MSWA Bulletin Magazine Summer 2018

BULLETIN
THE OFFICIAL MAGAZINE OF MSWA mswa.org.au
SUMMER 2018
East Fremantle Football Club riding in the MSWA Ocean Ride in support of Member Noel Johnstone
HEALTH ECONOMIC IMPACT OF MS
ACCURATE NAVIGATION OF THE NDIS
YOUR GRIEF FINGERPRINT
INTERNATIONAL TRAVEL IN A WHEELCHAIR

MSWA’S MAGAZINE FOR PEOPLE LIVING WITH MS
NURSING Our MS nurses are usually the first point of contact after the neurologist’s
diagnosis of MS. We’re committed to providing holistic supports; providing a greater
understanding of what to expect.
Lou Hatter, Manager: 9365 4888 or Community Nurse: 9365 4888
LETTER FROM THE EDITOR
DR GREG BROTHERSON
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 9365 4851
NDIS TEAM 9365 4824
OUTREACH GROUPS
Wilson Outreach (Mon-Thurs): 9365 4830
Beechboro Lodge (Mon, Fri): 9377 7800
Southside Outreach (Fri): 9592 9202
Albany Outreach (Fri): 9841 6651
BUNBURY (WED) HUB
1 Mason Street, Davenport 6454 2800
BUSSELTON OFFICE
1/21 Cammilleri Street 9754 2320
MARGARET DOODY RESPITE HOUSE
Manager, Chris Rush: 9385 9574
FERN RIVER ACCOMMODATION
Manager, Danuta Figurska: 9356 2747
HAMILTON HILL ACCOMMODATION
Manager, Jayne O’Sullivan: 9331 5780
TREENDALE GARDENS RESPITE &
ACCOMMODATION
50 The Boulevard, Australind
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),
Paul Cavanagh, Sue Shapland, Ros Harman,
Libby Cassidy, Caitlin Skinner, Sandra Wallace,
Narelle Taylor, Leonie Wellington,
Rosemarie Dravnieks, 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
MSWA’s staff, advisors, Directors or officers.
PHYSIOTHERAPY Our team 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 you to attain the highest possible level of independence.
Dave Hathorn, Manager: 9365 4837 or Physiotherapy Department: 9365 4834
OCCUPATIONAL THERAPY Occupational Therapists enable Members, and Clients,
to continue their work and other interests for as long as possible through advice, aids and equipment.
Rosemarie Dravnieks, Manager: 9365 4804 or OT Department: 9365 4888
SPEECH PATHOLOGY Our Speech Pathologists provide support by assessing, diagnosing
and creating individualised treatment programs for Members who experience swallowing and/or
communication difficulties. We equip Members with information and strategies to promote better
communication and safe swallowing.
Jamaica Grantis, Manager: 6454 3140
COUNSELLING, PEER SUPPORT & HEALTH EDUCATION
Talking with a Counsellor creates a safe, respectful and confidential environment for you
and those close to you to explore options, create change or gain understanding about your
life. Attending counselling with our tertiary qualified practitioners enables opportunity
for personal growth and exploration in a non-judgemental environment. We have a Peer
Support & Health Education Coordinator who organises peer connection & events and
supports health and wellness education services. She can be contacted on 9365 4858.
To make an appointment please call:
Lisa Papas, Manager: 9365 4836 or Main Counselling line: 9365 4811
SOCIAL WELFARE Social Welfare Officers assist people living with MS and their
families to access services and supports to remain living independently at home.
They specialise in case management, advocacy and sourcing funding options.
They provide information on benefits and entitlements through Centrelink and other
government departments. Monitor NDIS/WANDIS Services.
Kath Knights, Manager: 9365 4835
INDIVIDUAL OPTIONS We provide long-term and time limited in-home supports
including assistance with personal care for people with MS, to help them remain in their
homes. Care and supports are provided through a combination of funding from the
Disability Services, Department of Communities and our own fundraising efforts.
We manage both DSC and NDIS individually funded care packages.
Aileen Ward, Manager: 9365 4851 for more information.
THE NDIS TEAM We can help answer all NDIS questions.
Our experienced team can help determine whether you may be eligible for NDIS support
and assist you with your application. This includes developing an individual plan that
best suits your needs. We support people with all neurological conditions including
MS, Stroke, Parkinson’s Disease, Huntington’s Disease, Acquired Brain Injury and
Motor Neurone Disease, to name a few.
Geoff Hutchinson, Manager NDIS Business Development: 9365 4879
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
DIETITIANS are university-qualified nutrition experts who promote general health and
disease prevention/management through dietary changes. They provide evidence-based
dietary counselling and education, empowering individuals, with practical strategies,
to meet their goals and improve health, wellbeing and independence.
Jamaica Grantis, Manager: 6454 3140
Welcome to your Summer edition of the MSWA Bulletin.
Three announcements recently caught my eye as we
commenced the task of compiling this edition. The first is
that MSWA has recorded another outstanding result for this
financial year, which you will read about in the article by our
CEO, Marcus Stafford. You will also find a précised report on
the 2018 Annual General Meeting which was on 25 October.
There is something very comforting in the knowledge that you
are supported by MSWA, the brightest star when measured
against all the other Australian multiple sclerosis (MS)
societies in the Southern Constellation.
The second announcement of importance is the release of
the Economic Impact of MS report, commissioned by MS
Research Australia and successfully launched by the Prime
Minister, the Hon Scott Morrison MP on 22 August 2018
at Parliament House in Canberra. As an aside, the Prime
Minister’s brother in-law has multiple sclerosis.
Commissioned by MS Research Australia and prepared by
the Menzies Institute for Medical Research at the University
of Tasmania, the executive summary of the Health Economic
Impact of Multiple Sclerosis in Australia 2017 tells us that
while the number of Australians living with MS continues to
rise – now at 25,600, a rise of 20% – this is costing Australia
$1.75 billion; an increase of $0.51 billion since 2010.
INSIDE SUMMER 2018
LETTER FROM THE EDITOR 3-4
FROM THE DESK OF THE CEO 5
A MESSAGE FROM THE GENERAL MANAGER –
MEMBER AND CLIENT SERVICES 6
MEMBER SERVICES CHRISTMAS 2018
CLOSURES AND REDUCED COVER 7
ANNUAL GENERAL MEETING 2018 8-9
MS RESEARCH ROUND UP 10-11
HEALTH ECONOMIC IMPACT OF
MULTIPLE SCLEROSIS IN AUSTRALIA IN 2017 12
OPEN DAY TO HELP WITH NDIS PLANS 13
ACCURATE NAVIGATION IS KEY TO NDIS SUCCESS 14-15
BALI BUDGET ON WHEELS 16-17
COMPUTERISED NUTRITION CHECK-UPS 18
DIETARY FIBRE 19
THE CAVEMAN MIND 20
The detailed cost of the condition ranges from $30,561 for
people with no disability, to $114,813 for people with severe
disability. The more severe forms of the condition continue
to take a heavy toll on those diagnosed including personal
relationships and family.
The good news is that disease modifying treatments (DMTs),
are redirecting the course of the condition, with unemployment
in decline and new strategies reducing the cost of care. There
are now more people with MS still at work than previously.
While the total cost is increasing, people who know about
such matters explain that rising costs are mainly due to an
increase in the number of people living with MS, and the cost
of newer treatments. The average yearly cost for individuals
(both direct and indirect), has increased by less than $10,000
over the past seven years (from $58,652 in 2010 to $68,382
in 2017, or 17%). This is due to a significant reduction in
lost wages (a third of the economic burden), and informal
care costs for people with MS compared to 2010. It will be
interesting to review this cost once the NDIS is fully rolled
out, as more people with MS will have access to the levels of
funding they need for supports and equipment.
Continued over
THERMOREGULATION 22-23
WHAT IS COGNITION? 24
REASONS WHY I MIGHT BE FALLING 25
COGNITION GROUP 25
QUENCHING YOUR THIRST 26
VOICE BANKING 27
MSWA CARERS SUPPORT PROGRAM
CARERS GROUP’S REALITY 28
CELEBRATING CARERS 28
VOLUNTEER NEWS 29
THAT’S LIFE WITH NARELLE 30
HEARTACHE 31
ATTITUDINAL HEALING - SOME NEW-YEAR RESOLUTIONS
32
ACCESS TO THE MUSIC 33
SOUTH WEST REGIONAL NEWS ROUNDUP 34
GREAT SOUTHERN NEWS ROUNDUP 35
YOUR GRIEF FINGERPRINT 21
THE CANNING SHOW, WILSON OUTREACH 35
2 | MSWA BULLETIN SUMMER 2018 MSWA BULLETIN SUMMER 2018 | 3

Photo courtesy MS News Today
The final piece of good news is the meeting of the 34th
Congress of the European Committee for Treatment and
Research in Multiple Sclerosis (ECTRIMS). The attendees
were of rock concert proportions when thousands of
scientists, doctors, pharmaceutical company executives and
others, representing about 100 countries, met in Berlin for
three days to discuss and debate the latest developments in
MS research.
Although certainly impressive, it is not the thousands of
research papers presented by the most brilliant minds in the
world bent on MS research, or the over 80 different meetings,
which is so mind-bendingly impressive (MS News today
4/10). What got me is the unrelenting pressure on the subject
of MS to succeed in unravelling the mystery.
Dr Lisa Melton, Head of Research at MS Research Australia,
who attended this global conference, tells us that it is
impossible to bring you all of the incredible work being
discussed at ECTRIMS, but Drs Klotz, Zamvil, Palace and
Stangel finished the conference with their highlights. They
touched on the progress being made in understanding the
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 or the Bulletin magazine online.
Email damien.hill@mswa.org.au or call 9365 4814
and let us know your current email address.
interactions of immune cells in the brain, the role of the gut in
modulating immune system responses, how new standards
for diagnosis are improving the speed and accuracy at which
people can now find answers when faced with the first
symptoms. There is so much progress being made in MS
research, but numerous steps, large and small, are being
made in the right direction and there is a lot to be excited
about (‘MSRA Wire’, 23/10, 2018).
What is also really inspiring is that MSWA, the brightest
star in the Southern Hemisphere, each year continues
to contribute millions of dollars to this research effort as
part of an Australian family of MS societies, whom with
Multiple Sclerosis Australia (MSA), and Multiple Sclerosis
Research Australia (MSRA) as a collective, have very deep
international roots.
This is a far cry from when the organisation lived on strugglestreet
at the beginning of the millennium, only a handful of
years ago. Today, MSWA has made an amazing transformation
and the achievement is something the Membership can be
very excited about. Thank you to all the people who worked
so hard to achieve this turnaround, and everyone in the
community and government who values and support the work
of MSWA.
On behalf of the Editorial Committee – who also work
hard throughout the year beyond the call of duty to bring
you the latest research information, write articles about
the quality services at your fingertips, the politics of
disability, and to bring you the inside information about
an already very transparent organisation – we thank
you, our readers, for your support. Your contributions
are most welcome and are of comfort to others. Have a
very merry festive season, stay cool and we will return
in the New Year.
From the desk of the CEO
MARCUS STAFFORD
Christmas is just around the corner, and what a year it’s been!
May I take this opportunity to wish all Members a safe and
joyous Christmas and a New Year filled with happiness. We’ve
enjoyed some great success during 2018, and our strong
financial position has allowed our 750 staff to implement
many benefits for our Members and Clients. As the year ends,
we look back briefly to appreciate all we’ve achieved.
I’m pleased to report the Annual General Meeting provided
a great opportunity to share a year of record-breaking
achievements. Our focus on our Member and Client services,
continued investment into neurological research, and delivery
of key facilities across the State, has proven successful. Board
Director and Bulletin Editor, Dr Greg Brotherson provides more
detail later in this edition.
As CEO, I am conscious of our economic and political climate
and I’m pleased to say that all audits covering both financial
and clinical governance scored highly, which is testament
to our staff who successfully embraced growth, without
foregoing quality.
In addition to the empowerment of people with disabilities
and the efficient delivery of services, the National Disability
Insurance Scheme 'marketplace' offers great opportunities
for MSWA to build further on our leadership position,
and to make the world a better place for people with
neurological conditions.
The model that has been embraced by the organisation
places the customer at its heart. MSWA respects the right
of that customer to select services from the marketplace and
relishes the opportunity to stand out as the preferred choice.
The significance of the change from block funding to the
organisation, to direct funding to the individual, should
not be underestimated. In addition to the back office and
infrastructural changes that have been necessary to adopt this
changed way of doing business, staff have at times needed
to shift their focus too. The relentless pursuit of service
provision and increased productivity has been a cornerstone
of the year. It is only the dedication and hard work of our staff
that has made this possible.
It is our intention of course, that the year ahead will continue
to deliver successful results. Our highest fundraising
deliverable, the MSWA Mega Home Lottery, will continue
to provide a strong foundation, with the 2019 campaign
launching in February. Our expanding premier events will
continue to deliver vital fundraising dollars and demonstrate
Western Australia’s commitment to supporting our Members
and Clients.
MSWA Ocean Ride 2018 was another success and saw 1,365
participants raise more than $330,000 breaking records
both in numbers and fundraising. As we turn the page on the
calendar year, we will be launching MSWA’s Albany Ride and
Swim for part of our valued regional community.
Thank you to everyone who has played a part in the delivery of
another successful year including, the good men and women
who have climbed the stairs of Perth's tallest building and
bought our lottery tickets. Our volunteers who have tended
our gardens and risen at unearthly hours to set up our bike
ride. Our volunteer Board of Directors who have given up their
time to shape strategy with the future in mind. Our friends
and partners within both State and Federal governments who
have worked alongside us to ensure that the experience for
people with disabilities is as smooth as possible. Our Members
and Clients who have graciously accepted the changes that
we have had to make. And of course, our staff, without whom,
none of this would have been either possible or achieved.
Merry Christmas.
4 | MSWA BULLETIN SUMMER 2018 MSWA BULLETIN SUMMER 2018 | 5

“With the new day comes new strength and new thoughts.”
Eleanor Roosevelt.
A message from the General Manager –
Member and Client Services
SUE SHAPLAND RN, BN, Cert MS Nursing, MSCN
The National Disability Insurance Scheme (NDIS) is certainly
promising a new day for so many people living with disability.
The day will finally arrive when those living with disability,
will have access to funding to purchase the supports,
interventions, aids and equipment they need; and in a timelier
fashion. For too long, many of our Members and people with
other neurological conditions relied on bits of funding sourced
from various providers to try and get their needs met. Some
were fortunate enough to receive an individual package,
however this couldn’t be adjusted when their needs increased
and the demand for funding for bathroom modifications saw
waitlists grow.
Of course, as with most programs, the NDIS has eligibility
criteria, including the under 65 years of age rule, and other
requirements including proof of functional disability, but
these are essential to help manage the costs long term. As
mentioned previously, the national Scheme when fully rolled
out is expected to cost approximately $23 billion and fund
over 450,000 Australians.
The NDIS is continuing to roll out in WA, and other states,
albeit a bit slower than we would like. The sheer numbers
and logistics pose a challenge, including the annual revision
of all existing plans with many lessons still being learnt in the
process. However, the trials and learning and inevitable errors
along the way, will help us refine the Scheme and make it part
of the usual process in the years ahead.
MSWA has our own NDIS Team here to help our Members
better understand and plan for the NDIS, helping
them get their best NDIS plan. Geoff Hutchinson, Manager
NDIS Business Development, has a great article and update
in this edition.
Research into MS, and trials of new and better treatments,
will continue to bring about a new day for people living with
MS. When I look back to the 80’s when MS was hard to
diagnose, and we had no treatments, the 2000’s when we
had four new treatments with some benefit, to now where
we have 12 treatments with some amazing results; it’s been
quite an incredible evolution. Of course, there’s still so much
more for us to find out including the ultimate prize; a cure.
Once again MSWA is very proud to continue providing
significant funding for the research efforts; we have
committed $3 million this year! This funding includes an
ongoing allocation to The Perron Institute for both MS specific
research projects and neuroplasticity, as well as funds to MS
Research Australia, with an allocation targeting progressive
MS research. We will continue to provide you with research
updates in the Bulletin, the Vitality e-newsletter, on our
website and at various forums.
This year has been another very busy but successful year for
MSWA; we have opened new locations including Mandurah,
Joondalup and Kelmscott, grown our service hours
and supported over 500 people to start their journey with
the NDIS.
Of greatest excitement is the imminent opening of our latest
high-support accommodation and services facility in Butler.
We will have 10 one-bedroom units opening in January and
they look fantastic! Next door will be a wonderful new services
centre with a large physio gym, massage room, consulting
rooms, staff offices and a large meeting room.
Great news for those living in the north metropolitan area. We
would like to thank Lotterywest for a grant to help us fit out
these buildings. 2019 is already shaping up to be another busy
year! We have bought land in Albany where we are planning to
build more high-support accommodation units and a service
centre. We also have the Shenton Park development in the
pipeline for the next two to three years.
I would like to thank the Member and Client services staff
and our volunteers for their continuing hard work throughout
the year.
I also wish all our Members and their families a safe and
happy festive season and hope 2019 is a great year for you
and yours.
Please don’t forget the Member and Clients Services Teams
are here to help; if you need any advice or information
please don’t hesitate to contact us by telephone on
9365 4888 or email Get-in-touch@mswa.org.au
MEMBER SERVICES CHRISTMAS 2018
CLOSURES AND REDUCED COVER
Some of our services will be closed or reduced over the Christmas period whilst others, like Individual Options, will run as usual.
Outreach Group and Respite closures and re-opening are as follows:
Outreach Group Last Day for Member Attendance Re-open date
East side (Beechboro) Outreach Monday, 17 December 2018 Monday, 14 January 2019
Bunbury Outreach Wednesday, 19 December 2018 Wednesday, 16 January 2019
Wilson Outreach Wednesday, 19 December 2018 Monday, 14 January 2019
Rockingham, Albany and Northside Friday, 14 December 2018 Friday, 18 January 2019
Margaret Doody Respite House Friday, 21 December 2018 Monday, 14 January 2019
Treendale Gardens Respite
Will remain open
Wilson Hydro Pool Thursday, 20 December 2018 Tuesday, 8 January 2019
• Wilson Reception, 9365 4888, is unstaffed from 2pm Friday, 21 December 2018 to Tuesday, 8 January 2019
• MS Nursing cover is reduced between Monday, 17 December 2018 – Friday, 11 January 2019
however if you would like to speak with an MS nurse please ring 0458 362 188; excluding weekends and public holidays
• Individual Options out of hours contact number, from 6:30am – 8:30pm is 0417 982 814
• Our Get-In-Touch@mswa.org.au email is monitored over the break
The MSWA Member and Client Services team wish you a safe and happy festive season and look forward to working
with you again in 2019!
Are you getting enough
continence funding?
Funding for bladder and bowel products is changing and you may be entitled to more.
Call Coloplast today to find out
1800 316 650
aucare@coloplast.com
Coloplast Pty Ltd, PO Box 240, Mount Waverley, VIC 3149 Australia
www.coloplast.com.au The Coloplast logo is a registered trademark of Coloplast A/S. © 2018-05 CON629. All rights reserved Coloplast A/S
CON629-V3-A5 horizontal options.indd 1
29/05/2018 1:42:16 PM
6 | MSWA BULLETIN SUMMER 2018 MSWA BULLETIN SUMMER 2018 | 7

ANNUAL GENERAL
MEETING 2018
DR GREG BROTHERSON
THE ANNUAL GENERAL MEETING HELD 11am THURSDAY,
25 OCTOBER 2018: MSWA DELIVERS ANOTHER
RECORD-BREAKING PERFORMANCE AND CONTRIBUTION
TO RESEARCH
For those of you who could not attend the MSWA Annual
General Meeting, the following is a précis of the Annual Report.
Copies of this Report and audited Financial Statements, and
particularly the Statement of Comprehensive Income, are
available on the MSWA website.
The President, George Pampacos, reported that it gave him
great satisfaction that 2017-2018 has been another successful
year for MSWA. This has been achieved by planning, hard work,
and the implementation of a clear vision by the Board and senior
management. Mr Pampacos thanked the Board for volunteering
their time, hard work, support and dedication to MSWA.
He stated that in the next 12 months the Board and senior
managers will be considering the future of MSWA and
focusing on developing a strategic plan for the next three
years. Our 750 staff will be working hard to implement the
plan so that we can continue to improve the lives of people
living with MS and all neurological conditions.
The Treasurer, Horst Bemmerl, reported that for the year
ended 30 June 2018, on the back of very successful Mega
Home Lottery and Luxury Lottery campaigns, has been yet
another record year in all areas for MSWA.
He announced MSWA’s surplus for the year is $674,812. A total
$40,000,000
income of $58,580,213 was achieved, with a total income from
Brand, Marketing $35,000,000 and Sales this year of $36,503,653. This
strong growth is the result of concerted strategic investment
$30,000,000
in innovative products, and improved technology.
$60,000,000
$50,000,000
$40,000,000
$30,000,000
$20,000,000
$10,000,000
$0
$25,000,000
$0
Total Income 2009
$20,000,000
$15,000,000
$10,000,000
$5,000,000
$0
2009
2009 2010 2011 2012 2013 2014 2015 2016 2017 2018
Grants
2010 2011 2012 2013 2014 2015 2016 2017
Fundraising
Other Income
Expenditure on services to Members and non-Members was
$37,763,458, which includes a record research contribution
of $3,000,000.
Brand, Marketing and Sales saw a substantial increase in net
surplus of $17,457,177 (20%). Once again, the Mega Home
Lottery and Luxury Lottery delivered outstanding results.
The Multi-Choice Raffle has also shown significant growth
compared to last year.
The net cost of services provided increased by $5,765,553
(18%), which included an additional $1,868,641 to individual
options, and $2,143,561 to nursing, physiotherapy, massage,
social work, speech and occupational therapy. The success
in the Brand, Marketing and Sales division, and the addition
of National Disability Insurance Scheme (NDIS) income to
traditional Government funding, enabled us to increase the
services provided across the board, especially to in-home
care, high-support accommodation, and respite.
Total Services Grant Funding & Expenditure
$40,000,000
$35,000,000
$30,000,000
$25,000,000
$20,000,000
$15,000,000
$10,000,000
$5,000,000
Grant Funding
Expenditure
2010 2011 2012 2013 2014 2015 2016 2017
The CEO, Marcus Stafford, reported that it is always pleasing
to note the delivery of a record-breaking year for MSWA, but
perhaps 2018 most satisfying is the posting of those records within
the context of challenging times.
He continued that as a State, Western Australia has not yet
bounced back from the faltering times of recent years, and
the roll out of the NDIS has added a further tier of complexity.
2018
Grant Funding
Expenditure
Undaunted by the challenge, our 750 staff focused on the goal
of securing our leadership position within the neurological
area and then building on it further. The 2017-18 year
therefore, saw MSWA’s gross revenue reach the highest in
our history, with net profit/surplus above expectations and
our balance sheet further strengthened. We stand alone in
Western Australia as the dominant generator of our own
funds, with the majority of our revenue coming from our
own rich and diversified activities within both the retail and
commercial market.
Commercial organisations would end the story there, but
for MSWA, it is of course only the beginning of our tale. The
number and range of services offered to people with multiple
sclerosis and all neurological conditions was extended further
during the year, along with the number of locations within
both the Perth metropolitan and rural areas.
MSWA led the nation in its research contribution, lifting to
$3 million for the year with a thoughtful balance of funding
allocated within Western Australia, Australia and overseas;
the latter offering an exciting new approach to research into
progressive MS.
In keeping with recent years, MSWA has also been able to
support research projects covering all neurological conditions,
this year seeing an allocation to Motor Neurone Disease for
the first time.
There is no doubt that the work done in recent years to prepare
MSWA for the roll out of the NDIS has delivered dividends at
all levels. It has required fresh thinking and fresh branding,
with an increased need for commercial acumen. Realistically,
many organisations without that capacity or ability to respond
will cease to exist.
Our strategy to extend scale to counteract the cash-flow
uncertainties of the NDIS environment, and to provide
sustained support for people who are not eligible to join the
Scheme, has been successful. That success has given peace
of mind and surety to all people we serve, including people
with MS aged over 65 and those who are newly diagnosed or
only requiring low support.
Our cohort of people receiving services in 2017-18 showed
65% having MS and 35% having other neurological conditions.
That balance is expected to become 60%/40% by the end of
2018-19.
Marcus thanked MSWA’s many stakeholders who have played
a part in the delivery of our 2017-18 results.
Business on notice is handled by the Vice President, Mr Bill
Hassell, concerning clause 6.7, the President’s term of office.
This is passed, unanimously. With the President’s term of
office settled, new clause 7.3 is passed, also unanimously.
With regard to confirmation of persons elected to the Board,
there being no other nominations, Ros Harman and Greg
Brotherson are re-elected to the Board.
RSM are appointed Auditors for the coming year.
There being no questions from Members, the Meeting closed,
and morning tea was served.
MSWA2018392 Annual Report WA 2017 18.indd 1
ANNUAL
REPORT
2017-18
8/10/18 2:05 pm
Copies of the Annual Report and audited Financial
Statements, and particularly the Statement of
Comprehensive Income, are available on request phone
9365 4888.
8 | MSWA BULLETIN SUMMER 2018 MSWA BULLETIN SUMMER 2018 | 9

MS RESEARCH ROUND UP
SHARING RESEARCH UPDATES FROM AROUND THE WORLD
Read more at:
mswa.org.au/researchupdate
SUE SHAPLAND RN, BN, Cert MS Nursing, MSCN
From the UK MS TRUST
Could cocoa help MS fatigue?
Flavonoid rich dark cocoa may improve fatigue in people with
multiple sclerosis yet has no effect on glycaemic response:
An exploratory trial.
Cocoa made from dark chocolate contains high levels of
flavonoids which have the potential to reduce fatigue through
several different biological processes. Researchers designed
a study to compare fatigue levels after drinking a low flavonoid
or a high flavonoid cocoa drink on separate study days.
This small study, of 12 participants, involved just one drink of
each type of cocoa. The results indicated that a single drink
of high flavonoid cocoa reduced self-reported fatigue, lead to
increased physical activity during waking hours and less activity
during sleeping hours, suggesting improved sleep quality.
The researchers have recently completed a study with 40
participants taking either low or high flavonoid cocoa drinks
every morning for six weeks. The data from this larger study
is now being analysed and written up – we’ll share the results
when they are published.
Source: Clinical Nutrition ESPEN 2017; 21: 20-25.
Read more: www.mstrust.org.uk/research/research-updates
From the Multiple Sclerosis Society of Canada
Evidence of non-MS related health issues in the five years
leading up to first MS-related symptom
Background: Non-specific health symptoms, or signs, prior to
the onset of the disease is called a prodrome. Characteristics
of an MS prodrome are unknown.
The idea that environmental factors may contribute to
causation suggests that MS may take years to develop prior
to the manifestation of the disease.
Early non-specific signs and symptoms occurring years before a
confirmed clinical diagnosis is called the prodrome. Prodromes
have been identified for neurodegenerative diseases such as
Alzheimer’s and Parkinson’s; providing insight into the causes of
the disease as well as stimulating new research. To date, there
is limited research suggesting that an MS prodrome exists.
A study conducted by MS-Society Canada funded researchers,
attempted to identify the clinical characteristics of the
MS prodrome.
Health administrative and clinical data, from approximately
17,000 individuals with MS and 83,000 individuals without MS,
was reviewed from four Canadian provinces to determine if
there are any health issues in people later diagnosed with MS.
The results showed an increase in a variety of health issues
leading up to the first MS symptom were identified.
The researchers found that in the five years leading to MSrelated
symptoms, individuals eventually diagnosed with MS
were up to four times more likely to visit the hospital or doctor
with nervous system related concerns; and 50% more likely to
visit a psychiatrist compared to those without an MS diagnosis.
There were also higher rates of health system use for conditions
related to the sensory organs, musculoskeletal system, genitourinary
system, and skin-related disease in individuals later
diagnosed with MS. Of note, migraine headaches and mood
or anxiety disorders such as depression and anxiety were also
high among people to be diagnosed with MS.
Comment: This study assimilates the health-care records
from four different Canadian provinces to provide support for
and identify characteristics of an MS prodrome. These results
set the foundation for future research including specific
questions such as: Is there the presence of certain biomarkers
that could be used to identify this asymptomatic stage? Are
there therapies that could further delay MS diagnosis that can
be taken in the prodrome stage? Are there health patterns
related to sex or age in the MS prodrome?
The health characteristics of an MS prodrome could provide
an opportunity for the identification of an earlier time window
when the disease is active and potentially provide treatments
to prevent the MS onset.
Source: Wijnands J et al. (2018) Five years before multiple
sclerosis onset: Phenotyping the prodrome. Mult Scler. [Epub
ahead of print]
Read more: https://mssociety.ca/research-news
MS Society of Canada announces $5 million support for
a clinical trial on improving cognition in progressive MS
The Multiple Sclerosis Society of Canada announced a $5
million, multicentre, international clinical trial to investigate
if cognitive rehabilitation and aerobic exercise can improve
cognition in people with progressive MS. The study has the
potential to provide a treatment option for people living with
progressive MS who are affected by cognitive difficulties.
The research team will enrol 360 people with progressive
MS from 11 centres across six countries. Participants will
be treated for 12 weeks. Brain imaging will be conducted
in a subgroup of 120 participants to see whether cognitive
improvement is also linked to changes in lesion and brain
atrophy, and improved regional brain activation during
performance of a cognitive task.
This clinical study is the first of its kind to use a large sample
that incorporates many countries and has the potential to
define how best to treat cognitive dysfunction.
From MS Research Australia
A cure via repair and regeneration
In MS, myelin, the protective coating around the nerve cells
in the brain and spinal cord, is damaged by the immune
system. This protective coating not only protects nerves but
also provides nourishment and support, and without it nerve
cells will eventually die. Current MS therapies suppress the
immune system but do not promote the repair of nerve cells
which have been previously damaged.
Professor Trevor Kilpatrick and his team are investigating a
protein called Tyro3 which in the laboratory has been shown to
improve the natural repair processes in the brain by causing the
production of myelin. In this project, the team will determine
whether producing more myelin in laboratory models of MS is
enough to reverse the damage associated with MS.
They will also test if certain other medications, already
approved for treating other diseases, are able to promote new
myelin production in the brain.
These studies could lead to the creation of new therapies or
re-purposing of current therapies to enhance myelin repair,
and slow down or stop the progression of MS.
Source: Professor Trevor Kilpatrick; Neurobiology Project
2018 Investigator Led Research.
Genes shown to influence disease course in MS
Several genes have been shown to change a person’s risk
of getting MS, but there haven’t been any genes found that
influence whether a person has either an aggressive form or
mild form of the disease. A new study has identified three
genetic changes that seem to be related to disease course.
• Identifying genes that cause a person to have either an
aggressive form or mild form of MS has long been of
interest in MS but has remained elusive until now.
• A new study has now identified three changes within people’s
genes that are linked to different disease courses in MS.
• This is important as this new genetic information may
provide a way to predict outcomes early in the disease and
help guide treatment decisions.
Genetic research in MS has a long and successful history,
with more than 200 genetic changes that can influence the
risk of developing MS having been identified.
Unfortunately, one area where genetic research in MS has
been less successful is discovering genes that influence
disease course. In other diseases, genes often control
disease course, dictating the ultimate severity of the disease.
If we knew this information for MS, we could predict the type
of disease that a person will experience and this in turn could
potentially help to guide treatment choices. For example, a
person who was predicted to have a more active disease may
choose a more aggressive therapy early in the disease course.
A new comprehensive study may now have found some elusive
genes that seem to be related to disease course in MS. The
researchers compared the genes of people with benign MS
and people with aggressive MS. People with benign MS had
less disability after 15 years or more and had never received
any MS treatment. Those with the aggressive disease had
accumulated more disability in the first five years of having
MS, despite being treated for MS. The researchers looked
across all the genes in the genome, specifically in regions
of the DNA which encode the instructions to make proteins.
These parts of the DNA have traditionally been thought to be
more likely to play a role in disease progression.
Published in Journal of Neuroinflammation, the study initially
identified 16 genetic changes that were different depending
on whether participants had benign or aggressive MS. The
scientists then focused on three genes, called IGSF9B, NLRP9
and CPXM2. Changes in the first two genes were associated
with benign MS and changes in the last one was associated
with aggressive forms of MS.
To help identify how these genes were influencing the course
of disease, the scientists looked at the activity of each of the
genes in different parts of the body, and unlike some of the
risk genes which are active in the immune system, these
genes appeared to be active in brain tissue. The researchers
suggest that the genetic changes may be affecting specific
cell types within the brain altering the course of disease in
people with MS.
Identifying genes, such as the ones found in this study, may
eventually allow medical teams to predict outcomes in people
with MS and tailor treatment and advice accordingly.
10 | MSWA BULLETIN SUMMER 2018 MSWA BULLETIN SUMMER 2018 | 11

HEALTH ECONOMIC IMPACT
OF MULTIPLE SCLEROSIS
IN AUSTRALIA IN 2017
SUMMARISED BY SUE SHAPLAND RN, BN, Cert MS Nursing, MSCN
OPEN DAY TO HELP
WITH NDIS PLANS
BRAND AND COMMUNICATIONS
As mentioned in Dr Greg Brotherson’s editorial, this updated
review of the Economic Impact of MS in Australia was officially
launched in August this year. The full report and an executive
summary can be found on the MS Research Australia website.
Data from various sources was reviewed and this included
the detailed diaries of expenditure from 400 participants from
the Australian MS Longitudinal Study; a key research study
running in Australia since 2002.
Some key points of interest:
• Number of people living with MS in Australia has increased by
approximately 20% since 2010; currently estimated at 25,607
• 103.7 people per 100,000 population have MS
• The percentage of people using disease modifying therapies
(DMTs) has increased by 40% since 2010
• The latitude gradient of MS prevalence remains evident,
with the highest numbers in Tasmania at 138.7/100,000
and WA with 87.7/100,000
• The total cost for all people with MS in Australia has
increased substantially from $1.24 billion in 2010 to $1.75
billion, ie 41%, in 2017. This is due to both an increase in
the number of people living with MS and the increased
costs per person including the increased cost of DMTs
• The total costs per person of MS were slightly higher for males
• The costs of people on DMTs are slightly higher, driven by
the higher costs of the latest medications, but informal care
costs and costs from lost wages are lower
• Lost wages now account for only 32% of the economic
burden of MS compared to almost 50% in 2010
• The quality of life for people with MS is 31% lower than
the Australian population norm. This is primarily driven by
the impact of pain, independent living, mental health and
relationships
• People with secondary progressive MS had the highest total
costs despite the significant drop in costs relating to DMTs
• The annual per person cost of MS is comparable to those of
a person with Parkinson’s Disease, or the first year after a
stroke; and three times that of a person with Type 2 Diabetes
The report provides a valuable overview of the key factors
influencing the economic impact and direct and indirect cost
of living with MS. It has allowed comparison with the previous
study released in 2010 and will allow for future comparisons
which will also take into account the impact of the NDIS for
both the individual and the economy. The future review will
also show the impact on costs through access to the NDIS
and long-term benefit from the DMTs.
It is pleasing to read that employment data is improving for
people with MS in Australia. This is thought to relate to both
the positive effect of the DMTs and greater awareness of the
importance of effective symptom management.
Three of MWA’s facilities recently opened its doors to the
public as the National Disability Scheme (NDIS) continues to
roll-out across Perth and the South West. Three Open Days
were held in October across MSWA facilities in Joondalup,
Wilson and Bunbury.
MSWA want people to know that we’re here to help and for
many people with neurological conditions, putting an NDIS
plan in place can be daunting.
The MSWA team of NDIS experts can take the stress out of
creating an NDIS plan by guiding people through the process,
and ensuring they get the best from their own personalised
plan, that delivers them the services they need.
As well as learning more about the NDIS, the Open Days were
an ideal opportunity for people to find out more about the
services we deliver, meet our friendly staff and take a tour of
our recently renovated and refurbished facilities.
People living in these areas have embraced the
opportunity to receive services closer to home. The
MSWA Joondalup Centre is our latest addition to an
expanding network of facilities providing services
tailored to meet increased demand under the NDIS to
support our customers with all neurological conditions.
12 | MSWA BULLETIN SUMMER 2018 MSWA BULLETIN SUMMER 2018 | 13

ACCURATE NAVIGATION
IS KEY TO NDIS SUCCESS
GEOFF HUTCHINSON, MSWA NDIS BUSINESS DEVELOPMENT MANAGER
A quick scan of the fact sheets and publications page on the
National Disability Insurance Scheme (NDIS) website provides
the reader with over 150 hyperlinks to individual articles and
fact sheets about the will and won’t and do and don’ts of the
NDIS. Readers are provided with articles outlining subjects
ranging from a ‘Guide to being an NDIS Participant’ to
‘Assistance Animal Guidance’, and everything in between.
But which of this extensive library of information is important
and/or relevant to you; what exactly do you need to know to
successfully navigate the NDIS process?
As someone who only recently began the process of learning
as much about the NDIS as possible, it soon became apparent
to me that there were no easy answers, or a single source of
truth, when it comes to the NDIS.
While the information provided by the NDIA is useful, the
requirement for it to be generalised across all disability groups
and areas, means that the roadmap towards reasonable
and necessary remains unclear. Moreover, with delays in
the planning process and increased pressure on Local Area
Coordinators as new areas come on-line and participants
transfer from WANDIS to the NDIS, it’s more important
than ever to get clear and concise guidance at every step of
the process.
A recent review of the NDIS process highlighted five stages a
person will go through during plan development ranging from
information gathering, eligibility, pre-planning and planning
through to plan commencement. Each of these steps requires
the participant to provide clear and concise information to the
NDIA planner and each step has the potential to delay or even
derail an application, should that information not be provided.
Additionally, we are finding that the difference between a
successful and unsuccessful application can come down to
the use of approved terminology.
The best example of this comes during the eligibility
assessment stage. Here participants are required to provide
the NDIA planner with an ‘Evidence of Disability Form’
which outlines the impact of a participant’s condition. These
assessments can be completed by a local GP and many new
applicants choose to go down this route. However, we are
increasingly finding that these GP assessments are being
rejected due to ‘insufficient functional impact’ which may
result in the need for an appeal or starting the process all
over again. While the GP undeniably has the best intention
in supporting their patients, they are required to assess
you in a 30-minute appointment between a myriad of other
duties. On the other hand, MSWA provides Members with a
Nursing Assessment which is personalised, accurate, and
will utilise NDIS terminology to outline the functional impact
of your condition. While acceptance is no certainty, the clearer
we outline your requirements, the greater your chances
of success.
Another area of concern when navigating the planning process
is understanding what will and what won’t be included in your
NDIS plan. While the mission of the NDIS is for everyone to
have an individualised plan that helps them achieve their
personal goals, the reality is that many individuals are finding
that their plans fall short of this outcome. For example, the
goal of watching your kids play sport may seem like a simple
enough request, but how does a new participant know how
to breakdown all the services required for that request to
become a reality, or even that this is an acceptable goal?
Again, this is where the our NDIS team can assist by working
with you to identify your desired outcomes from the NDIS
and what the best support is to achieve them. Our highly
experienced team will work you through pre-planning and can
even attend your NDIS planning interview with you to ensure
nothing is missed. The level of support we deliver is up to the
individual, but it’s important to know it’s available and the
information is personalised just for you.
The road from enquiry to ongoing NDIS planning may have
many twists and turns but thankfully you are able to turn
to the team here at MSWA for advice, answers, advocacy
and support. Our goal as a department, and MSWA as an
organisation, is to provide you with personalised support
and guidance throughout your NDIS journey. We have now
successfully commenced over 500 NDIS plans and continue
to review outcomes to ensure we support our Members to get
the best from the NDIS.
If you would like more information about navigating
the NDIS, please give one of our Client Relationship
Coordinators a call on 1300 097 989, email us at
ndisenquiries@mswa.org.au or keep a look out for our
information sessions coming to an area near you.
Want to access research articles?
Here are the places you can access up to date research
articles relating to multiple sclerosis:
• Vitality – Our monthly research focussed e-newsletter
• Our website – https://mswa.org.au/news/latest-news
• Right here as part of your Member magazine Bulletin.
It includes great research articles and information every quarter.
Just email communications@mswa.org.au if you would like any further information.
On another note, it is with some sadness that the NDIS team,
and MSWA, announces the departure of NDIS Business
Development Manager Nigel Carey. Nigel was instrumental
in setting up the outstanding NDIS team at MSWA. His
enthusiasm and passion helped to keep everyone motivated
and moving forward during a period of uncertainty and
change. It should not be underestimated the impact Nigel has
had on this organisation and on behalf of everyone here at
MSWA we wish him all the best for his future endeavours.
On a personal note I am very pleased to introduce myself
as the new NDIS Business Development Manager at MSWA.
I have been in the role for just over two months and have
thoroughly enjoyed my experience. My goal is to continue the
excellent work Nigel and the team started, while working to
ensure we always offer best practice service to our Members.
I previously spent five years working across the tertiary
education sector and 10 years working within the not-forprofit
Health sector. I look forward to meeting more of you in
the months ahead as I continue my career with MSWA.
14 | MSWA BULLETIN SUMMER 2018 MSWA BULLETIN SUMMER 2018 | 15

BALI BUDGET
ON WHEELS
ANITA GAMBA, MSWA MEMBER
When winter approached earlier in the year, I toyed with the idea
of going to Bali for some much-needed warm hydrotherapy.
Bali offers the perfect tropical paradise for every Aussie tourist.
But what if the Aussie tourist in question is a middle-aged
woman using a wheelchair full time? Hey, how hard can it be?
I booked my flights and accommodation through a local
travel agent. Everything was times two as Gay, my beautiful,
fearless and experienced support worker, was coming
with me.
So, off we go!
First word of advice for anyone doing air travel in a wheelchair
is to check the availability of an ‘aisle wheelchair’; a small,
narrow chair with wheels that the staff use to take you to
your assigned seat. I discovered this the hard way. With my
own wheelchair stowed away with the luggage, getting on the
plane wasn’t a problem. We used the airport’s complimentary
aisle wheelchair. However, to my astonishment, this was
removed from the plane once I had boarded and was never
seen again. Effectively, this meant that Gay needed to assist
me to use the bathroom and to disembark upon arrival. As I
can weight-bear for very short distances, this was not a major
hiccup. However, for anyone unable to weight-bear this would
be a major issue.
Okay, so maybe the plane ride wasn’t ideal, but surely a prebooked
room with full disability access would be foolproof,
right? Well, what passes for disability access is subjective
overseas. The first hotel in Sanur (which I shall not name) was
immediately full of obstacles. Steps hampered our access
to reception. Then it turned out there was no record of our
booking. Upon finally reaching the room, I discovered that this
sweltering and smelly box was certainly not as advertised.
Unfortunately, it was in such bad disrepair and so very small
that my wheelchair couldn’t fit into the bathroom, let alone
out to the deck. So much for access and careful pre-planning.
Fortunately, I was able to reach my booking agent, and found
another vacancy in Kuta, so the Four Points by Sheraton
became home for the first part of our stay. Despite what
seemed like 50,000 steps leading to reception, the hotel had
a good ramp. The staff happily pushed me to the top, which is
just as well because the incline was brutal.
When Gay and I got to the room, we collapsed onto our beds.
Oh my gosh! It was air-conditioned, it was clean, it was
everything I had hoped the first hotel would be. However,
when I tested the entrance into the deluxe bathroom, my
wheelchair couldn’t fit through the door. “No problem,” said
the cheery staff. The pesky bathroom door was promptly
removed altogether. Problem solved!
The pool occupied much of the ground floor, and much of my
time. Rails and ramps were accessible and adequate. During
our time in the pool, we met up with some other overseas
holidaymakers who had travelled to Bali for hydrotherapy.
We all agreed, not only were the facilities top class at the
Sheraton, the staff were professional and accommodating.
Getting around Bali outside the hotel boundaries was slightly
more of a challenge. Obstacles at first were easy enough to
manoeuvre through, but they just kept coming. The badly
degraded footpaths and roads were filled with vendors,
produce, tourists, animals, children, tree roots, litter and
construction work. Whilst we did manage to manoeuvre
around all of this, it certainly would not have been possible for
me without the extra support from Gay. At times I needed to
be pushed or pulled around the impediments. There was also
the odd occasion that a team of friendly and helpful locals
picked my chair and me up and carried me over obstacles. I
felt like a Balinese Princess on wheels.
The next place we stayed was at the beautiful Amadea in
Seminyak. The staff there couldn’t do enough to make us feel
safe and comfortable. They built ramps on site for me, found
a shower chair, moved furniture around inside the room and
outside near the pool. Nothing was too hard.
Gay was not available for the full two weeks and I had
planned accordingly. We had a seamless hand over in mind
with a replacement support worker due to land prior to
Gay’s departure. But Bali’s volcano timed another eruption
the day the changeover was scheduled. The airport was
closed indefinitely until the ash cleared, leaving me without
a support worker for a day. For me this wasn’t a problem at
all, I had developed a rapport with the other guests and staff
who collectively made sure I was comfortable and well looked
after. For a less flexible traveller with higher care needs,
this could have proved quite a concern. My replacement
support worker did finally arrive, and the rest of the trip was
fairly smooth.
If you are planning to travel to Bali in a wheelchair, don’t
expect the same Australian standards of buildings and
amenities. However, what Bali lacks in amenities, it makes up
for in its people’s inclusiveness and ingenuity. I welcomed the
blanket of humidity and the smells of Bali that hit my senses
like the aromas of cooking, overripe fruit, incense, cars and
oh so many people.
With an open heart and adventurous spirit, Bali is very much
worth the effort.
Blessings and ciao.
Anita
16 | MSWA BULLETIN SUMMER 2018 MSWA BULLETIN SUMMER 2018 | 17

COMPUTERISED
NUTRITION CHECK-UPS
DIETARY FIBRE
KAREN HUMPHRIES, MSWA DIETITIAN
KAREN HUMPHRIES, MSWA DIETITIAN
What is it?
The MSWA Dietitians are now offering computerised
nutrition check-ups, using a comprehensive tool called
FoodWorks 9 to assess your diet and if it is meeting your
individual nutrient needs.
This will help the Dietitians at MSWA gain insight into your
diet by:
• Analysing your dietary intake
• Using the latest, most comprehensive Australian and New
Zealand food data
• Using credible, industry leading software built by Dietitians
for Nutrition Professionals
Based on this information, MSWA dietitians will be able to:
• Compare your nutritional intake to the national
recommendations for your age, activity level and gender
• Discuss any nutrients of concern and provide practical
recommendations to help you improve your diet
If you'd like to know more information, or to find out if
this service is appropriate for your situation, contact the
MSWA Dietitians on 9365 4888.
What is dietary fibre?
Dietary fibre is a type of carbohydrate present in some
foods such as vegetables, fruits and grain foods. This fibre
is not absorbed as you digest your food, it ends up in the
large intestine and is fermented by friendly gut bacteria. It
is important to include fibre in your diet as it helps to keep
you feeling fuller for longer, keeps your bowels regular, can
improve cholesterol and blood sugars, supports healthy gut
bacteria, and can even help prevent some diseases such as
bowel cancer, diabetes and heart disease.
There are two main kinds of fibre, insoluble and soluble.
Soluble fibre dissolves in the small intestine in the presence
of water to form a gel-like consistency which slows down
digestion, keeps us feeling fuller for longer and helps the
digested food to move more smoothly through your gut. Foods
high in soluble fibre include fruits, vegetables, legumes, oats
and barley.
Insoluble fibre helps to bulk stools and keep bowel movements
regular. You may like to think of insoluble fibre as the kind
that doesn’t dissolve in water, instead it works like a ‘brush’
that keeps our intestines clean. Foods high in insoluble fibre
include wholegrain breads and cereals, nuts, seeds, fruit and
vegetable skin, legumes and beans.
How much fibre do you need?
The acceptable adult fibre intake for males each day is 30g of
fibre, and 25g for females.
Eating a variety of plant-based foods will help you get enough
fibre each day.
An example of 30g of fibre per day.
Food source
Amount of fibre
1 cup wholemeal pasta 7.9g
100g kidney beans 6.5g
½ cup rolled oats 4.5g
30g (approx 25) Almonds 2.6g
5 dried apricots 2.5g
1 slice of wholegrain bread 2.4g
1 medium banana 2.3g
1 medium apple 2.2g
Total Fibre 30.9g
Resistant Starch
Another type of carbohydrate that supports good gut health is
resistant starch. Resistant starch is also not absorbed during
digestion in the small intestine; instead it is fermented by
your gut bacteria in your large intestine. This fermentation
process helps the good bacteria and helps to improve overall
bowel health. Foods that are good sources of resistant starch
include slightly green bananas, cooked and cooled potato and
rice, and tapioca.
RECIPE:
Banana and Blueberry Bread
Ingredients
• Olive oil spray
• 4 ripe bananas peeled
• ¼ cup sugar or other sweetener, ie honey
• ½ cup milk
• 2 eggs
• 1 cup self-raising flour
• 1 cup wholemeal self-raising flour
• 1 tsp ground cinnamon
• 1 cup frozen blueberries
Method
Preheat oven to 220ºC (200ºC fan forced). Spray a 20 x
10cm loaf tin with oil, line base and sides with non-stick
baking paper.
Reserve one banana for presentation and mash remaining 3
bananas in a large bowl.
Add sugar, milk and eggs and mix with a fork until well
combined.
Sift flours and cinnamon on top of banana mixture, returning
husks from the sieve to the bowl. Mix ingredients together
until just combined, taking care not to over-mix, then gently
fold through blueberries (or try raspberries/dried fruit).
Spoon mixture into prepared loaf tin and smooth the surface.
Slice remaining banana thinly and overlap slices through the
centre of the loaf.
Bake for 35–40 minutes then cover with foil and bake for
a further 20 minutes. Centre of loaf will remain moist but
not wet when tested with a skewer. Allow to cool in tin for 5
minutes then turn onto a wire rack.
Cut into 1 cm slices before serving.
18 | MSWA BULLETIN SUMMER 2018 MSWA BULLETIN SUMMER 2018 | 19

THE CAVEMAN
MIND
SIMON ROLPH, MSWA COUNSELLOR
YOUR GRIEF FINGERPRINT
KAREN BROWN, MSWA COUNSELLOR
The human brain is a complex organ. It has allowed us to
invent the wheel, build cities of the modern age and travel to
the moon and back. But this wonderfully inventive brain that
can plan, problem solve and predict can also be the cause of
much pain and psychological suffering.
In my role as a Counsellor I am frequently working with people
struggling with worries about the future, having thoughts of
hopelessness and fear of judgement. For some, just knowing
why our minds are so susceptible to thinking like this can
be useful.
To answer the question, ‘why’, we can use our own history to
look back at the main purpose of the early human mind.
Cavemen and women lived in an age where everything had
the potential to be life threatening. The rustle in a bush could
be a hungry sabre-toothed tiger. The shadow in the distance
could be a violent tribe coming to attack. The noise in the
back of the cave could be a grizzly bear. It was a scary world
and the caveperson’s mind’s main function was survival.
The eternally optimistic caveperson’s mind, the mind that
wasn’t concerned about unknown noises and shadows
would not have survived for long! These cavepeople are not
our ancestors. The cavepeople that survived and created
offspring tended to think ‘negatively’. Any noise, movement,
unknown situation could result in potential death, and these
are the minds we have inherited. A mind that is geared
towards safety first.
Thankfully most of us in Australia live in a world much safer
than the one described above. Despite this, we continue to
have a mind focused on safety, but the dangers we perceive
are different. Instead of bears in caves, tigers in bushes and
enemies over the hill, our mind tends to worry about finances,
health and future unknowns. We can dwell on painful
memories and predict the worst of any situation.
The following list was originally printed in “Caveman Mind
Metaphors” by Dr Russ Harris which demonstrates the
purpose and importance of the caveman mind and how we
experience this same ‘negative’ mind in the modern age.
Caveman mind; watch out! There was a sabre-tooth tiger on
that hill last week. It might come back.
Modern mind; projecting the painful past into a scary future.
It happened before so it’ll happen again.
Caveman mind; you survived an encounter with a bear or a
wolf, so it’s useful to replay it. Go over the events in your mind
and remember what you did to survive, so that you are better
prepared for next time.
Modern mind; we go over and over painful memories,
dwelling on them, reliving them, even when there’s nothing
useful to learn, or the lesson has well and truly been learned.
Caveman mind; as a caveman you must fit in with the group.
If you are alone, you soon die. The wolves will eat you for
breakfast! If you survive past breakfast, the bears will get you
for lunch. So, your mind compares you to others in the group.
Am I fitting in, contributing enough, following the rules? Am I
doing anything that might get me thrown out?
Modern mind; comparing yourself to others, fear of negative
evaluation, fear of judgement, fear of rejection.
Caveman mind; conservation of physical resources is vitally
important to a ‘Stone Age’ person. If this task or challenge
involves significant expenditure of time and energy, and there’s
a good chance of failure, then it’s safer not to undertake it.
Modern mind; our minds love to conjure up fear of failure.
And they readily generate hopelessness. “There’s no point as
I’ll only fail.” This is especially the case if there have been
failures in the past. It also shows up as your mind telling you
to give up if you’re not getting quick or easy results.
The experience of worrying, dwelling on painful memories
and comparisons to others can be deeply painful. In response,
it can be helpful to understand and remind ourselves why
our minds keep saying this stuff. The mind is doing its most
important job; it’s trying to keep us safe and keep us alive.
This is what the mind has evolved to do, regardless of the
potential emotional turmoil. Our challenge is to learn how to
recognise and work with our caveperson mind and not be
dominated by it.
If you would like to learn more about the impact of your
own caveperson/modern mind, you can contact the
MSWA Counselling department on 9365 4836 to organise
an appointment with one of our trained Counsellors.
Reference: Harris, R. (2017). Caveman Mind Metaphors.
Grief is a natural response to any loss a person experiences
in their life. If the person, animal, relationship, or situation
is significant to you, it’s normal to grieve the loss you
are undergoing.
With the diagnosis of MS, or in fact any chronic illness,
there can be grief over the loss of your physical health, the
future as you perceived it and a sense of trust and safety
in your physical health; and potentially the world in general.
Furthermore, your circumstances may trigger other events
that result in you trying to juggle multiple and compounding
losses at the same time.
How you grieve depends on many factors, including your
personality and coping style, your support networks, your
life experiences, your faith, and how significant the loss is
to you. Everyone experiences grief differently and there are a
multitude of cultural and circumstantial variables that affect
how people express and cope with it. The uniqueness of the
experience can be expressed in many ways and it can affect
every part of your life; your emotions, thoughts and behaviour,
beliefs, physical health, your sense of self and identity, and
your relationships with others.
Emotionally, grief can leave you feeling sad, angry, anxious,
shocked, regretful, relieved, overwhelmed, isolated, irritable
or numb. Grief can affect your thinking and the way you
behave, leaving you unable to concentrate or make decisions,
EMOTIONAL
Anxiety • Sadness • Anger/Irritability
Guilt/Regret • Numbness/Overwhelmed
Relief • Loneliness/Isolation
Depression • Shock
THOUGHT
Denial • Disbelief • Confusion
Self-critical • Preoccupation
Depersonalisation • Negative thoughts
Forgetfulness
become forgetful and sometimes causing you to worry that
you will never feel better. It can also impact on your physical
health, leading to headaches, nausea, aches and pains. Many
of these reactions are not constant but instead can come in
waves, often triggered by further losses, memories or often
seemingly unrelated events. It is also not unusual to question
certain aspects of your lifestyle and relationships as you
search for answers and meaning following the loss.
What research into grief tells us is that the journey through
grief is a highly individual experience, in the same way as
your fingerprint is totally unique to you. Whatever your
loss, it’s personal to you; there’s no right or wrong way to
grieve. Below is a diagram with an example of some of the
common reactions to grief, you may have some, all or none
of the symptoms listed or in fact add some of your own. Of
course, there could be a multitude of explanations for these
symptoms and it may be necessary to explore them with your
GP, specialist or counsellor as they may not necessarily be
grief related.
However, it is empowering knowledge to understand your
grief and the impact/s it could potentially be having on you
emotionally, physically, cognitively and behaviorally.
Our MSWA counselling team are experienced in working
with people experiencing grief. If you would like to speak
with a Counsellor, please call 9365 4888.
YOUR GRIEF FINGERPRINT Some examples of the possible reactions to grief
PHYSICAL
Hollow stomach/Nausea • Headaches
Weak muscles • Lack of energy
Tightness in the chest • Breathlessness
Dry mouth • Vision changes
BEHAVIOURS
Lack of concentration • Appetite changes
Social withdrawal • Restlessness
Dreams • Avoidance • Restlessness
Ambivalence
20 | MSWA BULLETIN SUMMER 2018 MSWA BULLETIN SUMMER 2018 | 21

THERMOREGULATION
SANDRA WALLACE, MSWA MANAGER STRATEGIC SUPPORT SERVICES AND PROJECTS
Regulation of the body temperature is controlled by the
autonomic nervous system. Impairments of this mechanism
may occur in people with multiple sclerosis (MS). The
following discussion may assist those who experience heat
sensitivity during the summer months, and at any time when
the surrounding temperatures are elevated.
The incidence of impaired thermoregulation in people with
MS is reported to be between 60% and 90%. This condition
presents as inappropriate increases, or decreases, in body
temperature. People with MS can be adversely affected by
small changes in internal and external temperatures. An
increase in the core temperature of people with MS causes
reduced nerve conduction velocity. Even small elevations
in temperature may aggravate existing MS symptoms
temporarily until the core temperature has reduced.
Symptoms should return to the baseline within 30 minutes if
the cause of the temperature increase has been eliminated.
Symptoms which persist for 24 hours or more may be related
to a coincidental MS relapse and people with MS should seek
medical advice if they are concerned.
Symptoms may include blurred vision, change in sensory
symptoms, decreased strength and fatigue.
Increases in temperature may occur during or following:
• Exercise – with or without increased air temperature
• A hot shower or bath
• Infection or illness causing an increase in body temperature
• Driving in a hot car during summer without air conditioning
• Sitting in a hot, humid room with little air flow
• Sitting quietly in a heated room during winter
• Sitting in a hot bath
Strategies to minimise symptoms due to an increase in
core temperature:
• Exercise in a cool environment – consider the time of day,
temperature of the pool water 27 degrees
• Use a fan or air conditioning in the home and/or car
• Exercise regularly for short periods, change the intensity of
the exercise program
• Maintain hydration by drinking cool water before, during
and after exercise plus ice cold water drinks when hot
• Wear a cooling neck tie around the neck
• Wear a cooling vest before or during exercise (see link below)
• Wear loose, light clothing
• Cool down with a cool shower after exercise
• Do not exercise when unwell
• Assess your air conditioning needs before summer and
update your home unit if required – refrigerated air
conditioning is the most effective (see link below for Energy
Subsidy Scheme)
Air Conditioning
MSWA can assist Members on low incomes with funding
towards the purchase of an air conditioner for their home,
where they do not currently have one. This funding is made
available through the generosity of a Lotterywest grant.
Be aware, reverse cycle air conditioning is more effective
than evaporative air conditioning.
For further information about the grants, and
eligibility, contact the MSWA Social Welfare Department
on 9365 4835.
The Thermoregulatory Subsidy
To access the subsidy, the impact of heat must be significant,
and the applicant must hold a pensioner concession card,
health care card or health care interim voucher. This subsidy
is $709/annum as at 1 September 2018 and is paid into
your personal account through the Department of Treasury
and Finance. It will contribute towards the costs associated
with higher-than-normal power usage when running an air
conditioner. Payment is made annually, and reapplication is
required every two years. Your treating doctor must complete
the forms.
For further information and application forms please
contact the Social Welfare department on 9365 4835 or
they can be obtained online at:
https://www.finance.wa.gov.au/cms/uploadedFiles/_State_
Revenue/Other_Schemes/Thermoregulatory_Dysfunction_
Application_Form.pdf
Alternatively, you can phone the Energy Subsidies
Enquiry Line on 9262 1373
Cooling Garments
Cooling garments are soaked with water and help to cool the
body through the skin and blood circulation. They may be
cooled in the refrigerator or simply kept moist for effective
cooling. Some cooling vests have inserts that are put in the
freezer to cool. Products include neck ties and vests. Further
information is available from the MSWA Physiotherapy or
Occupational Therapy staff on 9365 4888.
Arctic Heat Cooling Vest Coolinit
www.arcticheat.com.au www.coolinit.com.au
Email admin@articheat.com.au Telephone: 9248 5355
or Free call: 1800 88 00 67
References:
MS Practice 2009. For Health Professionals MS Australia June 2009
M. Sylvester: Benefits and Strategies of Exercise Prescription for
PwMS. MS Society of WA 2010
• Check the air conditioning in your car before summer
• Park car in shade, allowing for shift of sun over time
• Consider using thermoregulatory bedding (available through
Pelican Manufacturing or Nikki G’s) if sleep is affected.
Some people find bamboo sheets are also effective
22 | MSWA BULLETIN SUMMER 2018 MSWA BULLETIN SUMMER 2018 | 23

WHAT IS COGNITION?
ROSEMARIE DRAVNIEKS, MSWA MANAGER OCCUPATIONAL THERAPY
REASONS WHY I
MIGHT BE FALLING
ROSEMARIE DRAVNIEKS, MSWA MANAGER OCCUPATIONAL THERAPY
Cognition refers to all aspects of memory and thinking.
Cognition includes the ability to:
• Focus and maintain attention
• Divide attention between tasks
• Learn and recall new information
• Think, reason and solve problems
• Comprehend
• Recognise objects and people
• Plan, perform and control one’s actions
Not everyone who has multiple sclerosis (MS) experiences
cognitive problems, however, approximately 50–70% of
people with MS have some degree of cognitive problems.
Individuals may experience a different combination of
problems. (Rehabilitation in MS, 2002)
Common changes in cognition
• Speed of thinking
• Memory
• Attention and concentration
• Information processing
• Problem solving
(Leech, 2005)
The most common area of change is the speed at which a
person can take in and process information. Basically, it takes
longer to process information. This is often misinterpreted
as a memory problem. However, memory involves both the
storage and recall of information. When the information is
presented slower, such as by the rate of speech slowing
down, then the person is able to respond appropriately.
The most common type of memory problem is related to the
recall of details of an event or discussion. A discussion may
be recalled but not the details. Some people find the recall of
names difficult; it is not uncommon for people to forget to do
planned tasks.
The ability to sustain attention can also be difficult. Tasks
may not get finished as the person moves from one task
to the next because attention is not sustained to complete
each task. Such problems tend to occur more frequently
when there are many things happening at the same time.
Distractions, either visual or auditory, may make attention to
detail more difficult.
Difficulty in information processing refers to problems with
being able to manage and absorb the information given and
making sense of it. They may have difficulty understanding
the main factors to be considered, to recall and study those
factors, or to come up with an appropriate choice.
Problem solving includes thinking and planning of actions
and involves generating possible solutions based on the
information presented.
Causes of cognitive changes in MS
MS in an autoimmune disease, whereby the body attacks
the myelin and nerves of the central nervous system. Myelin
is a fatty tissue that covers and protects the nerves in the
brain and spinal cord. This process causes inflammation and
scarring, disrupting the communication between the brain
and the rest of the body. Scarring can occur anywhere in
the brain and spinal cord, which leads to a wide range of
symptoms being experienced by people who have MS. These
symptoms can include changes in cognition. (Making Sense
of Multiple Sclerosis, 2003)
Cognition difficulties occur when scarring causes blocks in
the pathways between the thinking modules of the brain.
Benefits of recognising cognitive problems
Changes in cognition can have an impact on a person’s daily life.
When the nature of those changes is recognised, it is possible
to use appropriate strategies to help manage these changes,
and reduce the negative impact of change. (Leech, 2005)
Although not common, where cognition is significantly
impaired, strategies must be put in place to protect the
person’s financial status and safety issues in the home.
Other factors impacting on cognition
Apart from the MS scarring, other factors can impact on
cognition. These are normal to everybody, but more obvious
where cognition functions are already challenged.
• Feeling tired or fatigued
• Feeling stressed
• Pain
• Raised core body temperature through exercise,
heat or sickness
• Excessive noise or visual distraction
• Certain medications
Personal reasons
• Balance; reduced balance when walking, balance can also
be affected by medications
• Vision; difficulty seeing where you are going and tripping
over obstacles
• Medication; may make you drowsy and lessen your
awareness
• Physical Environment; clutter, steps, trip hazards
• Cognition; attention, awareness or concentration difficulties
• Fatigue; can affect your cognition, balance, vision
• Pain; can make you weaker and increase your fatigue
• Muscle weakness; difficulty holding weight whilst walking
• Spasticity; difficulty walking
• Reduced sensation; difficulty knowing where your body or
feet are in the environment
What are some others?
• Footwear; may be too large, incorrectly fastened or have
inappropriate grip to the floor
• Overconfidence; important to know your capabilities and
that they can change
• Impulsivity; impulsively standing or walking without
planning your route
• Unfamiliar environment; unaware of hazards
COGNITION GROUP
Did you know, approximately 50% of people diagnosed
with MS experience difficulties with thinking, planning
and memory?
MSWA Occupational Therapy staff are now holding regular
four-week programs to help address the cognition issues
common for people with MS and other neurological conditions.
The groups discuss the following topics:
• Memory
• Attention
• Information processing/learning
• Higher brain functioning
Don’t let MS take the fall for it!
It is important to consider other potential reasons why you are
falling, MS may not be the underlying reason you are falling.
Make sure you discuss with your doctor when you fall. Some
other causes of falls may be:
• Nutrition
• Low blood sugar
• Depression or dizziness
Why did I fall? Keep a record
It is important to keep a record of:
• Where you fell
• What time of day you fell
• What activity you were doing whilst you fell
• How you were feeling before you fell
• The environment you were in
• What your plan of action was after you fell
ROSEMARIE DRAVNIEKS, MSWA MANAGER OF OCCUPATIONAL THERAPY
This information will help you and your health professional
to work out why you are falling. It can help to eliminate the
source of the fall, for instance if it is always in one spot due
to slippery tiles or a folded rug. Knowing this information can
help you and your health professional to create safe solutions
to help keep you on your feet.
If you have concerns you can speak with an MS nurse,
physiotherapist or Occupational Therapist; call 9365 4888.
These groups are open to anyone living with a neurological
condition; this group will provide an opportunity to connect
with your peers and to share your experiences and strategies.
If you are interested in attending one of these groups,
please get in touch with the MSWA Occupational Therapy
Department on 9365 4888.
24 | MSWA BULLETIN SUMMER 2018 MSWA BULLETIN SUMMER 2018 | 25

QUENCHING
YOUR THIRST
JAMAICA GRANTIS, MSWA SPEECH PATHOLOGIST
VOICE BANKING
LAURA RYAN, MSWA SPEECH THERAPY ASSISTANT
As we move into the warmer weather of summer, it is
increasingly important we are all mindful of staying well
hydrated. Maintaining adequate hydration can be challenging
if you are a person living with dysphagia (swallowing
difficulties), especially if your swallowing difficulties require
you to drink thickened drinks.
What are thickened drinks?
There are two kinds of thickened drinks; those considered
‘naturally thick’ (eg a milk shake or smoothie), and those we
prepare by mixing a thickening agent to a regular or thin drink,
so that it thickens artificially. Thickened drinks are usually
recommended by a Speech Pathologist if a person is shown
to be aspirating thin drinks; that is, thin fluid is entering the
lungs while drinking.
Aspiration can potentially lead to aspiration pneumonia.
Thickened fluids may help to reduce a person’s aspiration
risk by slowing down the flow of liquid, allowing a person
more time to organise and coordinate a safe swallow. There
are different levels of thickened fluids, ranging from slightly
and mildly thick, to moderate and extremely thick. Each level
can be tested to ensure it meets the right consistency, or
viscosity, for safe swallowing.
Did you know?
If you have been recommended to drink thickened drinks,
this usually means that all liquid you consume should be
thickened, including the broth in your soup, or the milk in your
cereal. It might also mean that you find it difficult to eat juicy
foods such as watermelon or oranges.
People who drink thickened drinks are at higher risk
of dehydration
Dehydration can lead to side effects such as headaches,
dizziness, dry skin, fatigue, cognitive difficulties, and other
more serious health concerns. There are many reasons why
it might be harder for someone who drinks thickened drinks
to meet their recommended daily fluid intake.
For example, thickened drinks:
• are ‘heavier’ and can leave you feeling fuller quicker, so you
tend to drink less
• take longer to flow through the mouth and throat before
being swallowed; they can also be harder to suck through a
straw and may need to be ‘drunk’ from a spoon – so it often
takes longer to finish a thickened drink
• may taste or feel different in the mouth – some thickened
drinks leave behind a mild coating in the mouth, and if not
prepared properly, could be a little lumpy, so some people
might find them unsatisfying to drink so they tend to drink less
• can sometimes be more expensive, leading some people to
only drink what they can afford
Thickened fluids aren’t always safer
Thickened fluids tend to leave behind some residue in the
mouth and throat after swallowing, and this residue can
sometimes be aspirated into the lungs after swallowing. It is
usually safer to aspirate thin/regular water than to aspirate a
drink mixed with a thickening agent.
The MSWA Speech Pathology team considers thickened
drinks a last resort
Our goal is to help MSWA Members swallow as safely,
efficiently and comfortably as possible, without modifying
or restricting usual eating and drinking habits. To do this we
explore all other options first, before going down the path
of trying thickened drinks. For example, do changes to a
person’s drinking posture help them to swallow with more
ease? Does the use of mindful swallowing strategies help
a person to swallow with more control? Are there adaptive
cups or straws we could try that help to better control the
delivery of fluid into the mouth, allowing a person to swallow
with greater safety? These and many other options should be
explored before recommending thickened fluids.
Thickened fluids aren’t always forever
Sometimes a Speech Pathologist might recommend a person
drink thickened drinks following a serious hospital procedure,
dental surgery, or a short-term exacerbation of MS symptoms.
Sometimes thickened fluids are recommended only during
times of extreme fatigue. The Speech Pathologist’s role is
to monitor and regularly review whether thickened fluids are
required long-term.
Thickened fluids aren’t all bad though
For most, thickened fluids help to improve swallow safety and
maintain hydration.
If you are having difficulty drinking thin or thickened
drinks, please contact the MSWA Speech Pathology
team on 9365 4888 for advice and support.
Similarly, if you would like to discuss whether thickened
drinks are appropriate (or possibly no longer appropriate)
for you, please contact the MSWA Speech Pathology team.
I have donated my voice. Not a sentence I thought I would
ever say.
Being a therapy assistant in the MSWA Speech Pathology
Department suits my personality perfectly. Every day I
am helping people, by implementing a therapy program
to help people with their communication devices. These
communication devices enable people, that might otherwise
be unable, to express their thoughts and emotions. They
empower people to share their opinion, initiate conversations,
tell jokes, instruct others and much, much more. Picture the
late Steven Hawking if you don’t know anyone who used one.
When setting up a communication device, you can often pick
from several pre-recorded voices, male or female etc. This is
great, however, they usually don’t sound anything like you. This
is where ‘voice banking’ comes in, not to be confused with
message banking, which is recording a sentence to be played
back exactly as it was recorded eg. “I love you sweetie.”
Voice banking is recording a sample of your voice to create
a unique synthetic voice that can then be used with these
communication devices. The quality of the finished synthetic
voice depends on the number of sentences and the quality of
the voice recorded. So, it’s crucial to complete the recordings
early on even if you think you might not need it.
Recording your voice can be a lengthy process, recording
anywhere between 400 – 3,200 sentences, the more you
record the more personal the synthetic voice will sound. It’s
advisable to complete the recordings over several sittings,
such as a few sentences at the same time each day so this
can take several weeks or months to complete depending on
your fatigue levels and other commitments. So, it’s strongly
recommended that you begin voice banking as early as
possible. Once you have completed the recordings you can
listen to your synthetic voice before deciding if you would like
to use it.
What if it’s too late? If you’re unable to record the sentences
but have a close relative who sounds like you, they might be
willing to do the recordings and ‘donate their voice’ for your
use. Because synthetic voices sound slightly robotic in nature
you won’t sound exactly the same as each other.
I recorded 3,155 sentences, which seemed never-ending
whilst recording them, however, I was intrigued to hear what
a synthetic me would sound like. I had a listen after 650
sentences and I was really impressed, it definitely sounded
like me. The more I recorded the better it got but I would have
been very happy using it at that level had I needed to! So,
my synthetic voice is now available for people to use on their
device, who knows one day I might bump into someone using
it, wouldn’t that be amazing! I might even need it myself or it
will never be used by anyone, but I will have had the experience
of recording it to assist others through the process.
Interesting fact: Stephen Hawking’s voice, ‘Perfect Paul’,
was derived from recordings of Dennis Klatt, an American
researcher in speech science and the pioneer of computerised
speech synthesis. Dennis recorded his own voice when
developing the software and this became the voice you heard
when listening to Stephen Hawking. Dennis Klatt later lost his
voice to cancer prior to his death in 1988.
26 | MSWA BULLETIN SUMMER 2018 MSWA BULLETIN SUMMER 2018 | 27

MSWA CARERS SUPPORT PROGRAM
CARERS GROUP’S REALITY
VOLUNTEER NEWS
COLIN CRANE, MSWA CARER
DAWN BURKE, MSWA COORDINATOR OF VOLUNTEERS
Whether you are new to caring or many decades along the
carer’s path, there is much to be gained from attending one
of the MSWA carers’ support groups. While professional
health carers receive training to manage their caring roles,
the average person who isn’t exposed to long term caring, is
unlikely to have developed the strategies required to remain
untouched by the rigours of caring over extended time.
New carers, dealing with family or friends who have recently
received a MS diagnosis, may be confident and sure that they
are capable of managing a path few would willingly choose,
and for good reason. When confronted with the illness of those
around us, imprinted cultural social training often begins
with something like pity, followed by sympathy, then maybe
empathy and hopefully, with some personal development,
compassion. This is where the support progress can begin.
My personal experience of caring for someone afflicted with
MS, tells me that as a carer you will be tested beyond your
current comfort zone and new skills will be required for this
journey, which doesn’t aim to be overwhelming, but rather,
fulfilling and worth doing.
Long-time carers will also most likely need to manage
things like compassion burnout along with all those issues
in common that long-term carers will eventually need to deal
with. At whichever stage of the caring journey, one can find
relevant assistance at the MSWA carers’ support groups.
CELEBRATING CARERS
EVE PARSONS, MSWA CARER SUPPORT GROUP FACILITATOR, PERTH EVENT
National Carers Week 2018 was held from 14–20 October to
recognise and celebrate the sterling work of carers every day
of the year.
MSWA obtained support from Lotterywest and Carers WA
to offer a long lunch at the Bentley Pines Restaurant for the
members of all three of our carer-support groups as well as
carers from the broader MSWA community. The lunch on 18
October provided a special opportunity for our carers to enjoy
some downtime and meet and/or reconnect with others.
Attendees received a delicious three course meal which was
delivered with silver service by a troop of eager waitstaff! The
food and drinks were much enjoyed – particularly the mojito’s
and liqueur coffees afterwards, which were something of a
theatrical performance at the table!
Most of us make clearer and better decisions when we have
a robust understanding and knowledge base to inform our
decisions. Information available on government support
services, subsidies, Centrelink, the NDIS transition, personal
support, personal counselling, financial counselling, respite,
new treatments and much more, is scattered and spread
across multiple departments and agencies, and can be
difficult to gather together in one place.
Relief from your personal situation can also be gained
from simply sharing your experience and learning from
fellow carers’ stories and successes in a safe, secure, nonjudgemental
confidential environment. The carers’ group
format enables fresh perspectives and knowledge of the
issues experienced by long-term caring, which is currently
being studied by professionals.
Amongst the carer’s challenges, it may turn out that you are
not as superhuman as you thought you were (like myself), and
the MSWA carers’ groups provide a gateway for all the above
information, and are staffed by understanding professionally
trained MSWA staff who above all show willing compassion,
are very knowledgeable, genuine, warm, real people, not to
mention that they also have excellent taste in cakes for the
morning tea breaks.
I for one am grateful to MSWA for this support program
and suspect many other carers out there may be also.
Conversation and laughter swelled throughout the meal and
some very canny carers then raided the adjoining bakery run
by catering students, for some sweet and savoury bargains
before heading home.
Each carer received a gift bag from Carers WA which also
included additions from MSWA, such as a keep cup, flower
seeds, stress ball, notepad and pen, and teabags. It was a
lovely way to remind our carers to look after themselves as
well as they look after their loved ones. A very big thank you
goes to Lotterywest and Carers WA for their help in making
this event possible!
If you, or someone you know, is a carer and is interested
in the MSWA carer support groups, please contact
Lisa Papas, Counselling Service Manager, on 9365 4836.
Hello and welcome to our summer edition. So much has
happened and more importantly will have happened by the
time this Bulletin reaches your doorstep.
I find it difficult writing these articles, as some of the
information I put in hasn’t quite happened yet as it just
doesn’t fall within the timelines set to create this wonderful
Bulletin, that holds amazing stories and information for you
all to share.
Let’s begin with what has happened over the past months.
As most of you will know by now, I love going on the MSWA
camps and retreats held throughout the year for our Members,
their carers and their families. These lovely short breaks are
funded through Lotterywest, which is how we can manage
to provide such affordable, fun-loving experiences for all
that attend.
I have been so fortunate this year to be able to attend them all
except one. And as I quite often prattle on about, these breaks
cannot happen without staff attending and working more than
their daily hours. So, in essence, the staff are volunteering as
well. Of course, these camps wouldn’t run as well without
the volunteers who also attend to give a helping hand, which
makes the experience that little bit more enjoyable for all.
Having said that, I would like to take this opportunity to thank
Jacqui from Bunbury for assisting with the Treendale Getaway
and Adele for assisting with the family camp at Woodman
Point. Having you there made a huge difference to everyone,
and we are truly thankful for your assistance and appreciate
the time you gave over the three days.
For those that are interested, the Treendale Getaway wasn’t
a camp per se, it was more of a get together of friends from
one of our Outreach groups. These friends wanted to go away
together, and due to their different care needs, this made it
difficult. The getaway was hosted at the Treendale Gardens
respite house which provided 24/7 care, (when we were there
and not prancing around Bunbury) and offered everyone the
comfort of their own room.
It also provided insight for Members who had never attended
the respite house before. Now they have stayed there, they
won’t hesitate to go back again. A stay in Treendale can
be arranged with Manager Linda Kidd or Coordinator Paula
Kennedy directly. Everyone who attended this getaway had a
ball and are looking forward to their next one.
In August, MSWA was privileged to be offered a space at
the Skillswest Expo, to promote volunteering options. This
three-day event saw many people attending to look at future
career options. I had a lot of interest and networked with other
organisations. It was a valuable experience for all who attended.
I was lucky to be positioned across from an organisation
educating people on resumes and how to stand out above the
rest of the applicants. I listened to their workshops and here
is my tip from their sessions.
The tip with writing your resume is you need to write a different
resume for each job and use the words in the advertisement
regarding to what they are looking for. Also, be creative with
your experiences, as these can fall into many of the required
skillsets being asked. For example, if you run a home and
manage the household finances, this is financial experience
and good with budgeting. If you have been looking for jobs
and not getting very far, give it a go, you never know!
Let’s now move to what has happened and hadn’t occurred
since writing this article. For those of you who don’t know, it
was International Volunteer Managers Day on 5 November,
which is celebrated and recognised at Volunteering WA.
Melville Volunteer Resource centre have assisted me over the
years in recruiting volunteers and invited me to a function to
celebrate this.
It was also International Volunteers Day on, 5 December to
recognise volunteers across the world and the valuable time
they give to others. What I find interesting is that there are
many people who volunteer and don’t even recognise they are
doing so; they just help others out. Do you know people who
do this, or are you one of them?
Lastly a big thank you to our volunteers. We are very honoured
to have you all volunteering with us, no matter how much time
you give. Your time is appreciated and valued by us all here at
MSWA. Our Members and our staff benefit greatly in different
ways what you do is amazing and helps our wonderful
organisation tick along. The value that each and every one of
you add to MSWA is immeasurable, and we are truly blessed
to have you in our lives.
May you all have a wonderful and safe Christmas and
enjoy the festive season. I look forward to catching up
with you in 2019. Don’t forget my door is always open
and you can call 9365 4888 if you would like to speak
with me. Take care, and bye for now.
28 | MSWA BULLETIN SUMMER 2018 MSWA BULLETIN SUMMER 2018 | 29

THAT’S LIFE
WITH NARELLE
NARELLE TAYLOR, MSWA MEMBER
HEARTACHE
ROS HARMAN, MSWA MEMBER
Every year, my one and only sister comes to Perth from her
home in Sydney, to celebrate my birthday during the NSW
school holidays. We are very good company for each other
and because we both have so many decades of experience,
we know how to celebrate!
This year, Janine stayed in the home of our mutual friend
Kate, and I stayed in my Aged Care facility. All the while,
the staff here did my washing and any housework that may
have needed doing. Janine may well have been doing that at
Kate’s place. I didn’t even ask, for fear of having to help! She’d
come here each morning, by train with Kate, who travelled
on to work, then Janine and I would have all day to do as
we pleased.
One particularly lovely morning that week, my support worker
Melissa, took us to a gorgeous venue on the Swan River.
The view turned out to be the only thing all three of us liked.
We each ordered and that’s where the trouble began. The
cash register operator was, shall we say, unobliging. She told
us abruptly that as hard as it would be for me to hold and put
the burger in my sweet little disabled mouth, the chef would
not cut the bacon or press the two layers of the bun together.
Janine was very charming and we were all so shocked that
the iron maiden taking our orders could not be cajoled into
meeting our needs. We paid and exited stage right, to sit
at a table where the view of Crawley Bay was just lovely.
C’est la vie!
The jolly bun was brought to us at the table. Because the
bacon hadn’t been cut and the layers of the jolly thing weren’t
pressed together, I would have had to be a hippo to eat it.
Janine, like a surgeon, removed the bacon from the bun, cut
it, replaced it whilst muttering about the toaster press, then
walked aggressively toward the girl on the cash register. We
sat, admiring the view, and growing less and less hungry until
the pressed bun was brought back to the table. For Janine’s
sake, I wanted to be hungry but the coffee had been very
nice. I enjoyed it and the next time I go there, it’s all I’ll order.
Janine and I had much more satisfaction in a large shopping
centre near where I live and we actually went back there a
second time. I wondered if the counter staff remembered us,
but we hadn’t had to assert ourselves, so they had no reason
to. Janine was able to relax.
My support worker, when we get around, can be charming
or assertive as is necessary. When there is only her and
me, I have never felt that she negotiates without me. That
really pleases me because if the support worker speaks
on my behalf, it can be that they speak ‘over’ me, and I find
it demeaning.
If you are old enough, you may remember Bonnie Tyler singing
“It’s A Heartache” in her characteristic gravelly voice in 1978.
Those words have been in my head a lot lately.
I’ve had my own heartache this year. Kris, my beloved partner
of the last 13 years, ended his own life in May. He was unwell,
having fought a battle with cancer over the last couple of
years, and then his MS began to progressively worsen after
years of relative stability. I believe he thought he was destined
for a future that would see him rapidly lose his independence
and become unable to do all the things he has enjoyed over
the last few years. I think he could not face that.
The force of life is strong in most people, indeed in most living
beings. On the whole we are biologically driven by a desire to
preserve and extend our own lives as much as possible. This
drive is an innate necessity for the survival of all species. It
is therefore always a shock when someone overrides that life
force and chooses death instead.
I am not going to debate the rights and wrongs of suicide.
There was a time when it was illegal in Australia, which is
somewhat perverse. How do you punish someone who is
dead? While the government does not punish people for
suicide any more, there is an inevitable sense of punishment
for the loved ones left behind in the pain and sorrow they
experience after such an act.
One of the saddest parts of this story is that Kris did not seek
help when he was despairing about his future. He didn’t go
to see his neurologist to see if there was anything he could
do about his symptoms. He didn’t talk to the counsellors at
MSWA about his feelings. He didn’t even talk to me about
them. If he had done so, things could have been different.
A journalist called Henk Blanken, writing in August this year
for The Guardian stated, “my death is not my own. My death
will only ever mean something to those I leave behind.” Kris’s
death has meant that I have to reinvent myself. I am no longer
a woman in a relationship, sharing a reasonably large part
of my life with my partner. Now I am a single, middle-aged
person who lives alone, a person looking for things to occupy
myself, so I am not lonely, seeking companionship where I can
find it. My priorities have changed radically. My expectations
for the future have changed completely.
The impact of Kris’s death on my life will never leave me.
There will always be a dark well of sadness in my soul as I
remember Kris. I know I will be okay though. I am a resilient
person, and I have my family and many friends around me.
I am hoping to be a grandmother soon, which will bring a
completely new joy and purpose to my life.
If you are feeling despair or fear for your future, I urge
you to reach out to others. MSWA have a team of well
trained professional counsellors who will listen to you
and help you find a brighter future.
Rage, rage against the dying of the light.
Do Not Go Gentle Into That Good Night.
Dylan Thomas
Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.
Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.
Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.
Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.
Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.
And you, my father, there on the sad height,
Curse, bless, me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.
30 | MSWA BULLETIN SUMMER 2018 MSWA BULLETIN SUMMER 2018 | 31

ATTITUDINAL HEALING
SOME NEW-YEAR RESOLUTIONS
ACCESS TO THE MUSIC
DR ANDREW E ONG
SALLY NEWMAN, MSWA MEMBER
The New Year will be upon us sooner rather than later and
now is the time to make a list of resolutions and promises
aimed at improving your health by healing your attitude. Begin
your list learning to meditate by fixing your thoughts on what
is true, good and right. These are things which are pure and
lovely, like places you have been, clouds and colours. Dwell
on them, listen to your inner self because the outer world
of circumstances shapes itself to the inner world of your
thoughts. Meditation can heal your body.
If you have limited movement but can transfer safely, set your
workstation up so that you can transfer in and out of it each
day. This routine then becomes part of your exercise program.
Sit less, stretch more. Sometimes take the long cut.
Decide to succeed. If you think you are beaten, then you
already are. If you think you dare not, you will not. If you think
you’ll lose, you’ve already lost. If you think you are outclassed,
you are. Success begins in your state of mind.
You have to be sure of yourself before you can ever win a
prize. Sooner or later, the person who wins is the one who
thinks they can. You have powers you never dreamt of. You
can do things you never thought you could do. There are no
limitations to what you can expect, for such limitations are
all in your own mind. If you think you can do something, you
are right. If you think you cannot, you are also right. Thus all
limitations are ultimately self-imposed. When you reach for
the stars, you may not get one, but you won’t come up with a
handful of mud either.
Make the decision to frown less and smile more. As part of
your daily exercise routine take five big breaths and smile.
Then think of six good things in your life. Give someone a
compliment, a hug or send a loving thought to someone
special. Spread the beauty. Of all the things we wear, a smile
and good humour is the most precious.
Resolve to be happy. Commence by writing down all your
worries then bury them in the back garden and get it off your
chest. You have probably heard that one before. However,
while you are there, take the time to watch the bees at work,
listen to the birds chattering to each other. Mother Nature at
work is wondrous in its complexity. Savour the moment to
break the routine in your life.
Before you know it you will be tranquil and at peace with
yourself. Remember, many people fail to be happy, not
because they never found happiness, but because they did
not stop to enjoy it. Arnold Glasow once said, “happy is the
person who knows what to remember of the past, what to
enjoy in the present, what to plan for the future, who gives
without remembering, and takes without forgetting.” I like
this quote because it is simple. Happiness is simple. Dwell on
all things that make you glad, expel everything which makes
you sad. A happy thought is life’s richest blessing.
Undertake to talk less and listen more. I keep repeating this
because I have proven it time and again. A wise person can
learn more from a foolish question than a fool can from a wise
answer. Remember, the only fool bigger than the person who
knows it all, is the person who argues with them. When you
focus your mind on absorbing every detail in each moment,
you will hear every sound and feel all textures.
So here is my list for the New Year. I plan to watch less TV,
and communicate more. Condemn less, build more. Complain
less, cheer more. Hate less, love more.
Resolve to live in such a manner that when people speak ill of
you, no one will believe them. Take risks. Flops are a vital part
of life’s menu, so never be the one who misses out on any of
its courses. Explore alternatives. You might find comfort in
those who agree with you, but there is also the opportunity to
grow when talking to those who disagree. Remember, one of
the greatest discoveries of our generation is that we human
beings can alter our lives by altering our attitudes of mind.
Make up your mind to be a better person. It is not what cards
life deals you that will make or break you, but how you play
the cards. Resolve to look after your friends. Be careful of
your choice of friends, and even more careful of your choice
of enemies. You can always tell a real friend. That is the
person who does not feel you have done a permanent job
when you have made a fool of yourself. Just make the best
of the way things turn out. Treat disasters as if they were
trivialities, and never treat a triviality as if it was a disaster.
Little things do mean a lot, but remember that winners are
only ordinary people with extraordinary determination.
Some people make the world special just by being in it.
You can be such a person.
In times gone by, I was the girl at the music festival dancing in
the mosh pit, singing until I had no voice left and waving my
arms in the air like a lunatic trying to get the attention of the
lead singer or drummer. It was usually the drummer that was
the cutest on stage.
These days I am not that girl. Why? Is it because I can’t lift my
arms up in the air anymore and wave them around frantically,
or that my walker doesn’t let me dance like I used to? Gosh
no! It’s because I am heading towards 45 years of age and I
think I would look like a complete goose in the mosh pit with
the teenagers from Generation Y.
I still love going to festivals, and in recent years have gone
to many throughout Western Australia. It still stands that
Nannup Music Festival continues to be my favourite.
Nannup Music Festival has been happening since 1988
and celebrates 30 years in March 2019. About three hours
from Perth CBD, Nannup town is situated on the lands of
the Bibbulmun people on the north side of the Blackwood
River. After seven consecutive years making the journey to
our beautiful south west, I am excited to be heading down
again this summer to soak up the land, the music, the art and
the people.
Here are my top ten reasons why Nannup is my number one
music festival choice
1. Diversity of music genres
2. Ease of access
3. Lots of shade
4. Beautiful Location
5. Amazing volunteers and event organisers
7. Accommodation choices
8. South West weather
9. Family friendly
10. First Aid support
Nannup Music festival has accommodation options from the
caravan park, B & Bs and of course in true festival style,
camping grounds. Great news for us with mobility issues is
that even the camping ground at the edge of town offers a
shuttle bus to bring you back to the main street. There is also
ACROD parking bays directly behind the main amphitheatre.
Last year I had a tough one, with a few hot days and fatigue
deciding to bring on some pretty spectacular leg tremors.
Lucky for me each camp ground, along with the main street,
has first aid stations, and staff were amazing, offering to
freeze my ice packs on rotation to help keep me cool.
I was tempted to make my way to the front of the concert stage
and try my tremors out as a new dance move, but fortunately
they subsided, and I was able to sit back and enjoy the night.
For more support there is a St John Ambulance on site for the
entire weekend as well. Hey, there is even wheelchair access,
disability toilet and shower facilities throughout the festival.
Western Australian Companion Cards are accepted, so
grab a support person and book online for this summer!
http://nannupmusicfestival.org
32 | MSWA BULLETIN SUMMER 2018 MSWA BULLETIN SUMMER 2018 | 33

SOUTH WEST REGIONAL NEWS ROUNDUP
BUNBURY CARERS’ LUNCH
KELLIE HANSEN, MSWA COUNSELLOR
Great conversation, connection, scrumptious food and plenty
of laughs were abundant at our Carers Lunch held on 16
October 2018 at the Bunbury Hub.
According to Carers WA, there are 320,000 Western
Australians who provide unpaid care and support to a
family member or friend who requires assistance due to
disability, illness or frail age. Carers are essential in providing
encouragement and comfort along with helping people to
retain their independence and quality of life.
Carers Week is a nationwide awareness week held annually
in the third week of October and is a celebration of carers
and the integral role they have in our community. A range
of events were held throughout WA including morning teas,
lunches, exhibitions, seminars and a conference.
This year MSWA were fortunate enough to successfully
obtain a grant for Bunbury through Carers WA to host our
own event – a lunch at the Bunbury Hub. Our lovely atrium
was transformed into a special place for guests to enjoy some
music, conversation and relaxation, all while experiencing a
delicious grazing table from local caterers Tapalicious.
BUNBURY OUTREACH
AT CHALBURY PARK
LEONIE WELLINGTON,
MSWA SENIOR COUNSELLOR
On a glorious spring day, the Bunbury Outreach group was
welcomed by Jeff and Karen Whittock to a shady spot beneath
some of the many beautiful trees in the garden of their bed
and breakfast in Harvey.
Chalbury Park B&B has more than two hectares of gardens
to enjoy. Our MSWA staff prepared and served morning
tea while Brett and Carmel serenaded us with live music.
The health and wellbeing benefits of being connected to
others and spending time in nature cannot be underestimated.
The music and laughter is such a good boost for the soul.
Thanks to all who organised the outing and to those who
attended, for making it a morning to remember.
If you would like to experience some of this for yourself
on your next trip to the South West, you can get all the
details at www.chalburypark.com.au.
Highlights of the lunch were the Thai curry/cauliflower soup
and chocolate brownies! Guests were able to peruse some
information on mindfulness, self-care, Carers WA, and also
had the opportunity to participate in some origami and
mindful colouring. At the end of the lunch, guests were given
a goodie bag to take home filled with chocolate, stress balls,
pens, a mindful colouring book and lots more.
We had some very positive feedback from our guests
that this was a lovely time to take a break from their caring
role, to relax and connect with other carers who are in a
similar situation.
We would like to thank Carers WA and Lotterywest for
their support of this event.
GREAT SOUTHERN NEWS ROUNDUP
CAROLINE CLARKE-SMITH, MSWA ALBANY OUTREACH NEWS
It has been another busy period with lots to report.
Our physiotherapy exercise classes have been great, with
some regulars turning up every week to participate in a
variety of different ones, like strength and balance. Well done
to those who have attended but there is still room for more!
Yoga will be back in 2019 with four six-week sessions
planned, so keep a look out for those dates to be announced
early next year.
Hydrotherapy has been very popular with both Monday and
Thursday classes well attended. They run between 8.00
am and 11.00 am at the Albany Leisure and Aquatic Centre;
for more information contact Suzanne or Judith at the office
on 9841 6651.
We have had some great guest speakers this year at the
group, including a lawyer from the Albany Community Legal
Centre who came along and gave a great talk on Wills, Power
of Attorney and Advanced Medical Health Directives. This was
a very interesting talk and they made some appointments for
Members to have their Wills redone, or to get more information.
Thanks to all those who came along and got something from
it. We will be getting them back again next year.
Another interesting one was a police officer who came to talk
about drugs, scooter safety and to just generally answer our
questions. This was great as we had a good turnout, and he
was forewarned that he could be asked some curly questions.
Thank you to the Members who were there, you didn’t let me
down as you did ask some good questions.
THE CANNING SHOW,
WILSON OUTREACH
ZURAINI HUSSAIN, MSWA SUPPORT WORKER
Congratulations to all MSWA Members who participated in
the Canning Show 2018 during November. Among us, we
have discovered there are many skilful and talented people
and I am so proud to work with them. Here are some of our
prize winners:
Joan Bedford
Sheila Hayfield
Trudi Fay
– Champion in Painting & Drawing
– 1st and 3rd prize
– 1st prize for 3D Card
– 1st prize for Mixed Media
(paper bark landscape)
David Mewburn – 2nd prize for Mosaic
Heather Jordan – 2nd prize for Painting & Drawing
It was also great to have a visit from CEO Marcus Stafford
who gave us some great news about the future for MSWA,
especially here in the Great Southern. Members and staff
have some exciting changes that will be happening over
the next one to two years, so we will keep you updated as we
find out more.
And the Great Southern will start rolling out to the NDIS from 1
July next year, so we look forward to the information sessions
that MSWA will be putting on for us in early in 2019.
In the meantime, from all the Members, volunteers and
staff in the Great Southern we wish you all a Merry
Christmas and a safe and happy New Year.
I would like to thank all of our lovely volunteers on Thursday;
Robert, who is always there to support us in every way during
our painting sessions and Lynn, who organised the entries on
behalf of our Members.
Last but not least, Giselle with her brilliant ideas
for improvised ‘tools’ for our Members to use.
Well done everybody.
34 | MSWA BULLETIN SUMMER 2018 MSWA BULLETIN SUMMER 2018 | 35

TODAY AND
EVERY DAY,
WE ARE
PROUD TO
SUPPORT OUR
MEMBERS