sour taste, 25% the sweet taste and
32% the salty taste. Those participants who had more trouble
identifying tastes also had a larger volume of lesions as seen
on MRI brain scans.
The authors highlighted the importance of being able to
taste. If you can’t taste food properly you could potentially
eat something unsafe and you may not enjoy your food if
it doesn’t taste ‘right’. This could potentially lead to people
cutting out certain foods which could lead to malnutrition, a
common condition that occurs when the diet does not contain
the right amount or balance of nutrients for health.
Doty RL, Tourbier IA, Pham DLet al.
Journal of MS Care
An Exploratory Investigation of Social Stigma and
Concealment in Patients with Multiple Sclerosis
The researchers conducted a
preliminary investigation into
dimensions of stigma and their
relation to disease concealment
in a sample of American adults
living with multiple sclerosis.
Fifty-three adults with MS, aged
23-71 years, completed an online
survey assessing anticipated,
internalised, and isolation stigma, as well as concealment.
The researchers identified that as MS symptoms may not
be visible to others, particularly early in RRMS, people may
try to conceal their disease. Concealment may prevent
discrimination but can also be stressful, with negative
consequences for physical health and disease progression.
Concealment can also undermine opportunities for social
support and increase depressive symptoms.
Findings
Many adults living with MS may be concerned they will
be the target of social stigma because of their condition.
These concerns are associated with disease concealment.
More research is needed to investigate how MS stigma and
concealment may be independent contributors to health in
patients with MS.
Cook JE 1 , Germano AL 1 , Stadler G 1
Associations Between Fatigue and Disability, Functional
Mobility, Depression, and Quality of Life in People with
Multiple Sclerosis
Fatigue is a common symptom in people with MS, but its
associations with disability, functional mobility, depression,
and QoL remain unclear. This group aimed to determine the
associations between different levels of fatigue and disability,
functional mobility, depression, and physical and mental QoL
in people with MS.
Eighty-nine participants, with an average length of disease
of 13.6 years and Expanded Disability Status Scale (EDSS)
score of 5.3 were assessed for levels of fatigue.
Hina Garg, PT, MS, PhD; Steffani Bush, BS; Eduard Gappmaier,
PhD, PT
MS Research Australia
Australian Research Unlocks genetic mechanism behind
Vitamin D and its role in MS
New research published in the
Journal of Genes & Immunity
has identified the genetic switch
which shows how immune cells
are controlled by vitamin D and
sheds light on how vitamin D
may be used as a therapy for MS.
The research group at the
Westmead Institute for Medical
Research says it has long been known that vitamin D
deficiency is associated with autoimmune conditions such
as MS but until now researchers did not know the exact
biological mechanism for this association.
The team led by Professor Booth identified three known MS
risk genes, which control vitamin activation, are specific
myeloid cells; a type of immune cell found in the skin and
lymph nodes. This discovery will hopefully help in the
development of more targeted treatments.
Science Daily
Exercising Impacts on Fatigue, Depression, and
Paresthesia in Female Patients with Multiple Sclerosis
A study conducted jointly by researchers at the University of
Basel and Kermashah (Iran) showed that exercise can have a
positive influence on certain MS symptoms. Fifty-four women
with MS, average age of 34, were assigned to one of three
groups: yoga, aquatic exercise or no exercise. Patients who
did yoga and aquatic exercise suffered less from fatigue,
depression and paresthesia reported researchers.
Breakthrough may stop multiple sclerosis in its tracks
An international research team has demonstrated that a new
plant-derived drug can block the progression of an MS-like
illness in animals. The experimental drug is a new approach
to treating autoimmune disorders, and could be another oral
method to treat MS. The plant-based compound is active
even when ingested orally rather than requiring injections.
The research team expects that they may be able to begin
testing the drug in clinical trials in 2018.
Medicine & Science in Sports & Exercise, 2016; 48 (5):
796 DOI:
MS Society Canada
Pilot study takes a first step towards understanding how
bacteria in the gut influence childhood MS
The bacteria living in our gut – our gut’s microbiome – and
our immune system are inextricably linked: the microbiome
can influence the immune system, while the immune system
keeps the microbiome in check. Growing evidence suggests
that in some cases, shifts in the composition or number
of bacteria in the gut can drive a fundamental change in
immune cell behaviour, leading to inflammation and, for some
individuals, MS.
This pilot project was an important first step in establishing a
relationship between the absence of specific bacteria and the
risk of relapse in paediatric MS. Dr Tremlett’s findings tie into
a larger narrative, one where abnormal changes in the gut
microbiome act not only as potential triggers and drivers for
paediatric MS, but for all individuals who are at a higher risk
of developing MS.
Tremlett H et al. (2016) Gut microbiota composition and
relapse risk in paediatric MS: A pilot study. Journal of the
Neurological Sciences. 363: 153-157.
Read more at:
mswa.org.au/
researchupdate
12 Winter 2016 The MS Society of Western Australia The MS Society of Western Australia Winter 2016 13

Swallowing: Everyone’s doing it.
But no one is talking about Swallowing it! Day
Jamaica Grantis, MSWA Speech Pathologist
Campaign Kit
Calcium,
Vitamin D and MS
Amber Rose, MSWA Volunteer & Student Dietitian
The average Australian swallows 900 times a day. That’s
around three times an hour during sleep, once per minute
while awake and even more during meals. It’s something every
Australian is doing. But very few of us are talking about it.
Most of us are unaware how difficulty with swallowing
can be frightening and even life threatening. So this year
on Wednesday, 11 May 2016, Speech Pathology Australia
launched Australia’s first Swallowing Awareness Day.
Swallowing Awareness Day 2016 was an opportunity to bring
attention to swallowing disorders and to connect people
with speech pathologists, the professionals who can help.
Speech pathologists assess and treat people with Dysphagia
(difficulty swallowing) – pronounced ‘dis-fay-juh’.
It is estimated around one million Australians have difficulty
with swallowing. Swallowing disorders remain largely
invisible, poorly understood by the general community, and
rarely addressed in government policy.
Swallowing problems can mean food, drinks or saliva gets
into the lungs (aspiration), and this can cause lung infections
(pneumonia). Severe swallowing complications can lead to
death, while other swallowing complications can lead to poor
nutrition, dehydration, health complications, and social isolation.
Australians with undiagnosed difficulties are frequently
referred to other health practitioners — often for expensive
and invasive investigations — when a speech pathologist
could readily manage the problem.
Thermomix Competition
For those with a Thermomix, it really stands out on its own
in terms of kitchen appliances. It is a multifunction kitchen
appliance that reduces cooking time, effort and cost. The
Thermomix performs the functions of 12 different appliances
from finely chopping onions and vegetables, to gently stirring
casseroles and curries, to whipping up a pavlova. It is ideal
for busy parents who are time poor, and for those who find
cooking and meal prep difficult due to other limitations.
Thermomix is running a raffle through their distribution
network. The raffle closes mid-June. They have offered all
proceeds to the MS Society for the purchase and gifting of a
Thermomix to a Member. Depending on the amount raised,
there may be more than one Thermomix to be gifted.
awareness day
Wednesday 11 May 2016
Jamaica Grantis, MSWA Speech Pathologist said,
“A swallowing problem can occur at any stage of life.
Swallowing is a skill developed from infancy.”
Around 15-30 percent of people aged 65 years and over
living in the community have a swallowing difficulty, with that
figure rising to over 50 percent for older Australians living in a
nursing home. And after falls, choking is the second biggest
killer of nursing home residents.
Almost half of everyone who has had a stroke will have a
swallowing problem, 69 percent of people with Parkinson’s
disease will have swallowing difficulties, as will 25 percent of
patients with multiple sclerosis.
Swallowing Awareness Day is an opportunity for all of us to
learn more about swallowing difficulties and how they impact
on the lives of our friends, neighbours and our wider community.
For more information or to discuss any concerns you can
ring Jamaica Grantis on (08) 9365 4888.
If you would like the chance
to win a Thermomix, please
write and tell us, in 50 words
or less, why you think you
should be a winner. If you
cannot write, please call OT
on 9365 4888 and tell us in
your own words, and we will
write it down for you.
Don’t forget to include your name and contact details.
Address your submission to Sandra Wallace or submit by
email to sandra.wallace@mswa.org.au
Entries close Firday, 26 August 2016.
What is calcium?
You probably already know that our bones and teeth are made
of a mineral called calcium. But did you know that calcium
is also classified as an earth metal? It’s pretty amazing to
think that our skeletons are made of metal! Our bones, though
we think of them as hard and rigid, are always turning over,
reshaping and rebuilding as we grow older – from birth through
to old age. This means that calcium is an essential nutrient for
humans and we need to consume it in our daily diet (in the
right amounts!) to keep ourselves in the best health.
Why is it extra important to me?
Not getting enough calcium can put you at risk of developing
osteoporosis. Osteoporosis makes our bones weak and
increases the risk of fractures and broken bones from
falls. Unfortunately, people with MS are at increased risk of
developing osteoporosis due to:
• side effects from medications, which can affect the
absorption of calcium;
• being unable to be physically active due to fatigue and/or
immobility, as our bones need to be subjected to regular
weight-bearing activities every day to stay as strong as
possible; and
• needing to avoid heat and the sun, because vitamin D is
also important for calcium absorption and bone health, and
most of the vitamin D our body needs is made by the action
of sunlight on our skin.
What foods contain calcium?
Dairy foods including milk, cheese and yoghurt are all good
sources of calcium. Non-dairy sources of calcium include fish
with edible bones such as tinned sardines and salmon, firm
tofu, legumes, almonds, brazil nuts, fortified soy products,
and leafy greens like broccoli, kale and bok choy.
How much do I need?
Osteoporosis Australia recommends that most people have
three to five serves of calcium-rich foods per day in order
to meet their body’s needs. Most people need 1,000 mg of
calcium per day, which increases to 1,300 mg of calcium per
day once you are over the age of 50. A serve of calcium-rich
food could be:
• One cup (250ml) of reduced fat milk = 520mg of calcium
• Two slices (40g) of reduced fat cheese = 418mg of calcium
• One tub (200g) of low-fat natural yoghurt = 488mg of calcium
• Half a cup of firm tofu = 416 mg of calcium
• Sardines canned in water, no added salt, drained = 486mg
of calcium
• One cup (250ml) of low fat fortified soy milk = 367mg
of calcium
If you think that you are not getting enough calcium through
your diet alone, it is best to speak to your doctor about your
concerns before taking supplements.
Cooking with calcium
Try it! Smoked Salmon, Rocket & Ricotta Linguine (Serves 4)
• 250g linguine pasta or spaghetti
• 250g Australian reduced-fat fresh ricotta, crumbled
• 100g smoked salmon, torn into bite sized pieces
• 100g rocket leaves
• ½ cup basil leaves, roughly chopped
• 2 spring onions, finely sliced
• ½ teaspoon finely grated lemon rind
• 2 tablespoons lemon juice
• 2 teaspoons olive oil
• Freshly ground black pepper, to taste
• 1 /3 cup shaved Australian parmesan, for serving
1. Cook linguine according to packet directions or until
tender. Drain and return to pasta pot with a small amount
of pasta water.
2. Stir in ricotta, salmon, rocket, basil, spring onions, lemon
rind and juice, oil and pepper.
3. Divide between bowls and serve with shaved parmesan.
Tip: You could add 300g of sliced smoked chicken in place of
smoked salmon.
Nutrients per Serve:
Energy 1614 kJ (386 calories) Protein 23g
Total Fat 11.9g Saturated Fat 5.5g
Carbohydrate 45g
Sugars 2g
Dietary Fibre 3g
Sodium 647mg
Calcium 297mg
Iron 1mg
Recipe Credit:
Dairy Australia Good Health Recipe Book II (available online)
Article Text Credits:
Osteoporosis Australia
Dietitians Association of Australia
Croxton et al 2015. “Food and Nutrition Throughout Life”.
Allen & Unwin: NSW, Australia.
14 Winter 2016 The MS Society of Western Australia The MS Society of Western Australia Winter 2016 15

Reducing the risk of falls
Sandra Wallace, Manager MSWA OT Department
NDIS Update
Nigel Carey, NDIS Business Development Manager
The statistics on falls is not too great. Up to 75% of people
with MS report balance problems and 60% reported a fall in a
six-month period. When we add age group to the falls data we
learn that one in three people over the age of 65 experience a
fall at home every year! The good news is that most falls can
be prevented.
As a health team, our MSWA experience is that people
generally do not like to admit to having falls and do not
consider a near miss, or sliding gracefully to the floor, as a
fall. There is also a group of Members who report not having
falls but have heightened anxiety around the potential of a fall.
We can group risk factors into biological, behavioural and
environmental risks.
Biological risk factors: Walking and balance is only part of
the biological risk picture. Fatigue, heat intolerance, visual
changes, reduced sensation in feet, cognition changes (ways
the brain processes information), continence urgency, and
medications with various problematic side effects can have
equally significant effect. Symptoms need to have good
management strategies.
Behavioural risk factors: Muscles become deconditioned
with decreased activity, resulting in loss of muscle tone,
weakness and/or poor posture. Fear of falling can be positive
when it increases care taken but can also be negative when
it leads to reduction in or withdrawal from activity. Activity is
essential in maintaining overall wellbeing.
Environmental risk factors: Typically, we need to consider
trip hazards such as obstacles on the floor, wet and slippery
floors, poor lighting and uneven floor surfaces. Footwear is
important; loose shoes are a trip hazard. Assess and make
the necessary changes.
Falls can result in serious injury. Managing falls involves
reviewing each of the risk factors and putting strategies in
place where needed. MS Society staff have some good falls
risk assessments to target effective strategies.
If you are having falls or near misses, or are gracefully
sliding to the floor, I encourage you to speak with an
OT or physiotherapist. Strategies can be discussed to
reduce your risk of a fall that may well result in injury
or harm.
New Staff - Occupational Therapy
Hi, I’m Jess and I have recently joined the Occupational
Therapy team at the MS Society of WA. Having previously
worked as an OT in hospital settings and within the
community, I am excited to be joining the wonderful team
at MSWA and to have the opportunity to work within my
local community. My most recent role has been working
at the NDIS, Perth Hills trial site and I am looking forward
to being able to integrate the knowledge I learned to help
achieve the most effective outcomes for our Members.
I am based at the Beechboro Lodge and can be contacted
on 0428 070 045. I look forward to meeting you all in the
near future.
There have been some exciting new developments in the
National Disability Insurance Scheme (NDIS) since our
last Bulletin.
As you may know, the NDIS is a Federal and State funded
program to support people with a disability that affects their
ability to take part in everyday activities. It supports people
living with all types of disability including MS and a wide range
of neurological conditions including Huntington’s, Stroke,
Parkinson’s, Motor Neurone Disease and acquired Brain Injury.
As you may be aware, the NDIS trials are currently operating
in the Perth Hills (Shires of Mundaring, Kalamunda and
Swan), the Lower South West (Busselton and surrounds) and
the Cockburn-Kwinana areas.
Finally, we have had some news regarding the further
rollout of the trial sites in WA! From 1 October the WA NDIS
will be expanded to include the Armadale, Murray and
Serpentine-Jarrahdale areas. Further expansion will then
occur from January 2017 to include Bayswater, Bassendean,
Chittering, Toodyay, York and Northam.
These expanded trial sites will prepare the ground for the
final rollout of the NDIS throughout WA from 1 July 2017. The
Commonwealth and State Governments will now work closely
together on the details of this State rollout and the final NDIS
model is expected to be agreed on later this year.
This is being done in partnership with people with disability,
carers and service providers. This consultation process will
allow all stakeholders to meaningfully consider the results and
lessons learned from the existing trials sites which vary slightly.
Next month we will be communicating with all Members and
clients who live in the new Armadale, Murray and Serpentine
trial sites and making them aware that they will soon become
potentially eligible for the NDIS.
We will also be hosting information sessions to clarify
entitlements and outline the opportunity to access funding for
a wider range of supports and services.
The benefits include:
• Supports to assist with daily living. For example, with
personal care, home help and shopping
• Support for aids and equipment, vehicle and home
modifications and assistive technologies
• Support to help with social and community participation.
For example, support to enjoy more local and family events
and also support for your partner or carer.
Over the past month, our team has been talking with a wide
range of Members and clients who are already in the process
of applying to the NDIS. It is clear that some confusion and
misunderstandings remain about the scheme and that people
are looking for guidance about their entitlements.
Our experience has been that the earlier MSWA is involved
in this process providing information and support, the more
successful and all-embracing the final application is. For
example, it has proved very useful to involve MSWA prior to the
planning meeting itself. We can then work together with you to
map out holistically the kind of supports that will enhance your
overall quality of life. This will enable you to maximise your
entitlements at the actual planning meeting with NDIS.
In summary you will know very clearly what your entitlements
are and what you can ask for.
Incidentally a key focus of the NDIS is on ‘early intervention’
where obtaining access for early supports can potentially
significantly reduce the impact of disability on you and your
life. It could enable you to continue working full time if relevant
supports (eg fatigue management) are in place. Do remember
to include this, if relevant, in your plans.
Keeping in contact with the team
We are committed to making it easier for you to contact us
to ensure you are gaining maximum benefit from the NDIS.
MSWA has established a dedicated team, phone number,
email and website; details are as follows:
Phone: 1800 287 367
Email: ndisenquiries@mswa.org.au
Visit: mswa.org.au/NDIS_services
We have also increased the number of Client Relationship
Coordinators to ensure a smoother and easier customer
pathway for you.
Our dedicated team is in place to take you from learning
about the scheme through the initial planning stages and
then to implementation.
Our contact details are as follows:
Mark Douglas: Operations Manager
Email: mark.douglas@mswa.org.au
Phone: (08) 9365 4824
Christine Richards: Client Relationship Coordinator
Email: christine.richards@mswa.org.au
Phone: (08) 9365 4867
16 Winter 2016 The MS Society of Western Australia The MS Society of Western Australia Winter 2016 17

MSWA Peer Support Groups
Sarah Lorrimar, Health Education and Peer Support Coordinator
Peer support groups provide an opportunity for people to
come together and share their experiences and concerns. In
a support group, people are able to talk to others who truly
understand what they are going through, whether it be people
living with MS, their carers, or friends and family.
For people living with MS, peer support groups provide
a wonderful opportunity to connect with others, better
understand their diagnosis and make positive changes to
manage symptoms and live well with MS. By listening to the
stories of others who have been through similar experiences,
you can be reassured and/or develop your own approach to
dealing with the challenges that can be brought about by MS.
Support groups seek to provide a comfortable and
understanding environment which encourages people to open
up and speak about their concerns and feelings. By giving
and receiving advice, members of a support group can better
understand MS and the different ways in which it can impact
people’s lives.
As well as providing support, peer groups are a great place to
connect with others and create new friendships. By reducing
feelings of isolation and loneliness, support groups often
empower people to be proactive in improving their health and
wellbeing. They are also a great source of new information on
things such as treatment and research updates.
At MSWA we have a number of existing peer support groups,
some facilitated by MSWA staff and others which are
organised by our Members living with MS. See below some
information about some of our existing peer support groups:
Carer Support groups
Our Carer Support groups are regular support groups
connecting carers of people living with MS. The groups are
facilitated by Senior Social Welfare Officer, Irene Willis and
Counsellor, Karen Brown. Meeting once a month, the three
groups provide an opportunity for carers to connect with
others for practical and emotional support. The response
to these groups has been so great that currently all spots
are filled until next year; however please let us know if this
interests you!
muMS group
The muMS Group is a support group for women with MS who
are already mothers of young children and/or are pregnant.
Providing a shared space to talk about motherhood and MS,
the group is facilitated by Counsellors, Liesl Murdoch and
Jean Hudson. The muMS group is an opportunity for women
to discuss their concerns and feelings, learn new information
related to pregnancy and parenting whilst living with MS and
to enjoy some time away from the parenting role.
Men with MS
The Men with MS group currently run a series of educational
sessions for men living with MS which focus on a variety of
topics. This monthly support group provides men living with
MS a chance to connect, share experiences and learn useful
information to assist them to live well with MS. The group is
facilitated by Counsellor, Simon Rolph, with specialist guest
speakers.
In addition to the groups run by MSWA staff members, there
are peer support groups which are facilitated by Members
with MS. Currently there are two regional groups, which meet
in Geraldton and Manjimup, and a third group which meets
in the Perth metro area. At MSWA, we are always eager to
expand the MS peer support network and see the formation
of new groups throughout WA.
If you are interested in starting up a peer support group
or would like further information on an existing group,
please contact Sarah Lorrimar on 9365 4858 or email
sarah.lorrimar@mswa.org.au
Feature group: MS Coffee Catch Up
‘MS Coffee Catch Up’ is one of the peer support groups
organised by Members living with MS. This peer support
group started out many years ago, as just a few ladies
meeting up for coffee. Angelica Franz and Susie Butcher
organised a regular meet up, to follow their attendance at the
MSWA-run fatigue management course. This soon grew
larger with invites extended to more and more Members they
became aware of.
These days, the group has expanded to almost 70 Members
coming together from various locations in the Northern
suburbs through to Fremantle and Kalamunda. The group is
diverse, with Members from their early 20s through to their
60s and all ages in between. ‘MS Coffee Catch Up’ meets
up once a month on a Friday or Saturday at different cafes
around Perth. Each meeting will usually see around 6-12
Members attend.
Some members of the
‘MS Coffee Catch Up’ meeting
at Lakeview Café in Kingsley
Photo (bottom left going
clockwise): Angelica, Valerie,
Pam, Helen, Jodie, Susie,
Katherine, Jill, Kim, Narelle,
Eileen and Angelika
“It’s a relaxed environment where there’s great support. MS
will be discussed for a brief time at the meetings but mostly
‘Coffee Catch Up’ is just a nice way to meet with others who
understand things like what it really means to suffer from
fatigue” says Angelica Franz, ‘MS Coffee Catch Up’ attendee.
For those who are a little nervous to meet up for the first time,
Angelica Franz and Helen Loder who are the main facilitators
of the group, are happy to meet for a coffee one on one prior
to joining the bigger group.
The group has a Facebook page, which is used to inform
Members about upcoming meetings as well as a platform to
upload information from the MS Society. The Facebook page
is also used to post things of interest such as MS research
updates, photos and inspiring quotes.
18 Winter 2016 The MS Society of Western Australia The MS Society of Western Australia Winter 2016 19

MS is a family matter –
an article on family resilience
Monique Chas, MSWA Counsellor
“Life is not about how fast you run or how high you climb
but how well you bounce”
Vivian Komori
Resilience or ‘bouncing back’ can be generally defined as the
ability to return to optimum functioning after a big life-altering
event such as an illness, a birth or a death. It is a dynamic
process which generally involves a whole family system.
A common misapprehension is that resilient people are free
from distressing emotions or thoughts, remaining optimistic
in most or all situations. To the contrary, resilient individuals
have, through time, developed coping techniques that allow
them to effectively navigate around or through crisis.
Indeed, adapting to new sets of circumstances doesn’t
happen by miracle. It requires a re-adjustment of all parties
– immediate family, spouse, children, extended family,
workplace and social networks – to deal with ongoing
changes. It tests our communication skills, our patience, our
beliefs, and we might start to question the meaning of it all.
With MS, coping and adapting can happen again and again
and again, as symptoms change, often daily. The inability to
precisely predict the course of MS brings uncertainty to the
whole family. The challenges presented by life with MS are
accentuated as individuals may struggle to manage important
social roles such as careers, parenting and leisure activities.
So how do we cope, individually and as a familial group in the
face of adversity?
Especially during times of stress, it is increasingly important to
have open lines of honest communication. In a crisis situation,
a family may go through a variety of emotional responses as it
handles the chaos or grief.
Sharing and talking about problems are necessary for the
overall wellbeing of the family and its individual members,
allowing each individual to cope in their own way and at their
own pace.
Resilience won’t make your problems go away — but
resilience can give you the ability to see past them, find
enjoyment in life and better handle stress.
• Stay connected or get more connected: Building strong,
positive relationships with loved ones and friends can
provide you with needed support and acceptance in both
good times and bad. Establish other important connections
with all other social networks such as work colleagues.
Resilience is the ability to roll with the punches. When
stress, adversity or trauma strikes, you still experience
anger, grief and pain, but you’re able to keep functioning
— both physically and psychologically. However, resilience
isn’t about toughing it out, being stoic or going it alone.
In fact, being able to reach out to others for support is a
key component of being resilient. Learning to harness all
outside supports is a great coping skill.
• Make every day meaningful: Do something that gives
you a sense of accomplishment and purpose every day.
Set realistic goals to help you look toward the future
with meaning, while being present in the moment with
mindfulness. What are the values which keep you going?
What is meaningful for your family?
• Learn from experience: Think of how you’ve coped with
hardships in the past. Consider the skills and strategies that
helped you through rough times. When you have resilience,
you harness your inner strength: what are your strengths?
What are your family’s strengths and patterns of coping?
• Remain hopeful: You can’t change the past, but you can
look toward a future with an increased sense of hope and
calm. Accepting and even anticipating change makes it
easier to adapt and view new challenges with less anxiety.
• Take care of yourself: Tend to your own needs and feelings.
Participate in activities you enjoy. Include physical activity
in your daily routine. Get plenty of sleep. Eat a healthy diet.
Practice stress management and mindfulness techniques.
• Be proactive: Ignoring stress rarely works; it can leave
us feeling unsupported, isolated and a burden on others.
Instead, figure out what could be done differently if that is
needed. Although it can take time to recover from a major
setback, traumatic event or loss, explore other choices or
options with flexibility.
• Increase healthy communication: Sometimes family members
are afraid to talk about the issues involved in a crisis situation,
as they feel discussion might make matters worse.
Many families have ‘filters’ on their communication styles.
They might filter out whichever feelings don’t quite fit such
as anger, resentment, joy, and concern with unwanted news.
This filtering, and the silence it creates, can block the natural
process to recover from a crisis.
Good communication helps members adapt to change.
Throughout this process, clear and open communication joins
members together as they share their reactions and concerns.
If emotional responses are not expressed, an individual or the
family may not reach complete acceptance of the situation.
In conclusion, people with MS develop resilience through
psychological adaptation, social connection, life meaning,
planning ahead and physical wellness. Interventions, such as
counselling, can address both individual and familial factors
that support resilience and wellbeing, to promote “living well”.
If you think you might benefit from taking the time to work
things out at a deeper level, consider counselling with an MS
professional counsellor. With guidance, you and your family
could attain a more adaptable and peaceful outlook on life.
References:
The Mayo Clinic.
Bostrom and Nilsagard, Journal of Clinical Nursing, 2016
Patterson, J, Understanding family resilience.
Journal of Clinical Psychology
Silverman, et al., Dept. of Rehabilitation Medicine, 2016
20 Winter 2016 The MS Society of Western Australia The MS Society of Western Australia Winter 2016 21

Insuring your
Mobility Scooter
Sandra Wallace, Manager MSWA OT Department
Equipment Matters
Sandra Wallace, Manager MSWA OT Department
Unfortunately scooter theft is on the rise. Whilst many thefts
occur from the owner’s home, other places include shopping
centres. So vigilance is needed at all times.
Many scooter owners do not consider the safety of their
scooter, especially if they will be away from it for only a short
time. Theft can occur in as little as 20 seconds, but taking
additional steps to secure your scooter may prevent a very
inconvenient theft.
Many of our Members have had their scooters funded through
grants, and whilst sympathetic to the injustice of theft, there is
no obligation on the funding body to replace a stolen scooter.
Scooter owners are advised to take additional measures to
secure their scooter.
1. Do not keep the key or any valuables in the scooter basket.
2. Invest in a quality chain, u-lock or padlock to secure the
scooter.
3. At home, if you are unable to store your scooter indoors,
ensure the scooter is not visible from the road and secure
it to an anchor point.
Rome
wasn’t seen
in a day
Fold, Pack, Travel
1300 622 633
www.scootersAus.com.au
4. When out and about, secure the scooter to a bike rack
or lamp post when not using it, and remove the keys and
all valuables.
In the past, insurance was not always considered necessary,
but it is an important consideration now. Insurance companies
will vary in their quotes, and it depends on the age of the
owner, the suburb they live in and the value of the scooter
you want to have covered. It costs nothing to get a quote, so
phone around and find out what the costs may be. I called
the RAC, gave some particulars and was quoted $101 for full
cover for 12 months.
If you have a Home and Contents insurance policy,
discuss your needs with your insurer. Most policies
include personal effects. You can have additional cover
under your existing policy when you provide the details
and value of the scooter. Claims will usually have an
excess fee.
WH20241/MSWA
Occupational Therapy is a lot about equipment. We know
the importance of having the right equipment for the need
and for that equipment to be used correctly. Over time that
piece of equipment may need maintenance and/or to be
checked for safety. You can be involved in checking your own
equipment. Here are some commonly used items that should
be checked routinely.
Personal alarms – if you have
a personal alarm, activate the
alarm at least once a month
to check that it is working
properly. This helps to build
your confidence in the
system so, when needed,
you are familiar with what
will happen. Ask yourself
these questions:
• Is there a backup battery that needs replacing?
• Are all the phone numbers you have in the alarm, or at a
monitoring centre, still current?
• Is there a key in your key lock box?
Shower chairs – including shower stools and commode chairs
• If there is rust, the chair
needs replacing. Rust is not
usually obvious because it
is occurring under the seat
where you can’t see it. Lean
the chair over and look for
signs of rust under the seat.
• Check the plastic of the seat
is in good condition; broken
areas can pinch your skin.
Tears in padded seats mean
they need replacing.
• Check the rubber stoppers on the feet are in good condition
as they dry out over time.
• Wash away soap residue to keep your chair looking clean.
• The wheels of commode chairs should be smooth and easy
to push. They can become clogged with soap residue and
hair so keep them clean.
• Ensure the brakes are in good working order.
• Never use plastic garden chairs in the shower as the plastic
becomes brittle and may suddenly give way, with potential
to cause injury.
Slings – used for hoisting; either standing or full hoists
• Ensure all stitching is intact.
Never do your own ‘mending’ as
it will not comply with Australian
Standards. Repairs can be done
through the supplier.
• Ensure there are no holes or
frays and the straps are fully
intact. A small tear quickly gets
bigger and could lead to injury.
Repairs can be done through
the supplier.
• Never write on the sling fabric or straps as the marker can
impair the fabric.
• Check the description label writing is legible. If it is fading,
the supplier can replace the label. Under Australian
Standards all slings must be clearly labelled.
As a general rule, whoever owns the equipment is
responsible for its servicing or replacement. If you have
any queries about your equipment you should contact
the person who issued it; or you can contact MSWA OTs
on 9365 4888.
22 Winter 2016 The MS Society of Western Australia The MS Society of Western Australia Winter 2016 23

That’s life
with Narelle
On The Buses
Ros Harman
Narelle Taylor
My star sign is Cancer. I read in a magazine that it means that
I like cooking. It’s quite right, I do, I’ve always been a ‘foodie’.
When I went to Sydney recently for my Dad’s 90th birthday,
there were eight of us in the house.
I admired the way we were all cooked for and were fed on
time. I also liked the way the fridge was kept in perfect order,
not like some fridges I’ve been responsible for, with a food
item left, forgotten about, or growing something that looked
like it could cure penicillin. My sister did a great job.
The MS Society here in Wilson also arranged to have someone
come to the house to shower me each day while I was staying
here in Sydney. Therefore I was able to function as usual, and
my being clean meant that everyone else was comfortable
too. I was very grateful. I had a pleasant break and my father
was, admirably, his usual humble self, enjoying whatever was
happening.
My mother’s sister, who is ninety eight and a half, sat beside
me at the birthday luncheon and had party guests taking turns
to come and talk to me. Aunty Audrey was, as she always
has been, very considerate of others and when that meant
my desires were met – all the better. She is an excellent
conversationalist herself anyway. I had a great time and hope
Dad enjoyed his luncheon too.
It was wonderful to be in Sydney for the last days of summer.
My sister took us for coffee with friends at the spectacular
Long Reef Golf Club on the northern beaches. We sat and
talked overlooking the sea and the headland.
Returning to Perth was something that had to be done. My
life in an aged care facility is not for egomaniacs – the other
residents unanimously had not even noticed my absence and
thus were not really riveted to hear about what I had done,
seen and heard about in Sydney, and what a great job the
MS Society here in WA had done in arranging home-help on
my behalf.
Ignored back here where I live, I decided I can continue to
be the rock-star in my own life. The staff here at the nursing
home where I live, though busy, love my stories. So do my
friends, though there is often a lag between the event and
the telling. That suits me. I can polish my lines in my head as
I wait for our next encounter when they will invariably ask,
“And how have you been?”
My four-year-old granddaughter is also learning the art of
conversation. She arrived to see me the next day and while
admiring the ensemble she had chosen and was wearing
(very important), I enquired about what she’d been doing.
Apparently she’d been watching football, she replied.
“Do you like football?”, I asked.
“Yes”. She replied, “The boys play with the ball and if they
break the rules the vampire blows the whistle.”
Well, who wouldn’t like watching that?
Afterwards we all went to a table in the garden and she drew
a lovely rainbow. Thank you, Claire.
Her Mum and I then spoke in horror of how children at a local
day-care centre had been kidnapped and abused. One can’t
but think of how fortunate we are – even me, engaged in a
daily battle with multiple sclerosis.
“Quick!” said my sister as we rushed down the driveway and
around the corner to the bus stop. She pulled elastic loops
from her school bag and handed them out to me and my other
sisters. When we were hidden from the house by trees she
helped each one of us to roll the bands of our school skirts up
to shorten them. She was the oldest and in high school, and
she knew how important it was to be fashionable.
The old orange school bus arrived at 7:30 each morning.
We lived on a farm 50 kilometres from town, so we spent
almost as much time on the bus each day as we did at school.
Catching the bus was an education in itself, and not just in
fashion ettiquette. As the bus rattled along the gravel road we
made friends and enemies, and had our first romances. We
sorted out hierarchies, choosing seats according to popularity
and seniority in our little universe. As we bounced along the
country roads the older kids organised games. We played
elastics in the aisle and sometimes sang songs in rounds.
Once we turned onto the bitumen road and started picking up
the ‘town kids’ we settled into our seats and read books or
talked quietly. On the way home in the afternoons we stopped
at the country store at the railway siding a short way from
our farm, and picked up bread and the mail for Mum. If I was
lucky I would have a few cents of my own to buy a little white
paper bag of lollies. Five cents went a long way in those days.
I continued to catch buses after we moved into town, and
then again when I moved to the city to go to university. But
that all ended in the early 80s when I got a car. Since then
I have always had a car, with hand controls when my legs
became weak from MS, and later a wheelchair hoist on
the roof. I can go most places with my car and my manual
wheelchair, although I am hampered frequently by the lack
of a parking space wide enough for my wheelchair, or by an
inaccessible building.
Recently I decided to try public transport again. Elizabeth
Quay had just opened with a lot of hoopla and fanfare so I
decided to find out what all the fuss was about. I was quite
nervous about this adventure wondering if I would find myself
stuck on the side of a road somewhere with no way to get
home, so I was very glad that this first time I would have a
friend with me.
First of all I looked at the Transperth website where I found a
friendly invitation to ‘Plan My Journey’ which I did, discovering
I could catch a bus from near my house and then get the ferry
across to Elizabeth Quay.
I had heard that not all buses are wheelchair accessible, but no
matter how hard I looked I could not work out whether the bus
I would be catching was able to take my wheelchair or not. In
the end I rang their inquiry number and was transferred from
person to person until I found someone who could assure me
that the bus I would be catching could take a wheelchair.
In the end I had no reason to be anxious. Our journey went
swimmingly. The bus pulled up to the stop just around the
corner from my house and the driver, with the flick of a switch,
lowered the bus to the curb. A small ramp flipped across to
bridge the gap so I could roll in easily. My friend and I paid
our fares and enjoyed the short trip to the ferry. Boarding the
ferry was easy, with a gently sloping ramp to the entrance,
and I felt like Queen Elizabeth herself on her Royal Barge as
we crossed the river to her Quay!
I admit I was fairly underwhelmed by the development itself,
but to be fair it was a quiet day and maybe the ugly unfinished
building site next door didn’t help. A plate of sweet potato
chips with rosemary aioli from a food kiosk improved the
ambience of the place.
We wandered around for a while testing pathways and
in general all seemed to be pretty accessible. Even the
cobblestones weren’t too bumpy. I checked out the toilets (of
course) and gave them a tick of approval. After I posed for
a photo under the arch we caught the ferry back across the
river and a bus back home.
I have avoided the city in recent years, finding it too daunting
with all the traffic, changes to the roads and difficulty finding
parking, but having made the trip by public transport with a
companion, I was feeling a lot more confident. When a friend
invited me for lunch one day I decided to leave my car at
home and found myself with the whole city before me ready
to explore. My world has grown just a little bit bigger.
24 Winter 2016 The MS Society of Western Australia
The MS Society of Western Australia Winter 2016 25

Volunteering News
Dawn Burke, Volunteer Coordinator
The law of infinite potentiality
Dr Andrew Ong
Sister Marie Moriarty.
Hello to all my vollies and the many other readers of this Bulletin.
Autumn is here and the leaves are falling, as well as the much
needed rain. By the time this reaches you, it will be winter and
hopefully more rain would have followed to fill up our dams.
I was kept busy organising our Annual Volunteers Luncheon
which is celebrated during Volunteers Week, Monday, 9
May through to Sunday, 15 May. I was so looking forward to
catching up with all of you and enjoying the great company
and fabulous food.
The Metropolitan Luncheon was again held at the Burswood
on Swan, such a beautiful riverside location with a superb
view. Bunbury celebrated at the Back Beach Café, also with
amazing views of the ocean. Unfortunately, I will have to share
these special days in the next Bulletin, as crossover times for
printing clash. Of course this will give you all something to look
forward to in the spring edition. Watch this space!
I would like to share some news from the larger volunteering
world. Volunteering WA, who are the State’s peak body for
volunteering organisations, have just welcomed on board a
new CEO, Tina Williams. I would like to extend an MS Society
of WA welcome to Tina and thank Volunteering WA for all
the work they do and the assistance they provide to us with
advertising for volunteer vacancies, training, information and
ongoing support. Organisations such as this are an invaluable
resource. If any of you are looking at volunteering with MSWA,
or any other organisation, jump onto the website and see
what’s on offer. We, like many other organisations, appreciate
and value any time given.
A new free online hub has just commenced to assist all Not for
Profit organisations with any legal questions. They will provide
assistance for organisations to support and manage volunteers.
This service has been provided through Justice Connect.
Connecting to the world through the internet is certainly the
way to go. For those of us who aren’t so internet friendly, or
avoid computers at any cost, we would benefit from sharpening
up our IT skills to keep up with the big World Wide Web.
Some more trivia for all of you volunteers out there. Did you
know that WA has approximately 174,700 volunteers? This
equates to one volunteer for every fifteen people in WA. What
an amazing ratio and a great effort from our volunteers!
I would like to take this opportunity to mention two very special
volunteers, Sister Marie Moriarty and Marie Harris. Now please
don’t go thinking I don’t think all our volunteers aren’t special,
because you are. However, these two are more so, for one
particular reason. These two volunteers are ‘Long Timers’ and
have been volunteering with MSWA for over 25 years.
I don’t know about you, but I think this is an amazing
achievement. How fortunate we are to have volunteers
supporting us for so long. Very few people stay in one work
place for more than five years these days. This shows you
what a great bunch of folks we are to hang around with. I
would like to share a bit of information with you all about Marie
and Sister Marie.
Sister Marie has been volunteering at our Wilson Centre
throughout the years and her roles have changed over
time. I do believe in days gone by she would make toasted
sandwiches on a Friday for all the staff. Times were a bit
quieter then compared to now. Today Sister Marie is regularly
seen in Outreach and also helping out with card making with
our Members in the Occupational Therapy area. Sister Marie
is quite a character and well known to all the Wilson staff
and Members.
Marie Harris has been volunteering with our Bunbury Outreach
group every Wednesday for many years and assists with
events down that way and also participates in them when
and where possible. Marie collects the group’s weekly Lotto
monies in the hopes of winning the big one. I know at the
end of the year they walk away with envelopes filled with the
winnings accumulated during the year. According to Marie,
this year the winning pickings have been very slim.
Sister Marie and Marie have made a great contribution to the
MS Society and we are truly grateful for all their valuable time
and support for the staff and Members over the years. I wish
to personally thank you both for your ongoing commitment and
contribution and hope to see you both still floating around our
centres in years to come.
One more event that has been is the Annual Moore River
Members’ Camp, Monday, 16 May until Thursday, 19 May. I am
extremely privileged to attend these camps and love helping
our Members have some much needed time out, socialisation
and of course loads of fun. I have two volunteers again helping
out on this camp and having the extra hands on deck helps
everything to run more smoothly and gives us weary staff a bit
of a break. I will keep you up to date with the camp gossip in
the next Bulletin edition. I wonder what dress-up delights we
will get up to! One can only imagine.
I trust this Bulletin edition finds you all well and fighting
fit. I always enjoy catching up with those of you who are
around our Centres. Take care and bye for now.
“Between the lowest and the highest degree of spiritual
and bodily perfection, there is an almost infinite number of
intermediate degrees. The succession of degrees comprises
the universal chain. It unites all beings, ties together all
worlds, embraces all the spheres” Charles Bonnet, 1764.
Like the acorn that grows into a giant oak tree, we also
are genetically programmed to grow into adulthood. But as
human beings we have this added responsibility bestowed
upon us to acquire an education so that we can fulfil our
particular purpose and obligation to become the best possible
person that we can. Unlike that strong oak tree, our privileged
position in the universal chain of being is to continue to grow
our mindset, appreciate our body and improve ourselves until
we have realised our own true, authentic and unique self
when we have become a complete human being.
Once we realise and come to believe that this transformation
is possible and that we possess the ability to create and
become whatever it is that our heart desires, our potential is
infinite and limitless.
Providence has given us this opportunity to live at the highest
level of an infinite number of intermediate degrees of bodily
perfection, and such a privileged position propels us into
a realm of spiritual magic. It is a realm which knows no
boundaries, whose power is magnificent in its invincibility.
The false self you know so well, however, wears a social mask
that each day seeks external approval. This is the false self
that wants to control you and is sustained by power because
it lives in fear of providence. Your true, new self on the other
hand is internal and has an inner locus of control.
When you are in touch with your true self you will be immune
to criticism and fearless in all your life’s endeavours. There will
be no desire to control or manipulate other people, no wish
to justify yourself or indeed to be seen by others to always be
politically correct. Instead you will be content because you
are polite and will have done what you feel is the right thing.
You will have cast aside your social mask and no longer seek
to thrive only on the approval of others.
As your true authentic self you will have that infinite potential
to be creative. You will magnetise people. You will have
good luck and experience circumstances that will support
all your worthwhile desires. You will feel a sense of bonding
and synergy with people because your strength is built on
the greatest power in the universe, that of respect for your
privileged position in the universal chain. Then you will have
found unconditional love.
“Accept the children the way we accept trees—with gratitude,
because they are a blessing—but do not have expectations
or desires. You don’t expect trees to change, you love them
as they are” Isabel Allende.
Tips for a healthy lifestyle
Dr Andrew Ong
Take anti-oxidants. Ensure that your diet contains
high fibre. No sugar. Low fat. No salt. Always exercise
regularly. Maintain a positive mental attitude. Have
a hobby. Maintain goals. Enter a relationship. Take
enzymes, co-enzymes Q10, selenium, calcium. Never
smoke. Drink alcohol in moderation. Be judicious in
your use of drugs. Rest often. Take a holiday. Ensure
that you have some quality time to spend with the one
you love. Find some personal space. Eat two ginseng
leaves each day. Always have positive expectations.
Be moderate with sunshine. Drink lots of water.
And laugh.
26 Winter 2016 The MS Society of Western Australia The MS Society of Western Australia Winter 2016 27

Member in Focus –
The day my life changed
Peta Thompson
Community
Fundraisers
May 1 2006 my life came shattering down with one phone
call from the ophthalmologist. I had been seeing him due to
losing sight in my eye. He advised my MRI scan results were
back and he had found a lesion on my brain which would
indicate MS and I would now need a neurologist.
My neurologist, who I still see today and has been a great
support to me, explained what living with MS would be like.
Although he didn’t explain it this way, my interpretation is
that multiple sclerosis is the toughest, longest and most
unpredictable game I will ever play.
Although I hope to get through life with the least amount of
lesions on my brain and spinal cord, therefore decreasing
neurological symptoms which can include paralysis and
decreased brain function, the rules of the game are set by
condition and they can change at a moment’s notice and
without warning. Multiple sclerosis is a fierce and unforgiving
opponent. Its most powerful weapon is its unpredictability.
After two years with this dark cloud sitting over my head I
decided that I would break this game up into components of
ten years and my objective would be not to let this disease
define me. So with this in mind I decided to get a tattoo that
said “Que Sera Sera”. I wanted to remind myself that whatever
will be, will be. The future is not ours to see, and from hereon
in, to stop waiting for it to rain and enjoy the sunshine now!
The first day of May 2016 has arrived and I now ponder on
the past decade and this game of MS I have played. I have
changed medications five times, each type bringing its own
problems ranging from bruises, migraines, chills, sweats, and
muscle aches.
Finally, the breakthrough came with a simple tablet, only to
find out after using it for a few years that it has caused a
handful of people to die from an unrelated to MS brain disease.
So back on to the injections with those tiresome symptoms.
I have experienced a couple of relapses and felt a range of
symptoms of varying degrees, and in each case the feeling
is silent and claustrophobic. But the world keeps turning and
people keep going about their daily business, however, for me
I’m stopped in my tracks by my opponent – multiple sclerosis.
Some weird sensation takes over my body known as pins and
needles, but so intense that I’m forced to the floor, thrashing
around holding on to my arm trying to find a comfortable
position, all the while with tears streaming down my face. On
other occasions I’m reminded in subtler ways that MS is there
and will never leave me. With a restriction to my chest or an
arm, to warn me that my illness will always have hold of me.
This is known as an MS hug but there is nothing affectionate
about it.
Going to a sports event or the theatre always presents a
challenge, like walking down those steep steps without a
railing or someone’s hand to help. I fear my brain won’t talk
to my feet in time, as the stadium starts to spin. My condition
has not improved over the past decade, which is just another
reminder of this cruel game of MS that I am playing.
Despite all the reminders MS throws at me during this
relentless game, I know I have defeated it in the first round! I
am not defined by MS, which makes me the winner. This first
decade has given me so much more than MS. I have stayed
active and kept my symptoms to a minimum, but even more
than this it has given me a wonderful and supportive husband
who loves me unconditionally and together we have made
two very beautiful little people, who are my world and make
me smile every day.
Coincidentally May also happened to be the ‘Step Up for MS’
ten-year anniversary, an event which I have had a strong
connection to throughout this decade. I used this day to
volunteer at the event and gave myself permission to pat
myself on the back for the decade gone, and put some
strategies together for the next battle.
I can’t be sure that I will come out of the next decade
on top or what MS will throw at me, but I will be ready.
Que Sera Sera.
Dining for a cause
A passionate fundraiser, Vera Reeves was diagnosed with
MS eight years ago. On 30 April, Vera held a ‘Sunset Soiree’
fundraiser at the Chestnut Grove Winery in Manjimup where
guests were treated to fine food and music.
The event was a huge success and Vera was over the moon
with outcome of the night.
She said, “We were lucky to have our local chefs producing
a magnificent array of foods from produce kindly donated by
our local growers. Guests were able to relax, enjoy live music
and have fun while raising money at the same time.
“We couldn’t be happier with the outcome of the evening
and feel privileged to be a part of a community who are
so generous. We raised over $20,000 for MSWA and had a
wonderful time doing so.”
Vera (middle) with her friends and
fellow organisers.
Peter Todd (middle) with his support crew.
Cycling for a cause
A cycling enthusiast, Peter Dodd participated in the Delirium
24-hour cycle race in Busselton on 16 - 17 April in a bid to
raise funds for people living with MS in Western Australia.
MS is a cause close to his heart with a close friend living with
the condition.
Peter finished third in the solo male category, having cycled
a total distance of 757.5km in 24 hours. An incredible effort!
Peter said, “I managed to get through the best part of 24
hours on a bike with a lot of help from a fantastic support
team as well as overwhelming encouragement from a lot of
people who dropped in to cheer me on or were following the
live race results.
“I would also like to thank my teammates Steve and Giles,
who were the brains trust behind this crazy idea!
Peter raised over $3,200 from his ride. He added, “Thank you
so much to those who donated – I can assure you that your
support got me through some pretty dark times towards the
end of the ride.”
Thank you to all our community fundraisers for your
support in raising money for people living with MS in
Western Australia. If you would like to hold a community
fundraiser, please get in touch with our Events Team on
6454 3131 or at events@mswa.org.au
28 Winter 2016 The MS Society of Western Australia The MS Society of Western Australia Winter 2016 29

Fundraising
Round Up
Bridges Night Ride
for MS
More than 200 participants, volunteers and event crew lit up
Centenary Park in Wilson on 8 April for the Perth Integrated
Health Cycling Group Bridges Night Ride for MS.
Participants chose between the 40km and 70km categories
and were encouraged to decorate their bikes in outrageous
lights as they cycled around the Swan and Canning Rivers.
Thanks to fundraising efforts, the event raised over $12,800 for
people living with MS and many other neurological conditions.
Special mention goes to our highest individual fundraiser Anna
Luca from No MSing Around who raised $1,500 and Nick and
Lisa Uyen from our highest fundraising team - Team Papa,
who raised $1,845.
Keen to put pedal to the metal? Mark your diaries
for Saturday, 8 April when we will be holding our next
Bridges Night Ride for MS with the addition of a new
90km category for the brave!
Bunbury Swim for MS
Bunbury took on the swimming challenge on 20 March for the
annual Swim for MS Bunbury.
Over the past three years, the Bunbury swim has raised
$118,515 and had 288 participants making a splash in the
pool. This year, we had 58 swimmers representing nine teams.
The overall winning team were the Sinking Seven with 282
laps swum. And proving that age is just a number was MSWA
volunteer, Marie Harris who participated in her third Swim for
MS at 92 years of age!
The event raised $11,144 for people living with MS in the
South West with the Wet Whittons coming out on top as the
highest fundraising team on $3,705.
Congratulations to everyone involved in the event.
We look forward to making a bigger splash next year!
The Wet Whittons.
The Amazing Hewson Family!
Sue Shapland
The Sinking Seven.
Julia is well known to MSWA for her role as part of a trio of
champion fundraisers over many years; Triple J – Jaci Ward,
Jacqui Willis and Julia. These three ladies with MS raised
large amounts of funds that benefitted Margaret Doody
Respite House at City Beach.
Julia’s influence has obviously now rubbed off on her family who
once again participated in the annual Rotary Team Challenge.
And once again they were first over the line at Swan View!
Julia’s daughter-in-law Rebecca and her friend Lara Borwick
walked from Bakers Hill to Swan View, 50km in 8 hours
exactly! Step-son Jaimen, friend Brett Hutchins and eightyear-old
grandson Marley walked the 22km from Chidlow to
Swan View closely behind Rebecca and Lara. Ten-year-old
Grandson Banjo walked from Chidlow to Parkerville, 15km.
Julia cheered them along their way at Stoneville wearing red
and waving her MS signs. Naturally they were all exhausted,
had many blisters and no doubt lost toenails.
Julia is understandably very proud of them all for
participating and for helping those with MS in WA. The
Rotary Team Challenge rasied over $46,000 for people
living with MS and many other neurological conditions in WA.
Team No MSing Around.
Step Up for MS
Celebrating the Shadforth Financial Group Step Up for MS’
10th anniversary was a great milestone for MSWA.
Over the last decade, over eight million steps have been
climbed by over the 7,836 participants! Even more impressive
is the over $1.3 million in net proceeds the event has raised
for Western Australians living with MS and many other
neurological conditions – a phenomenal result!
This year’s event once again recorded some amazing stories.
Ram Rajagopalan was our highest individual fundraiser
with over $6,100 raised and also one of our best dressed
participants. He climbed the 1,103 steps at Central Park
dressed as a bride!
The 46-year-old has been living with MS for the last six years.
Paralysed on the left side of his body for a year and a half, he
couldn’t climb stairs but trained hard to get better and has
been participating in Step Up for MS for the last two years.
He said, “I do it for myself and fundraise because I want to
find a cure and help support people who aren’t doing as well
as me.”
West Coast Eagles star and MSWA Ambassador, Josh Kennedy,
was once again our race starter and got our fastest male
and female participants off to a flying start. Anthony Sciano
and Fran Flockton completed the challenge with timings of
6min 59secs and 9mins 26secs respectively.
We’d like to thank our many event sponsors and
supporters for their support over the years, we couldn’t
have done it without you.
30 Winter 2016 The MS Society of Western Australia The MS Society of Western Australia Winter 2016 31

Coming together
to raise awareness
Millions of reasons
to celebrate
On Wednesday, 25 May, we recognised World MS Day. World
MS Day brings the global MS community together to share
stories and raise awareness about the condition.
MSWA had a huge presence throughout the Perth CBD. We
had an excellent turn out of volunteers at our street appeal
shaking their donation tins and handing out MS stickers. Also
on hand lending support were Elmo, the Cookie Monster,
Fireman Sam, and of course, MSWA mascot Bosko. Red
morph suit men could also be spotted in and around the city
encouraging people to ‘Stand Up to MS’.
This year’s street appeal also saw the inclusion of a bike
challenge which had various Perth celebrities and MS Members
riding stationary bikes together to raise awareness and funds
on the day. Thank you to Ric Charlesworth, Jayde Taylor, Sophie
Budd, Vince & Robert Garreffa, Tom Bailey, Renae Wauhop,
Christine Stanton and Troy Cook who joined with MSWA
Ambassador Josh Kennedy to participate in the challenge.
Also, our thanks go to MSWA Members and supporters
Shannon Tori, Samantha & James Putigny, Amanda Papalia,
Anna Luca, Liz Tropiano and Michael & Sarah Ruggiero who
were very generous in giving up their time.
In keeping with our promotional video, ‘This Bike Has MS’,
we had the actual bike used in the video on hand for people
to ride – well at least attempt to ride. It’s buckled wheels,
unpredictable gears, unreliable brakes and an off-balance
frame made it an almost impossible task.
The Nova 93.7 Casanovas were out and about at various
locations throughout the day handing out free red Krispy Kreme
doughnuts to recognise World MS Day. While Kingsway City
Shopping Centre, The Shops at Ellenbrook, Bunbury Forum
Shopping Centre and Floreat Forum Shopping Centre also had
different activities set-up to help shoppers learn more about
MS and MSWA.
Almost $7,000 was raised on the day – an amazing
achievement! It was also nice to be featured prominently on
the Channel 7 and Channel 10 evening news.
Thank you to all our volunteers and staff who came along
to help out on the day!
Not many 23-year-olds can say they own their own home,
let alone one worth $1.6 million. But for Lauren Jones, this is
now a reality after winning the Grand Prize in the MS Mega
Home Lottery. The good news kept coming for Lauren with
the Grand Prize, for the first time, including $500,000 in cash.
Our very first multi-millionaire winner in the history of the
lottery, the physiotherapist said she was teary and lost for
words when she found out she was now the owner of a fully
furnished, custom-designed Webb and Brown-Neaves home
in Hillarys.
MS is an issue close to Lauren’s heart with her dad, Jamie,
diagnosed six years ago. She said, “He had some symptoms
at the start but he’s actually symptom-free and still working
thanks to medications.”
Another winner with half a million reasons to celebrate is
80-year-old Janice Anderson. The Early Bird Cash Prize
winner walked away with $500,000 cash.
She said, “I honestly never expected to win anything ever. I
just think it’s such a wonderful thing to help people with MS.”
All our lucky winners shared the $5 million prize pool
of 8,338 prizes including prestige vehicles, overseas
holidays and home electronics. The money raised from
the MS Mega Home Lottery allows us to continue to
provide support and services to people with multiple
sclerosis and many other neurological conditions and
their families and carers.
32 Winter 2016 The MS Society of Western Australia The MS Society of Western Australia Winter 2016 33

South West
Regional Round Up
Treendale Gardens Accommodation and Respite (Australind)
Accommodation Units
The residents are enthusiastically embracing the vegetable
garden and have had a successful spring and summer crop.
The cook helped harvest the produce which was then used
both in the main kitchen and by the residents in their own
units. The re-vamped area has been so successful and
popular that we now have interest in creating a fern garden in
one of our other courtyards.
Everyone enjoyed a gorgeous meal to celebrate Easter and
we had a combined BBQ, with staff and respite clients on
ANZAC Day, which everyone enjoyed immensely.
Residential Respite
We have had a number of Members come to stay with us in
respite; many have stayed before and re-booked again during
the year. Our staff always look forward to seeing familiar
faces returning, as well as new respite clients. We currently
have vacancies for most of the year. So if you would like to
know more or are already considering respite and would like a
‘holiday’ down in the Bunbury area, please get in touch.
The latest
news from
the South
West
Family/Holiday Unit
We have a three-bedroom self-contained holiday unit available
that is attached to respite. This is available for Members to
come to the South West for a break with their family and
friends. Our friendly staff can assist with personal care in the
morning and the evening if required.
All our Members, family and friends who have stayed in the
holiday unit have enjoyed the relaxing time away. Whilst the
unit was purpose-built for people with a disability, some who
have stayed don’t require any assistance from staff and they
can remain independent during their stay.
For others, knowing that if they were to need some assistance,
staff can be accessed by pressing the call bell provides
reassurance. The unit is stand-alone and there is the freedom
to come and go as you wish; to get out and about and enjoy
this wonderful South West region.
If you wish to enquire or make a booking, please call
Linda or Paula on 9725 9209 Monday to Friday 9am – 4pm.
Artists impression of the Bunbury Services Centre.
Albany Outreach news
Caroline Clark-Smith, Resource Coordinator
Some of our local Members
have just participated in
the Step Up challenge,
wearing pedometers. They
have recorded their steps for
two weeks and some were
very surprised at how far
they actually travelled.
We have also started weekly yoga classes, which has been
great. These are subsidised by MSWA and we have been
given the go ahead to continue. So if you are interested in
doing a four-week session please let me know. If the interest
is high we can keep the program running.
The Albany swim was a huge success so thanks to all those
who swam, volunteered their time and/or donated goods.
It is your generosity and support that made the day such
a great success. Funds raised stay in the area to buy
necessary equipment.
Our Volunteer lunch to say thanks to our wonderful volunteers
went well. This was also supported by MSWA as we couldn’t
attend the Perth one due to distance. We cannot succeed
without our volunteers, so we are grateful for all your help.
We have had several visits recently from MSWA staff, including
Sue Shapland, who provided an overview of the NDIS and
changes to the Aged Care System, some research news and
an update on the MSWA plans for new facilities including high
support accommodation in Albany. Leonie Wellington also
came to visit us to speak on Mindfulness.
New staff –
Occupational Therapy
G’day, I’m Faith and I have
just joined the MSWA
team as an Occupational
Therapist based in Bunbury.
I grew up in Harvey and am
very excited to have finally
returned to the area. I’ve
worked as an OT in Perth
and the Peel region, working
primarily with children and
their families, but have a
passion for working within
the community that I live in
to help those around me achieve greater independence in their
daily activities. I recently took 12 months off to circumnavigate
Australia with my husband on a working holiday, with just a
tent and a 4WD. It was an incredible opportunity to meet and
see a charming array of people and places and also to realise
what a truly amazing place the South West region is to live
and work in.
I look forward to meeting and working with you in
the future.
Hi I’m Heidi and I am
your new OT down in the
South West and am based
in the Busselton Office
(I know you’re all jealous,
right?) I’m originally from
the UK however I can now
claim to have worked as
an OT in Australia longer
than the UK! Yes I have
assimilated. I have spent
all of my career working for
the Health Department so
it’s very exciting to be working for the MS Society in this new
world of NDIS (be gentle with me I’m on a learning curve).
I’ve been fortunate to gain experience in many different
areas of OT and it’s wonderful to be working in the area of
Neuro again.
You can contact me on 9754 2320 at the Busselton Office;
I’m looking forward to getting to know you all.
34 Winter 2016 The MS Society of Western Australia The MS Society of Western Australia Winter 2016 35

My excellent Rottnest
Island adventure
John Wallace
Angie and I have lived in Perth for 13 years and have never
been to Rottnest Island so when the invitation arrived from
Sumit to take part in the MS Carers’ Camp on the island I
jumped at the opportunity.
There was a vacancy at the City Beach Respite House and
although Angie had not been there, we knew that Barry and
Ron often go and always enjoy their time there, so why not
give it a try.
So we went! I dropped Angie off at City Beach on Sunday. It
looked very nice and the staff were very friendly.
On Monday morning I drove to Wilson, where most of the
attendees had gathered, for coffee before Laura and Sumit drove
us to the ferry wharf at Fremantle; we boarded the ferry and
were off. It was a great day for a ferry ride, it was very hot but
the ferry speeding through the water made a nice cooling breeze.
On arrival at Rotto there was no wind so it was very, very
hot – I don’t think I have ever felt quite so hot before. As we
couldn’t move into our cottages until two o’clock, most of us
gathered in the Dome Restaurant to while the time away with
lunch and a few drinks. The pear cider was very nice!
After moving into the cottages, we did our own thing for the
rest of the afternoon; some went exploring, some just relaxed,
some went to the pub, and some went for a cooling swim at
the nearby beach. Then later most of us got together in the
big cottage for pre-dinner drinks before sitting down to enjoy
the great dinner prepared by Rosalie.
The sumptuous breakfast next morning was a combined
effort, Sumit barbecued the sausages and bacon and Rosalie
cooked the eggs and everything else. Afterwards the options
for day two were: a) do your own thing, or b) snorkelling.
I chose the snorkelling. It had been more than 20 years since
I did any snorkelling but it’s like riding a bike, isn’t it? So off
we went on the Island Tour Bus to visit the various snorkelling
spots. Our first stop was Little Salmon Bay.
Sumit and Mary, the experienced snorkeller, gave us warnings
about not going out too far and how to signal if we got into
trouble. The water felt like ice in comparison with the air
temperature, but after a while you get used to it.
So off I went, swimming about, head down looking for fish
and coral. After 10 or 15 minutes I looked up and realised
how far I was from the beach. I suppose I got a bit anxious or
even panicky and somehow managed to suck water down the
snorkel and some of it went into my right lung, which didn’t
help my anxiety. Fortunately Sumit was nearby and checked if
I was okay, and I had to confess that I was in a bit of trouble.
Sumit started to assist me in making it back to the beach
and soon another couple of swimmers joined in the rescue
and eventually dragged me onto the beach. I soon recovered
enough to be able to sit up in the shade of a big rock,
but I must confess again that I had never before felt so
physically weak.
Although I started feeling a bit better after a while, Sumit was
still concerned about my wellbeing and insisted on calling
the ambulance to check me out (where would we be without
mobile phones!) One arrived in about 15 minutes, crewed by
two lady paramedics, who proceeded to check me out and
decided they should take me back to the nursing station as
a precaution.
Once back at the nursing station I was subjected to the usual
barrage of tests, the only test that was not normal for me was
the blood oxygen, which was a bit low, so I was given a bit
of oxygen.
My right lung sounded a bit noisy so they decided to x-ray
my chest and transmit the picture back to Perth where a
specialist could compare it with an x-ray taken some time
ago. Isn’t modern technology amazing!
The result of all these tests was that I was not in any
immediate danger, but apparently occasionally after you get
salt water into a lung there can be a reaction sometime during
the following six hours when your body tries to flush the salt
out and overdoes it and produces so much fluid that you
drown in your own body fluid!
The paramedics were concerned that this could possibly
happen to me on the island or on the ferry back to Perth, so
they decided the safest option was to evacuate me to Fiona
Stanley Hospital via the Royal Flying Doctor Service.
So that’s what happened, a quick ride in the ambulance to
Rottnest Air Strip, a 10 minute flight to Jandakot Airport and
a 10 minute ride in the waiting ambulance to the Emergency
Department at Fiona Stanley Hospital. While all this going on,
Sumit was hovering around making sure I was okay, as if I
was his father.
At the hospital they did more tests to make sure there was
nothing else wrong and decided to keep me in overnight
for observation. In the morning, apart from a slight tickle in
the lung, I was quite okay so they let me go. Fortunately my
son-in-law was able to pick me up from the hospital and take
me back to Freo to get the ferry back to Rottnest Island to
continue the adventure.
I phoned Laura, one of the MS staff looking after us on the
island, to let her know I was coming back and she insisted
on meeting me at the ferry to make sure I could walk to the
cottage. From here on it was back to the original plan.
Needless to say however, there was no more snorkelling! Just
a relaxing afternoon followed by dinner at the Rottnest Island
Hotel and dessert and coffee at the Aristos Fish Restaurant.
Next morning, up early to leave our luggage outside by 8 am
for the ferry transfer and down to Dome for breakfast.
The ferry ride back to Freo was refreshing and we loaded onto
the MS bus to take us back to Wilson to pick up our cars.
One final thing was to pick up Angie from City Beach where
she had been having a lovely time, being waited on hand and
foot and completely spoiled. She can’t wait to go again!
Wilson Outreach news
Nicola Ryan, Outreach Coordinator
Wilson Outreach ‘visits’ New Zealand
As we reported in the Autumn edition of the Bulletin, Wilson
Outreach Members, volunteers and staff are continuing to
travel around the world in 2016!
In February as part of celebrating Waitangi Day we ‘jetted’
to New Zealand for the month! Using the computer to project
onto our large screen, I was able to show beautiful photos of
both the North and South Islands. I had been lucky enough to
cruise them whilst on holidays in January.
We had a few fun craft activities, one of the more popular
ones was making Koru’s with our Members. The photo of the
staff and Members shows the finished product which is a
spiral based on the shape of a new unfurling silver fern frond
and symbolises new life, growth, strength and peace. It is an
integral symbol in Maori art.
Our special visitors were two beautiful Maori ladies who came
and sang to us in their native language. This was so beautiful
to listen to and they even endeavoured to teach us how to
perform the Haka! Everyone enjoyed their visit immensely and
we have been lucky enough to have them come back again to
share stories of their birth place with us.
We are currently in ‘Mexico’ and will share those photos
in the next Bulletin.
Thoughts about the four days:
• The MSWA staff Laura, Sophie, Rosalie and of course Sumit
looked after me as though I was their father (or grandfather).
• I wonder why so few men came along. Many more women
suffer from MS, so I presume there are more male carers,
but there were only three male carers and 10 female carers.
• If you haven’t snorkelled for a long time, practice a bit
before you go too far out!
• When is the next MS Carers’ Camp?
Wilson’s St Patrick’s Day and
Sculptures by the Sea Activities
March came and went with much fanfare. We celebrated
birthdays as always and took our hats off (in this case we all
put green hats on), and celebrated the Irish way!
St Patrick’s Day is one of our favourites at Wilson and this
year was no exception! Giselle ran an ‘Irish Joke Competition’
for both staff and Members which proved to be very popular!
As we all know, there’s never a shortfall of Irish jokes. Our
new kitchen volunteer Danielle took out the prize this year!
We certainly made a very ‘charming’ group when we had our
photo taken together!
March also saw Members going on quite a few outings.
The movie ‘My Big Fat Greek Wedding’ proved very popular
at the cinema and the ‘Sculptures by The Sea’ outing saw
two Wednesday Members, Barry and David, enjoy their time
looking at the amazing transformation of Cottesloe Beach,
now an annual event. Sumit arranged the outing and it’s
available to all Members so keep this in your diary for next
year as it really is worth seeing.
The first four months of the year is certainly a busy
time of year and as always, we the staff, along with our
Members and volunteers, keep enjoying our time here
at Wilson Outreach and look forward to what’s ahead...
watch this space!
36 Winter 2016 The MS Society of Western Australia The MS Society of Western Australia Winter 2016 37

ANZAC Day at Wilson Outreach
Nicola Ryan, Outreach Coordinator
Southside Outreach news
Angie Wallace, MSWA Member
ANZAC Day 2016 certainly came around fast this year. Wilson
Outreach conducted the Society’s second ANZAC Day service
on Thursday, 21 April outside in the garden at the Society’s
head office in Wilson. We were very lucky with the weather
being perfect for the ceremony.
Last year was our inaugural service celebrating the centenary
of the ANZACS leaving Gallipoli. Due to the service being so
successful the decision was made then and there to make it
a yearly event.
Due to the service falling during school holidays this year,
unfortunately no school children were involved. The choir
and the bugler were missing, but that didn’t take away the
importance of our service.
We were honoured to have an ex-serviceman Len Winton
representing the RSL Riverton, to assist in the running of the
service. Len looked magnificent, proudly displaying medals of
his own as well as those of his father and brother. Even though
Len was very quietly spoken, his presence was magnified to
those who were there as he was the vision of what ANZAC
Day represents.
He’s been gone 100 Years
One hundred years ago he left us
Gone off to fight the war
He sailed away from Albany
His last sighting of our shore.
A family left behind him
Hearts swelling out with pride
Their freedom he’d be fighting for
With good mates at his side.
His first fight was with the ocean
Churning guts and gills of green
When at last they made their landfall
It seemed so calm … almost serene
On the dusty shores of Egypt
War still seemed so far away
But the High Command was planning
And he’d be the price they’d pay.
He was drilled and he was trained
By hot morning and balmy night
Then he was loaded on the ship again
The time had come to fight.
The ships stood off Gallipoli
The darkest hour before the dawn
He knew not then, but at the sunrise
A legend would be born.
The jagged cliffs and rugged shoreline
Were still too dark to see
But he had come here to defeat the Turk
Wherever he may be.
Len spoke of those who left Gallipoli that day being so young
and leaving behind mothers, fathers and siblings that they
would never see again. He mentioned the memories haunting
those who did come back and the support that they have
needed over the years. Len read the Ode whilst the flag was
lowered and the wreath was laid. The Last Post was played
and a minute’s silence was honoured.
The service only lasted 20 minutes but the powerful
message behind the time spent honouring our soldiers will
last so much longer. Having staff, volunteers and Members
together reflecting on ANZAC Day has now become one of
those special dates on our calendars here at the MSWA.
The boats had almost landed
When what broke loose was hell
Shells came down and bullets whistled past
And then the first man fell.
The water it was running red
ANZAC blood was in the sand
He kept moving forward with his mates
Heroes...to a man.
He ran across the Turkish sand
Cover almost within his reach
Then a bullet took him in the chest
And he died upon the beach.
The fighting went on around him
Many more men died that day
For him there were no final words
As there wasn’t much to say.
They buried him between two others
One from Sydney, one from Perth
Now he lays eternally
Beneath the Turkish earth.
His spirit made it home though
And watches us still this day
You see he paid a price for freedom
He wants no one else to pay.
So now it’s been One Hundred years
Since he last stepped upon our shore
But this ANZAC’S spirit...it is vigilant
So we can be free forever more
Lest We Forget
Author Unknown
With the cooler weather upon us, we welcomed Rosalie’s
super tasty soups that were being served at Friday’s lunches.
The recent pea and ham was a real winner; thanks Rosalie,
and all your volunteer helpers.
We welcomed new Members to our Friday group – Samantha
(Sam) and Kay; hope you have some fun with us. Sam, by the
way, won our Mother’s Day raffle put together by Jan. Well
done, Sam!
We’ve had an active year so far – chocolates and a quiz for
Valentine’s Day, a ‘visit’ to New Zealand (we wish). One of our
Members, Jerry, had recently actually travelled to NZ and had
a wonderful time. Perhaps Jerry will put together some hints
on travelling with a disability in this beautiful country.
In March we ventured once again to the Rockingham Foreshore
for a morning of games, massage and the obligatory fish and
chips lunch! Only challenges were the heat and getting enough
shade. Also we had an early Easter celebration because of the
Centre being closed on Good Friday.
We find ourselves getting a little bit crowded these days in our
new premises on Fridays – we are growing!
Our CEO Marcus visited and kept us up-to-date with the
latest on the NDIS and MSWA’s very healthy financial status.
We love his enthusiasm and dedication; thanks Marcus!
As part of the history project currently under way the
editor, Greg Brotherson, has asked me to write about the
breakthrough role I played in the negotiations and then the
purchase of a home by the Society in City Beach.
The original home, which was later pulled down (a victim
of its own popularity), was then rebuilt by the Society as a
special-purpose home and renamed Margaret Doody Respite
House, dedicated in memory after Margaret’s untimely
death. The ten-year mortgage was guaranteed by the
Lotteries Commission.
It all started many years ago when the South West Association
for the Physically Handicapped (SWAPH), received funding to
provide an out-of-home respite service in Bunbury.
As there were no respite services for young people with
physical disabilities in Perth, we made use of this Bunbury
Service. Members would be popped on the train in Perth,
assisted off it in Bunbury and transported by volunteers to the
SWAPH respite house for a holiday.
Member Erin’s daughter, Rebecca, completed the recent
‘Step Up for MS’ climb and raised $1,500. What a wonderful
effort! The rest of us are all puffed out just thinking about
those 1,103 steps up to the top of Central Park. Thanks so
much for your hard work!
Thanks also to our physio Sharon for taking part in the
‘Bridges Night Ride for MS’ – 40km on a bike, in the dark,
around the Swan and Canning Rivers! Well done, Sharon.
Members Barry and Ron are once again heading off to
Margaret Doody House Respite at City Beach shortly. Angie’s
first visit to this lovely house in a quiet part of City Beach was
a real success (except for the 40+ degree temperatures that
week). I can’t wait to go again and enjoy the hospitality of
Chris’ wonderful and caring team! If you haven’t been to this
facility before, we highly recommend you do!
Until next time, warm regards from all at Southside.
The acquisition of respite funding for what would
eventually become Margaret Doody Respite House
Gail Palmer
Eventually the State Government removed the SWAPH funding
as they said it was not providing the service to Bunbury
residents, but was mainly being used by Perth people.
The late Patrick McGurk (then chairman of Member Services)
and myself ( then the senior home-visiting nurse), approached
the State Government armed with a report written by an OT
named Debbie Karasinski, confirming our belief that the most
needy group of young people with physical disabilities for
respite were people with multiple sclerosis. We also had our
figures for the use we had made of the Bunbury house.
Having made our argument to purchase and manage
a respite home in Perth, fortunately the Society was
successful in acquiring the necessary funding. We then
bought an old Commonwealth Games Village house in
City Beach, and the rest as they say, will be history.
38 Winter 2016 The MS Society of Western Australia The MS Society of Western Australia Winter 2016 39

We’re fundraising
with
Discover thousands of valuable up
to 50% off and 2-for-1 offers for
many of the best restaurants, arts,
attractions, hotels, travel, shopping
and much, much more!
NEW!
The best
of Bali.
$13 from every member order goes directly to the MS Society of WA.
To reserve your new Entertainment membership please contact us on:
Phone: (08) 6454 3122 | email: harry.singh@mswa.org.au
or go online to: www.mswa.org.au/entertainment
40%
easier to
open
The most preferred and compact
catheter for women.
Why not try today?
SpeediCath Compact Female
• The most preferred catheter
• The most compact catheter for women
• Easy grip handle for more hygenic catheterisation
FREE
Sample
To request a sample please call Coloplast on 1800 653 317
or visit www.coloplast.com.au/compactfemale
The Coloplast logo is a registered trademark of Coloplast A/S. © 2016-02 CON428. All rights reserved Coloplast A/S, 3050 Humlebaek, Denmark.