Bulletin - MS Society Western Australia

Bulletin
Autumn 2011
Mega Home Lottery Grand Prize
The Official Magazine of The Multiple Sclerosis Society of Western Australia
CCSVi updAte Anxiety ACCeSSing ComputerS trAVelS in JApAn

THE MulTIPlE SClEROSIS
SOCIETy OF WA (INC.)
Telephone (08) 9365 4888
Fax (08) 9451 4453
Freecall 1800 287 367 for Country Members
Member Services Directory
General Manager, Member Services
Sue Shapland Phone: 9365 4840
Manager, Nursing
Immunotherapy, Newly Diagnosed information.
MS information and broad social issues.
Lou Hatter 9365 4809
Hospital Liaison Nurse 9346 3333
(S.C.G.H.) Pager: 4126
Community Nurses
Jayne O’Sullivan 9365 4846
Marissa Pineiro 9365 4838
Bec Montanus 9365 4870
Anne Weaver 9365 4812
Dee Lucey 9365 4812
Jill Crombie 9365 4870
Denise Menzies 9365 4846
Bunbury/Albany
Community Access.
Bunbury Office 9791 2472
Jennifer Richards Mobile: 0408 952 363
Wilson Outreach 9365 4888
Beechboro Lodge 9377 7800
Southside Outreach 9592 9202
Joondalup Office
Unit 2/87 McLarty Ave 9300 9500
Hamilton Hill
Manager, Jayne O’Sullivan 9331 5780
Physiotherapy
Physiotherapy assessments,
exercise prescription and massage.
Rehabilitation and circuit programmes.
Hydrotherapy.
Manager, Marilyn Sylvester 9365 4834
Southside - Friday 9592 9202
Occupational Therapy & Social
Work Departments
Wheelchair assessments, independant living
skills, home, vehicle, employment assessments
and fatigue programs.
Manager, Sandra Wallace 9365 4804
OT Department
Heather Mearns 9365 4833
Robyn Loxley 9365 4831
Rose Blight 9365 4831
Social Work Department
Counselling, Income and Welfare issues.
Irene Willis 9365 4835
Welfare Officer/Service & Funding Locator
Support Counsellors:
Cate Litjens 9365 4808
Leonie Wellington 9365 4811
Monday/Thursday/Friday.
Bev Brechin 9365 4811
Tues/Wed/Thurs.
Senior Counsellor Lisa Papas 9365 4836
Monday/Tuesday/Thursday
Peer Support Program Co-ordinator
Cate Litjens 9365 4808
Co-ordinator for Camps & Recreation 9365 4891
Margaret Doody Respite House
Manager Respite, Noni Lowther 9385 9574
Fern River
Manager, Linda Kidd R.N. 9356 2747
In Home Care
Community Care/Care Packages.
Coordinator, Kathy Corrigan 9365 4820
Wendy Prew 9365 4824
Damien Hill 9365 4824
Nicola Ryan 9365 4824
Staff Training and Development
Coordinator, Alice Foong 9365 4842
Editorial Committee:
Greg Brotherson (Editor),
Ros Harman (Co-Editor),
Marcus Stafford (CEO), David Bugden,
Sue Shapland, Sandra Wallace, Narelle Taylor,
Suzanne Bradbury, Cate Litjens.
The Editor welcomes unsolicited submissions.
All articles are subject to a reviewing process.
The views expressed are those of the Authors
and do not neccessarily reflect the views of the
Society’s staff, advisors, Directors or officers.
inside
Your Society
Editorial.. ............................................................................................................................3
From The CEO’s Desk .....................................................................................................4
General Manager Member Services Report .........................................................5
Assitive Technology .................................................................................................... 10
Mega Home Lottery ................................................................................................... 11
Calendar of Events ...................................................................................................... 12
Outreach ......................................................................................................................... 25
Volunteers ...................................................................................................................... 27
Research
CCSVI .................................................................................................................................. 6
Vaccinations and MS .................................................................................................... 7
Oral Treatment ................................................................................................................ 8
Health and Wellbeing
Tips for Anxiety ............................................................................................................14
Sexual Issues .................................................................................................................15
Ask the Counsellor ......................................................................................................17
Get a Good Nights Sleep ..........................................................................................17
Life Goes on with Joanne .........................................................................................18
Recipe ..............................................................................................................................19
Members’ Stories
Travels in Japan ............................................................................................................20
That’s Life with Narelle...............................................................................................23
My Life My Legacy .......................................................................................................24
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 www.multiple-wa.asn.au/news
FRONT-COVER PHOTO: Natalie Gruzlewski at the MS Mega Home Lottery house.
Editorial
Disability is a word that has come
into fashion. When I was growing
up, I rarely heard it mentioned.
People with significant disabilities
were usually not in public view,
and on the rare occasion that they
were seen they were often looked
at with pity, embarrassment, shame
or even repulsion. They frequently
struggled silently and with no
support. No one talked about
disabilities.
Thank goodness things have
changed. These days people with
disabilities are out and about
everywhere in our communities: in
our shopping centres, our schools,
our office buildings and our
theatres. Everyone knows someone
with a disability whether it is the
woman who lives next door or the
man in the television show. News
about people with disabilities is
regularly mentioned in the media.
By Ros Harman
Recently, our politicians started to
discuss a complete revamp of the
way that people with disabilities
are supported financially, for care
and equipment. This could lead
to vast improvements in the lives
of many disabled, if the politicians
eventually stop talking and put
some changes into action. (see
NDIS information on page 8)
Disability is now becoming part of
the national conversation and that’s
a good thing for those of us living
with Multiple Sclerosis. MS can
lead to serious disabilities for some
people. Even those with less severe
“obvious” symptoms may have to
deal with the debilitating effects of
things that are not always obvious
to their family or onlookers. Fatigue,
eye problems, muscle weakness and
cognitive issues are less “visible”
but can be just as challenging, and
for many people with MS some
C’MON AUSSIE!
The MS Society of Western Australia is proud to extend its
congratulations to the 2011 Australian of the Year, Simon McKeon.
Simon was diagnosed with MS more than 10 years ago, and says
his personal struggle has inspired him to keep fighting for the
disadvantaged.
Today he is a prominent investment banker as well as a record breaking
yachtsman. In fact, Simon has held the World Speed Sailing Record for
most of the past two decades.
But it is Simon’s tireless commitment to supporting a range of charities
that has earned him the nation’s highest accolade. Among many other
worthy endeavors, Simon was the founding chairman of MS Research
Australia.
A leading social entrepreneur, Simon demonstrates how business and
philanthropy go hand in hand, giving tremendously of his time and
energy to many organisations.
On behalf of all at MSWA, we thank Simon for his dedication to helping
Australians living with MS. We’re proud of you.
form
of limitation is
part of everyday life.
But despite that, people with MS
in WA have access to the latest
treatments available, and the best
support and services possible to
help them to live rich lives.
Here at the MS Society of WA
we don’t just talk. We act to help
people, wherever they are in their
journey and that’s good news!
Simon McKeon receives Australian of the
Year award from Julia Gillard, PM
PAGE 2 PAGE 3

From the CEO’s Desk General Manager Memb er Services
If today’s world is busy, then in
comparison, yesterday’s world was
quiet and as for tomorrow’s world,
we can but imagine.
I remember with some nostalgia the
early days of my career, when the
arrival of the morning’s post largely
set up my day’s work; punctuated
occasionally by the odd incoming
phone call, but that was about it.
Telexes seemed like magic and as
for the fax machine - well. That was
beyond magic. Mystical perhaps.
My handwriting and other squiggles
relayed faithfully around the globe.
Now of course we have mobile
phones, the internet, emails, skype,
video conferencing, you-tube,
facebook and twitter, to name a few.
Information that used to take weeks
to circle the globe is now available
in moments. The terrible fires in
Western Australia would once have
been a local issue only, but were
beamed live into lounge-rooms
around the world. The capacity to
stir emotions and shake confidence
in real time, ever present.
And although there might be times
when we lament the old days,
nostalgia’s not what it’s cracked up
to be and today is here to stay.
Without these great advances,
the assistive technology that adds
quality of life to our Members would
remain in the realms of science
fiction, instead of the real benefits
available to people with disabilities
now: touch screens, voice response
systems, mobility aids and so many
more.
Through technology, the markets are
also responding to the ‘instantness’
of today. When those 24 Wall Street
stockbrokers signed the agreement
under the buttonwood tree in 1792
they saw a world where sustained
capital would grow companies. Now
By Marcus Stafford
stocks change hands at the press of
a button or the sniff of a rumour.
That is the world in which your
MS Society operates and we are
very watchful of developments to
position ourselves strongly.
Deciphering the code!
OK. A couple of examples. Here’s
what we are keeping an eye on.
Equity markets are in a better
mood, but not back to pre GFC.
Hard and soft commodities are
strong. The US has faced up to its
problems and isn’t following Japan.
The German economy is booming
and is managing its sovereign debt
prudently, keeping a watchful
political eye open for trouble
in other parts of Europe. Exec
summary – some stability returning.
And then there’s China! China,
China, China! Bless ‘em! Rather a
big trading partner for our State and
the second biggest economy in the
world; currently sacrificing growth
to contain inflation ... nice problem
to have! And although the shortterm
benefits to Western Australia
might look good, we really don’t
want China to overheat.
For Australia, our GDP has had a
temporary downward blip, caused
by the wind-down of the stimulus
package and the Queensland
floods. But I reckon that will be
temporary. If all goes according to
plan we should surge again in less
than 12 months.
WA is flat in retail, hospitality and
some parts of manufacturing.
Housing is currently flat although
some confidence is creeping back
into the market.
Mining, of course is a different
picture. Linked to construction,
they are the buoyant bits of our
economy. Buoyant, but volatile,
driven by commodity prices,
although I think the medium-term
looks strong.
So much information churning
around to keep the mind occupied.
So what do I think? All in all, pretty
good for WA and so pretty good for
our MS Society.
And then there’s you and me.
Household savings have gone up by
about 10% in the last year. Good?
Maybe...as long as it doesn’t mean
that a more conservative consumer
won’t buy our raffle and lottery
tickets. Have you bought yours by
the way?
We’re all about more services and
more funding for research. Good
decisions mean that we can do
more good things for folk with MS
and other neurological conditions.
And now you know why I find it
hard to sit and relax with the TV at
night! The MS Society’s business
streams, investments, new ventures
and general decisions rely on us
reading these signals and staying
ahead of the game. Decisions have
consequences, either way.
While I’m watching CSI, the world
might be changing! Well, not really,
but you get my drift!
The last few months have really tested
the reserve of so many Australians and
New Zealanders. You can’t help but
be moved by the scenes of the many
natural disasters that have wreaked
so much havoc and caused loss of life
and property. It is quite distressing
just to watch so much heartache,
and nearly everyone knows someone
involved somehow. However it has
also been uplifting to see the many
acts of spontaneous bravery, kindness
and generosity in such times. It makes
you proud to be an Australian when
you see how supportive the broader
community is and to hear of the hope
and good humour that shines through
in the face of adversity.
Hope is so important for everyone; at
our recent Newly Diagnosed Seminar
one of the feedback comments was
that the neurologist presentation
“was great and gave us hope” – this
made me really happy! For so many
years, not that long ago, a diagnosis
of MS meant great uncertainty; there
were no treatments to offer and what
was going to happen just did! Thank
By Sue Shapland
“Learn from yesterday, live for today, hope for tomorrow.” Albert Einstein
goodness this has turned around
considerably over the last 15 years.
The first disease modifying drugs have
made a huge difference for many and
now there are new oral medications
approved for use, although not yet
subsidised by the PBS. MS is very
individual as we know and so now that
the treatment options are expanding
the neurologists are better able to find
the best or most effective treatment
for their patients.
MSWA has also made huge changes to
how we operate particularly over the
last 8 -10 years; we know we can help
most when we support people with
MS from the time of diagnosis. That
early link, and an ongoing relationship,
is essential. We can support through
providing information relevant to
each individual reducing the risk of
information overload and unnecessary
distress. A Google search of MS will
result in over 11 million hits, and
the quality control and guarantee of
accuracy isn’t there. We can provide
many references and links that will
help you navigate this myriad of
Update Your Email Address.
Please check if we have your current email
address, so we can keep in touch
information. Our nursing and allied
health staff specialise in MS and are
here to help however we can; we just
need you to call.
Our web page is being updated again
and we hope that the information and
links will be useful for you. If you have
an email address we would love to
update our database and then we can
send out news flashes and new links
of interest.
We live in a world of constant change
and challenges but what is clear to
me is that in the world of MS there
is hope; for better treatments, better
long term outcomes and that the
research underway worldwide will
lead to identifying the cause and
eventually we hope a cure!
PAGE 4 PAGE 5

Research Update
CCSVI
What is it? Chronic cerebro-spinal venous insufficiency (CCSVI) is a theory proposed by Professor Zamboni in Italy.
He suggests that abnormal narrowing in veins taking blood from the brain causes a build-up of iron which crosses the
blood-brain barrier damaging cells in the central nervous system.
Prof Zamboni’s study reportedly
found CCSVI in 95% of the 65
participants with MS, but not in a
control group of healthy people
and people with other neurological
conditions.
As a result of this many centres
around the world immediately
offered interventional procedures of
unproven efficacy and for uncertain
reasons, involving the dilation of
the presumed narrowing’s. Some
serious side effects occurred and a
small number of deaths.
Around the world specialist
neurologists and vascular
surgeons, including Prof Comi
and, Prof Zamboni, called for more
research based evidence that
this abnormality existed and was
relevant in MS and that until proven
no surgical procedures should be
carried out due to unacceptable
risk.
Several million dollars has been
committed around the world to
perform testing in several countries
to confirm if this condition really
exists in people with MS. So far the
findings do not support the presence
of the condition in most people with
MS who were screened; hence its
relevance is questioned.
The most recent study from Italy
(Baracchini and others) reported
in the Annals of Neurology
2011 followed earlier negative
investigations. They summarised
their initial results “our findings
do not support a cause-effect
relationship between CCSVI and
MS. Further studies are warranted
to clarify if it is associated with
later disease stages...” They found
venous anomalies present in only
5 of 50 patients tested, but also in
people without MS.
A study from the Netherlands
(M.Wattjes and others), published
in the British Medical Journal,
commented “findings suggestive of
anomalies of cranial venous flow
were observed in both MS patients
and healthy controls. ... It is likely
these findings reflect anatomical
variants of venous drainage rather
than clinically relevant venous
outflow obstructions”.
The results of more studies will be
published in the near future and
we eagerly await more research
based evidence of the presence
or otherwise and relevance if any,
of CCSVI to MS. We will provide
updated information on the MSWA
web page and through the Bulletin
or you can contact the Society for
web links.
Input and editing from Prof Bill
Carroll and Prof Allan Kermode.
CCSVI Update. Adapted from
UK MS Trust website and journal
articles as cited.
MS Awareness Week Members Forum
Wednesday June 1st 2011
0930- 1200
Bentley Tech Park Function Centre
BENTLEY
Guest Speakers will provide:
an update on the latest research & treatments
an overview of Assistive Technology
For more information and to book your place please ring
Pam LeClus on 93654869 or email Pam.LeClus@mswa.org.au
We have recently had queries
regarding the Gardasil
vaccination for the prevention
of cervical cancer and if it can
precipitate MS.
Q: I have MS and want to
know about the risks of my
daughters having the Gardasil
vaccinations. I heard that it
has brought on MS symptoms
in some girls. I need to be
well informed or else I won’t
allow our daughters to be
vaccinated.
Each year winter brings the risk of
flu; flu vaccinations will soon be
offered for those at risk; the young,
the elderly and those with existing
illnesses. We often get enquiries
from Members asking whether they
should have the vaccination or not.
Our medical advisor Dr W Carroll
offers the following comment:
“There is no evidence that these
vaccinations make MS worse or cause a
relapse. Should one occur, around the
time of ‘flu’ vaccination it is thought to
be a coincidental event. Occasionally
people with MS having vaccinations
can have a brief exacerbation of
A: Prof A. Kermode responded:
Although there have been girls /
women vaccinated with Gardasil
who have had MS attacks
reported, there is no evidence for
an increased incidence of MS as
a result of the vaccination.
There has been close monitoring
of this Australia wide and the
numbers of girls with MS are the
same as expected by chance;
this is monitored closely by the
TGA.
Therefore if I had MS and I had
a daughter, I would still get her
to have the Gardasil vaccine as
I calculate the risk of cervical
cancer (which can be prevented)
is greater than the (unchanged)
risk of developing MS.
existing MS symptoms but this is not
worsening of the MS. People with MS
are advised to discuss this with their
treating neurologist or physician as
soon as possible as it is essential to
have the vaccination earlier rather than
later to reduce the risk of contracting
the flu”
Don’t forget to ask about swine flu shots
as well – your GP and or neurologist
can advise you on these matters.
Research Update
http://www.tga.gov.au/alerts/
medicines/gardasil.htm this TGA site
says:
“The TGA is also aware of a
small number of cases in which
neurological symptoms, similar to
those experienced in patients with
a demyelinating disorder such as
multiple sclerosis, have been reported
shortly after HPV vaccination. In
some of these cases symptoms were
present prior to the vaccination.
These reports have been actively
investigated by an independent
panel of clinical and scientific
experts in immunology, neurology,
epidemiology and paediatrics. Based
on the available reported cases, the
incidence of demyelinating disorders
amongst recipients of Gardasil is not
demonstrably higher than would be
expected to occur by chance.”
Don’t forget your flu shot?
PAGE 6 PAGE 7

Research News
Second oral treatment
for mS approved
(Adapted from the MS Australia Position Statement)
Australian Neurologists and MS
patient’s can now access another
treatment option, with recent
Therapeutic Goods Administration
(TGA) approval and release of the
second oral medication Gilenya
(formally known as Fingolimod)
by Novartis. This follows that of
Movectro in late 2010.
Robert Hubbard, President of
MS Australia states “We are very
pleased there is now another oral
medication available to people with
MS. This new medication provides
another option for the treatment of
MS to add to the growing range of
oral and injectable MS treatments.”
Whilst this new medication has
TGA approval, we look forward to
it being listed on the subsidised
Pharmaceutical Benefit Scheme
(PBS), making it affordable.
Any step forward in safe treatment
options for the often debilitating
disease that is MS, is fully supported
by MS Australia and MS Research
Australia (MSRA). Our objective
remains to pursue research,
through MSRA, that will lead to the
prevention of MS, to further slow
disease progression and ultimately
to finding a cure.
Please note that whilst the new oral
medications may assist in improving
the lives of many, they may not suit
all people with the disease. Also,
given the risk profile of any new
treatment, including these oral
medications, consultation with a
neurologist is essential.
Note: MS Australia does not recommend
any specific treatments for
MS. The choice of therapy is a matter
for discussion with your neurologist
or other specialist healthcare
professional.
Productivity commission releases draft
rePort into disability care and suPPort
The Commission was asked to
examine the feasibility, costs and
benefits of replacing the current
system of disability services with
a new arrangement that provides
essential care and support for all
Australians in the event of significant
disability.
The Commission is proposing two
schemes. The largest, the National
Disability Insurance Scheme, would
be like Medicare, in that all Australians
would know that they or their families
would get long-term care and support
if they acquired a significant disability.
A second much smaller scheme
would cover people’s lifetime care
and support needs if they acquired a
catastrophic injury from any accident.
The costs are manageable and
justified when taking into account
Australia’s wealth, economic
growth, and the state of the
current arrangements. The current
arrangements are not sustainable
because informal carers — the main
source of support — are straining
to cope in the rationed system.
Increasingly, they have to transfer care
to the taxpayer-funded formal system
— creating extra funding pressures on
support for informal carers — and a
system-wide ‘death spiral’.
The Commission has outlined in detail
how to practically manage these, and
other issues.
The cost estimates in the report
are preliminary and have a wide
range, given the uncertainties. The
Commission will be undertaking
further analysis as more data becomes
available.
The draft report is available at:
http://www.pc.gov.au/projects/
inquiry/disability-support/draft and
comment is invited.
Using Mobility Aids on Transperth’s Public Transport System –
Effective December 2010
Transperth is committed to providing
accessible transport options to all
Western Australians. As part of
this commitment, mobility aids
meeting Transperth specifications
are welcome on the public transport
system.
Transperth’s trains, ferries and
new buses have been designed to
exceed the national disability access
standards.
It is important to ensure customers
and organisation members are
aware of the specifications regarding
mobility aid dimensions, stability
and manoeuvrability criteria set
by Transperth before purchasing a
mobility aid. To improve awareness
Your mobility aid needs to:
Fit within an allocated space of 1300mm by 800mm;
Be no more than 750mm wide at a height 300mm above the
ground;
Weigh less than 300kg including the aid, occupant and
assistant (if applicable) when using a ramp or other boarding
devices.
Stability
Your mobility aid needs to:
Be able to move in the direction determined by the transport
operator; and
Have effective braking systems to maintain stability.
of the Transperth specifications, the
‘Using Mobility Aids on Transperth’s
Public Transport’ brochure was
revised at the end of 2010.
Customer service staff are available
upon request at any train station
to assist passengers accessing the
Transperth network. To book this
service call 1800 800 022 at least
one hour ahead of your journey.
For more information on mobility
aids on the Transperth system, or
for any other information, visit
the Transperth website :
transperth.wa.gov.au
or phone the InfoLine on 13 62 13
(TTY: 9428 1999, TIS: 13 40 50).
Mobility aid
diMensions
Manoeuvrability
To board trains, buses and ferries your mobility aid should
be able to:
Turn 180 degrees within an area 2070mm by 1540mm;
Cross a horizontal gap up to 50mm wide;
Mount a vertical rise (bump) up to 15mm;
Cross grating gaps up to 13mm wide and 150mm long;
Negotiate a 1:14 grade ramp unassisted;
Negotiate up to a 1:8 grade where the ramp is less than
1520mm; and
Negotiate a 1:4 grade ramp with assistance.
Passengers accessing pedestrian level crossings will require
a mobility aid capable of crossing a gap up to 75mm wide.
PAGE 8 PAGE 9

Assistive Technology for People with MS
COMPUTER
ACCESS
“We are all equal behind a computer”.
I really like this saying and it is so true.
With today’s technology the world of
computer technology is open to the
majority of the community, through a
range of accessibility options.
All too often people seem to think that
they are unable to learn new tasks or
their disability prohibits them from
accessing a computer. This is just not
true, and the old saying where there is
a will there is a way is all you need.
Computers are used by people for so
many things these days:
Communication
Social networking
Shopping
Banking
Paying bills
Education
And many more.
The options for making computer
access easier can be as low tech as
using the functions already available
on your computer ie, magnifying the
text so you can see it better, using an
on screen keyboard with the mouse
instead of the usual keyboard, putting
on the sticky keys option so that when
doing control alt delete you can do
them separately, rather than needing
to hold them down all at once, if you
have a tremor you can put on the delay
so you don’t get so many repeats.
The website The Seniors Guide to
Computers is excellent for explaining
all the accessibility options available.
There is also a range of different mice
available i.e. track ball mouse, joy
By Robyn loxley O.T.
stick mouse, which can make it easier
to navigate the screen. For our more
disabled members there are options
such as the Integra Mouse which can
make the cursor move with very small
facial movements and the puff options
works the click. A programme called
the Smart Nav, allows the mouse to
be moved via an infra-red dot placed
on the members forehead to navigate
the screen and dwelling initiates the
click. There are a range of different
options for people who need to access
the computer through a switch. It is
important that you be assessed as to
what would be the best accessibility
option for you. Contact our O.T
department.
There is also a range of different
keyboards available, some with large
keys for those with isolation and visual
difficulties, some that can be used easily
by a single hand user, or a compact
keyboard that allows navigating the
keyboard when movement is limited
easier.
There is also a range of different software
that is available to assist computer
access ie Dragon Naturally Speaking
allows the computer to be operated
by voice activation, Jaws software is
for those with visual difficulties giving
magnification and auditory feedback,
VS communicator software allows
everything to be accessed via an on
screen keyboard, and has a scanning
option for switch users.
Again it is important that you be
assessed for the correct software to
suit your needs.
An assessment can be arranged at
the Independent Living Centre Tech
Centre for a trial of some equipment.
We are hoping in the near future to
have our own assessment clinic set up
where you can come and try what is
available. It may be possible to apply
for some funding through the Disability
Equipment Grant for access and
software, provided the member meets
the eligibility criteria.
At present there is no source for the
funding of computers. It is possible to
get one through TADWA at a relatively
low yearly cost. These are re-cycled
computers, and the cost includes
servicing. They will also do group or
individual training on the computer.
An exciting development from the MS
Society with support from Independent
Living Centre Tech Centre, is the setting
up of a touch screen computer, with
a range of accessibility options, for
our Hamilton Hill residents. There
are a number of members who have
previously never been able to access the
computer who now will be. Will keep
you posted on how this is developing.
If you would like any further information
on how to make accessing the computer
easier do not hesitate to contact me, on
9365 4831.
Dream it…
Win it…
LIVE IT!
The MS Mega Home Lottery has been a hugely successful
fundraiser for the MS Society of WA since it was first launched
in 2007. This year, we’re hoping for another record-breaking
result. Funds raised by the lottery will help build a new high
support accommodation facility in Bunbury, as well as expand
our services to Members.
Helping support and promote this year’s MS Mega Home
Lottery is Natalie Gruzlewski, the Channel 9 star of Getaway
and The Farmer Wants a Wife. “People with MS need all the
support they can get. The MS Society does a fantastic job and
this lottery is their biggest fundraising event, so to support it is an absolute privilege.”
During her recent visit to Perth, Natalie visited the MS Society’s respite and accommodation centre in Hamilton Hill,
where she met residents and staff. “The accommodation facility is brilliant. When you visit places like that it really
does bring home how much people with MS and other neurological conditions need it, and how the Society is doing
such a wonderful job of helping them” added Natalie.
With a luxurious seaside lifestyle up for grabs at the fully furnished $1.6 million Grand Prize show home in Hillarys,
this year’s MS Mega Home Lottery is bound to create a lot of interest. After all, who hasn’t dreamed of waking up in
the morning to the sounds and scent of our unique Indian Ocean coast? In addition, this year’s prize pool is valued
at over $2.3 million and is bigger and better than ever.
“This is the biggest Mega Home Lottery in the state’s history with 2,043 prizes up for grabs and every ticket has a 1
in 25 chance of winning. Ticket numbers are limited and last year’s lottery sold out early, so my advice is to secure
your tickets sooner rather than later to avoid the disappointment of missing out altogether” said Marcus Stafford,
CEO of MSWA.
Most importantly, all proceeds help us to support West Australians living with MS, so everyone’s a winner!
take a chance in this life changing lottery – your dreams could become a reality!
Take a Bow
We are proud to announce that the MS Society’s first-ever Christmas
pantomime Puss in Boots was close to a sell-out. With 5040 happy
young theatre goers filling the Playhouse Theatre, it was the highestselling
youth theatre event in Western Australia.
The production, featuring live music and a pro-am cast, was the second
theatrically-based fundraising initiative in the MSWA portfolio and
was aimed specifically at children and their families. Based on the
classic children’s book by Charles Perrault, the show was infused
with new energy by the talented performers, with plenty of
humour thrown in for good measure!
In addition to a number of glowing reviews, the pantomime
also generated a great deal of media interest, further raising
the profile of the MS Society’s work. The West Australian
reported that ‘it was all perfectly targeted for the kids in the
audience and they responded sensationally’. A happy audience
and a great result for our members – now that deserves a
standing ovation!
PAGE 10 PAGE 11

Sunday april 3rd
monday 23rd may
wedneSday 25th may
Sunday 29th may
Save the Date
Karrinyup Rotary Fair
Robinson Reserve
With an animal farm, sideshow alley and face painting to entertain the kids and a wide
range of market and craft stalls for adults, the annual Karrinyup Rotary Community Fair
really has something for everyone. It is a perfect display of community participation,
with groups of all cultural backgrounds coming together to celebrate their art and raise
money for charitable organisations and projects.
As the major beneficiary of this year’s fundraising effort, the MS Society of WA will be
represented at the Fair, selling Mega Home Lottery and Multi-Choice Raffle tickets and
Entertainment Books.
Bosko will even make an appearance, so come on down and join in the fun!
CIAWA Members’ Charity Golf Day
West Australian Golf Club
Join us for a game of golf, 4 Ball Ambrose, at the West Australian Golf Club, Yokine.
Team and solo registrations are available and your registration fees include green fees,
light lunch, dinner and auction.
This event is being organised by the Caravan Industry Association WA with all funds raised
being donated to the MS Society of WA.
For more information, contact merle@caravanwa.com.au
World MS Day – Street Appeal
Central Park – Perth
The MS Society of WA will hold its annual MS Street Appeal to launch World MS Day on Wednesday
25th May 2011 in the Perth City CBD.
Since the Street Appeal’s inaugural year, $25,000 has been raised for Western Australians
living with MS. This phenomenal amount is all thanks to the generosity of the Perth public and
volunteers who bring along family and colleagues to volunteer at the event.
The Street Appeal runs from 7.30am to 2.30pm so if you can spare a few hours before work, during the day or at
lunchtime, we would love to hear from you. The more volunteers, the greater our voice, so everyone is welcome!
For more information, contact Co-ordinator of Volunteers, Suzanne Bradbury on 9365 4844 or
via suzanne.bradbury@mswa.org.au and help us Kiss Goodbye to MS.
StepUp for MS
Central Park – Perth
Taking place on Sunday 29th May 2011 at Perth’s tallest building, Central Park, Step Up
for MS is a unique vertical fun run open to people of all walks of life and fitness levels.
Join this unique event and feel the reward and exhilaration of climbing 1096 steps to the
top of Central Park whilst knowing you have helped make a difference to the thousands
of Western Australians living with multiple sclerosis.
For further event information, visit the website www.stepupforms.org.au or contact
Beppie Hulyk on 9365 4816 or by email beppie.hulyk@mswa.org.au
We urgently need volunteers for all our events.
If you want to help out and have fun at the same time,
please contact Suzanne on 9365 4844
Every Woman Expo
Convention Centre
The Brownes Every Woman Expo has everything a woman could want all in one
place. A chance for women to be pampered, empowered and enlightened like
never before. There is the opportunity to touch, smell, taste, hear and discover
the latest in cosmetics, fashion, health and beauty, wine and food.
As the partnered charity for this year, the MS Society will be on-hand selling
raffle tickets and entertainment books. Make sure you visit us at the IGA Celebrity kitchen and sample some delicious
food cooked by some well-known Perth identities.
www.everywoman.exibit.com.au/home
Dinner Auction
Burswood Hotel
Guests will have the opportunity to bid on a wide range of items from one-off
experiences, to sports memorabilia, beauty products, jewellery, art pieces and
travel packages. Thanks to a healthy level of competition from our generous
attendees last year, a considerable amount of money was raised for people
living with MS.
If you would like to attend this not-to-be-missed event or donate an item to
be auctioned on the night, contact Events Co-ordinator, Beppie Hulyk on 9365
4816 or via email beppie.hulyk@mswa.org.au
Swim for MS
Melville Aquatic Centre
Swim for MS is an amateur swimming event where teams ‘compete’ to swim the
longest distance in a set 12-hour period. Teams of no more than 12 people must
have one swimmer in the water for the duration of the 12 hours. As Swim for
MS is a fundraising event, points are also awarded for funds raised. The winner
is determined by combining each team’s fundraising tally and kilometers swum
during the event.
This event is being run in conjunction with the Rotary Club of Attadale and we thank them for their support. If your
school or club would like information on how to run a Swim for MS please contact Jenny Saibu on 9365 4895.
For further event information, visit the website www.swimforms.org.au
or contact Jenny Saibu on 9365 4895 or via email jenny.saibu@mswa.org.au
Ocean Ride for MS
Fremantle to Hillarys
This unique event is unlike any other bike ride in Perth! Riders are given the
option of a 30km or 50km ride from Fremantle to Hillarys, taking in our beautiful
coastline. A family-friendly 15km ride utilising the pathways from City Beach to
Hillarys will be introduced in 2011.
For further information, visit the website www.oceanrideforms.org.au or
contact Beppie Hulyk on 9365 4816 or via email beppie.hulyk@mswa.org.au
Sunday 23rd october Sunday 25th September
thurSday 28th july
24th - 26th june

Health and Wellb eing Health and Wellb eing
Counsellor/Peer Support Co-ordinator
By Cate litjens
Recent world events and particularly natural disasters in Australia have been well
televised and this media coverage can add to a general increase in anxiety. This
edition of health and wellbeing has timely tips on anxiety and a good night’s sleep.
We have a new section “Ask the Counsellors” so please email cate.litjens@mswa.
org.au if you have questions related to living well with MS. Please note that not all
questions may be published however if you have any particular concerns please
phone for a counselling appointment on 9365 4811.
12 Tips For
Overcoming Anxiety
By Remez Sasson
Anxiety in various forms and degrees seems to be a wide spread problem, affecting people
of all ages and in every country.
If you are prone to anxiety you have two options:
A) Give in to it.
B) Learn to overcome it.
By giving in you will continue to suffer and feel unhappy, stressed and anxious. It is far better
to learn to overcome anxiety or at least reduce its power.
Anxiety just wastes your time and energy and weakens you mentally and physically. You help
no one and don’t solve any problem by being anxious. Our planet will go on revolving, even if you stop worrying and being
anxious. Always know you have a choice - to give in to anxiety, or try to overcome anxiety, at least partially.
Here are 12 tips for alleviating and overcoming anxiety:
1. Lack of control over your thoughts strengthens your anxiety. As negative thoughts get stronger and stronger, your anxiety
gets stronger. You need to learn to control your thoughts.
2. Feelings and emotions fuel and strengthen anxiety. You need to learn some self discipline and control over your feelings,
and you also need to develop emotional and mental detachment.
3. When you go to bed at night, and first thing when you wake up in the morning, think about the good things that are
happening to you. There are always some good things happening, even if small and insignificant.
4. Start the day with several minutes of positive affirmations. Tell yourself how you would like your day to be. Use positive,
cheering and motivating words.
5. Be busy, do something. By doing something you keep your mind off your anxiety. When you wake up in the morning start
doing something right away, and keep busy all day. Cleaning the house, washing the dishes or working in your garden,
reading, studying, meditating or exercising your body can help you keep your mind away from anxiety. Just sitting around
and thinking about your problems and worries won’t make them go away.
6. Set a goal and work everyday to achieve it. This action will direct your thoughts and feelings away from worries and
anxieties, toward something more positive.
7. Talk about your anxieties to someone you trust. Talking about your anxieties and feelings often alleviate them and put
them in the right proportions, provided you talk objectively, and with a real desire to reduce or get rid of your anxiety.
8. Exercising is a good way to keep from letting your fears overwhelm you. You can walk, do yoga or aerobics or any other
sport.
9. Find reasons to laugh. This will bring light and happiness into your life and drive anxiety away. Watch comedies, be with
happy and amusing friends or read something that makes you laugh.
10. Use positive words in your conversation and in your inner talk.
11. Affirm and visualize positive situations and events. Visualize a happy and positive solution to your problems.
12. If watching the news fills you with anxiety - turn off the TV! Limit the time you watch the news, and don’t watch anything
that may upset you before you go to bed.
www.successconsciousness.com
Multiple sclerosis - sexual issues
Multiple sclerosis (MS) is a disease of the central nervous system that can affect the brain, spinal cord and optic nerves. The disease most
commonly affects young Caucasian females living in temperate regions of the world. The cause of MS is not known although genetic and
environmental factors are involved. The two major forms of MS are ‘relapsing-remitting’ and ‘progressive’. There is no cure, but there are
treatments available that can modify the course of the disease and ease some of the symptoms.
A person with MS may be concerned about a number of sexual issues including function, fertility and pregnancy. It should be remembered
that sexual problems are common, whether a person has MS or not. Seek professional counselling for further information and advice.
Changes in relationships
A person with MS may struggle to come to terms with their disease. They might fear for their future or suffer from low self-esteem
because of the physical changes they are experiencing. Their loved ones will also be emotionally affected, trying to deal with the diagnosis
and its ramifications.
Stress, depression and anxiety can have a negative impact on relationships by closing the lines of communication. The natural inclination
when depressed is to withdraw from others, but this is a time when open and frank discussion is vital.
The person with MS and their partner need to talk about the impact the disease is having on them and what changes might have to be
accommodated in the future. For example, the person with MS may eventually be limited to working from home, or perhaps not working
at all, which could put financial strain on the relationship. Other issues to consider include sexuality and family planning.
Problems with sexual arousal
MS is a variable disease that can target virtually any part of the nervous system. The nerves servicing the reproductive organs can be
impaired, which leads to changes in sexual functioning. Slowed arousal time, reduced libido or desire and altered orgasmic response are
not uncommon experiences. Fatigue also dampens sexual desire.
Many people with MS struggle with feelings of depression. This can affect the quality of their close relationships and cause sex drive to
dwindle. Open and honest communication is vital. Professional counselling and therapy may be necessary to help the couple come to
terms with the challenges of MS.
Erectile dysfunction can be treated
Some men with MS may experience erectile dysfunction, which is the inability to achieve or maintain an
erection sufficient for sexual intercourse. This may be caused by the disease itself, side effects of certain
drug therapies or psychological problems (such as depression). Treatments can include counselling or the
use of medications, which can be taken orally or injected or via mechanical devices such as vacuum pumps
and penile implants.
Impact of other MS symptoms on sexuality
People with MS may experience a variety of symptoms which can negatively affect sexuality. Such symptoms may include fatigue, heat
intolerance, spasms and spasticity, pain or changes in sensation, bladder and bowel changes and cognitive problems with attention and
concentration. Also, some medications can impair sexuality and the sexual response.
Appropriate assessment and management of these symptoms may help improve the overall feeling of sexuality, wellbeing and physical
sexual activity. A satisfying sexual relationship is much more than just penis-in-vagina sex. There are variations of lovemaking that the
couple can explore together, such as oral sex, mutual masturbation and the use of marital aids.
Fertility and family planning
MS doesn’t affect fertility. Contraception should be practised (by either men or women) if the couple want to avoid pregnancy. Potential
problems that need to be discussed when planning for a family include the partner’s disease progression and whether they will feel
physically capable of dealing with the demands of a child, both in the short term and in the years to come.
Genetic susceptibility
MS is not an inherited disease, but research suggests that genetic factors are involved. MS is far more common in people
of Northern European ancestry. Ten to fifteen per cent of people with MS have a relative with the disease, but this may be a
grandparent, an aunt, an uncle or a cousin. A child of a person with MS has a very small risk, around three to five per cent, of
developing MS.
While genetic factors are important, they alone do not account for the development of MS – other, yet to be determined,
environmental factors are also thought to play a part.
PAGE 14 PAGE 15

Health and Wellb eing Health and Wellb eing
Pregnancy considerations
For a woman with MS, pregnancy doesn’t affect
the long-term course of the disease. Many women
with MS find their attacks are less frequent during
pregnancy. This is thought to be caused by pregnancy
hormones dampening the activity of the immune
system. However, most women find that MS relapses
(slips back) or attacks are around two to three times
more common than usual in the first six months after
childbirth.
Child care assistance, either voluntary (from friends
and family) or paid (babysitters and creches), is
strongly recommended. MS doesn’t influence childbirth or breastfeeding ability. However, if the woman is on an immunotherapy
program, pregnancy and breastfeeding are not recommended.
Some drugs can be harmful to a developing baby. Be guided by your doctor.
Where to get help
• Your doctor
• Neurologist
• Sexual therapist
• Family Planning Victoria Tel. (03) 9257 0100 or Freecall 1800 013 952
• MS Australia-ACT/NSW/VIC Tel. (03) 9845 2700 or Freecall MS Connect Tel. 1800 042 138 or
email: msconnect@msaustralia.org.au
Things to remember
• MS is an incurable disease of the central nervous system that can affect the brain, spinal cord and optic nerves.
• A person with MS may be concerned about a number of sexual issues including function, fertility and pregnancy.
• Pregnancy for a woman with MS doesn’t affect the long-term course of the disease.
This page has been produced in consultation with, and approved by: MS Australia
For Your Interest
The website www.MyMS.com.au is one man’s straightforward and
light-hearted overview of his experience of being diagnosed with MS.
(Please note: the views expressed on this site are not necessarily the
views of the Society’s staff, advisors, Directors or officers.)
Q. I struggle with thoughts of “what if?” most days
and find it hard to cope with the unpredictable
nature of MS. I find it hard to sleep because these
thoughts keep going around and around in my
head.
A. It can be difficult to stop your mind racing
once it has started so it may be helpful to make
a special time to consciously acknowledge these
thoughts and get them out of your head. One
technique is to set aside 5 minutes to stop, sit
down and write down any worries you have. Ask
yourself if you are able to control each situation
and if the answer is no then set the worry aside.
If the answer is yes write down some options
for reducing your concerns about that issue. It
is important that once your 5 minutes is up you
put the worries down and carry on with your
day. This does not mean worries will not pop
into your head at others times, however you can
tell yourself “I will think about that during my 5
minutes of worry time.” With practice and routine
you will notice less anxiety about the future and
be living more fully in the present.
Create a relaxing bedtime routine. Give your self time
to get ready for bed slowly. Savour the moments of
winding down as you wash your face, brush your teeth,
and change into your bed clothes. You can use aroma
oils, soft music – be creative! If spirituality is important to
you, include a prayer.
1. Keep your bedroom cool, quiet, and dark. (Usually a
cool room promotes sleep, but you will have difficulty
sleeping if you feel cold, so experiment. If your feet
are cold in winter, warm them up before bed!)
2. Drink a cup of warm milk (you can add nutmeg for
its sleep inducing properties) or a relaxing tea, like
chamomile.
3. Massage your feet, especially with warm oil, right
before bed - it’s very relaxing.
4. Stretch a bit before you lie down. You can literally
stretch out some of the “kinks” and tension of the day.
5. Stretching makes some people more energetic and
some more sleepy, so experiment and find out what
works for you. Don’t overdo it – stretch just enough
to help you relax.
Ask the Counsellors
Q. Since being diagnosed with MS I feel lost and
am not sure who I am anymore. I want to know if
I will ever feel like myself again.
A. During times of change it is not unusual to feel
a loss of identity. It may be necessary to make
time to reconnect with your strengths and skills
from before your diagnosis. You may try writing
a list or making a collage of those things that are
important to you, that you are skilled at and if
you are struggling to think of things ask friends
and family what they see as your strengths.
Working with a counsellor may also assist in this
process. Rediscovering your interests allows you
to make new goals and work toward them by
expanding on old skills or seeking ways to learn
or experience new ones.
Tips for a Good NiGhT’s sleep
6. Take a hot bath. A hot bath can be extremely relaxing.
Light some candles. Add relaxing aroma oil, such as
lavender oil, to the water. Luxuriate!
7. Once you are in bed, listen to relaxing music or a
relaxation or sleep CD to help you shift gears and
relax into sleep.
If trying these tips at bedtime doesn’t help you relax into
sleep, you may need to make some lifestyle changes for
a more long term solution
From: www.heartofhealing.net
PAGE 16 PAGE 17

Life Goes O n
When I talk at the newly diagnosed
seminars, I share my experiences
with MS; how I have managed to
juggle work, family and the illness.
Everyone’s MS is different and I stress
this fact; there is no right or wrong
way in dealing with MS or any illness
for that matter. However, everyone
needs to find their own way.
Below are some questions that have been
asked of me in the past and I will share with
you how I dealt with them. Please note that
these are my personal experiences and may
not suit everyone. You must do what is best
for you.
How did you feel when you were told you
had MS? I was shocked but also a little
relieved that I finally knew what was wrong
with me and that it wasn’t a brain tumor or
a figment of my imagination.
Did you go through the stages of grief?
Oh boy, did I ever! I even went through
stages that I didn’t know existed. The basic
stages I went through were Shock, Denial,
Fear, Anger, Bargaining, Frustration, Guilt,
Depression to finally Acceptance and
Coping. Most people will go through some
or all of these steps to some degree.
Are you on any treatment and if so how
did you react emotionally when you had to
start? I am on Betaferon injections. It took
me 12 months to agree to start them as I
thought, if I start, then my MS is real. My
first trip to the pharmacist to collect my box
of Betaferon was very confronting. I was not
prepared for such a large item. I was scared.
Are you on any special diet or exercise
program? I eat a balanced diet and still enjoy
a glass of wine and a nice box of chocolates.
If you want any information about diet, the
MS Society has a guidelines booklet. Speak
to one of the nurses who are more than
happy to discuss this in detail with you.
I want to tell my children but not sure how
they will react. Did you tell your children
and how did you do it? This is a very personal
choice and how you tell them depends on
the age of your children. I have a very open
relationship with my children and they
by Joanna Fazzalari
knew something was wrong with mummy
before the diagnosis. Their ages were 1, 5
and 8 years old at the time. I sat them down
and explained to them in age appropriate
information what was going on. I let them
process the news & informed them that
they can return any time with questions &
concerns and that they are free to express
their emotions too. The only question they
asked me was if I was going to die. NO I am
not. They were happy with that. The MS
Society has a child’s information booklet
which I gave my children to read. It explains
a little more about MS with crosswords and
games without bombarding them with too
much technical information.
How did you tell your friends? Some
people may not want anyone to know they
have MS – again this is a personal choice. I
decided to share my diagnosis. I got mixed
reactions when I told people. My closest
friends and I got drunk and yelled and cried
when I told them. Others thought I had the
plague. Some felt sorry for me and over
compensated by continually being in my
face trying to help while others said I looked
fine so what’s the problem. But most of my
friends asked if there was anything they
could do. They try to give well meaning
advice on new treatments, therapies and
the latest cure that they just read about. I
know their intentions are good and that I
am in their thoughts.
How did family react? I actually told my
husband over the phone while sitting in the
neurologist’s car park. He raced home to
try to ‘FIX’ the problem - when he couldn’t
he had his own grieving process to deal
with. My mum blamed herself and wished
she could take it from me. She is always
available if I need her and she would be
on the first plane to get to me. My family
benefited from knowing what to expect and
what they can do to support me in my times
of need. Other family members reacted the
same as my friends did.
I’ve heard of these websites that claim they
have a cure. Do you know about them and
have you tried any? Be very careful about
what you read on the internet, especially
if they are asking for hundreds of dollars.
There are many
so called cures
out there from
Goat Serum
to Snake Oil
that targets
the emotions of
those looking for a cure. There are
many alternative treatments that can help
relieve symptoms, for example massage,
acupuncture, reflexology, meditation to
name just a few. These may help with
symptoms but are not cures.
I want to know everything I can about MS.
Where do I start? The best place is the MS
Society. Speak to one of the nurses who are
trained in dealing with MS.
My doctor doesn’t listen to me and says it
is all in my head. What should I do? Frankly,
find another doctor. There is nothing
wrong with doctor shopping to find the
one suited to you. Treat it as an interview,
ask questions and if you are not happy, see
someone else. It is very important to have a
good medical relationship. My doctor, and
even my dentist, has researched MS a lot
more because of me.
I am so depressed; it is so hard all the time.
Will I get over this? At the beginning it is
hard and I felt so alone, so to help me get
through this I spoke to a counsellor which
helped me enormously. The MS Society
have some wonderful counsellors who
know the ins and outs of MS and are more
than happy to sit down and talk to you.
How have you changed your life? It’s funny,
but I am busier now than I have ever been. I
do know my limits even though I continually
push them, and I know when to stop and
say NO. This is very important. I think the
secret is to be organised and delegate. For
me to continue working, I had to become
organised and set up a roster for my kids, so
they too can help out at times.
Shitake Mushroom, Vegetable
And Barley Soup
Wheat, dairy free: Shitake mushrooms strengthen, detoxify
and restore. Renowned as immune boosters with antiviral
and antitumour properties, they are rich in vitamin D, B12
and protein. Barley has a wonderfully soluble fibre and
is rich in minerals such as magnesium. It strengthens the
intestines and blood, benefits the gall bladder and nerves.
Ingredients:
• 8 dried shitake mushrooms
• 1/2 cup barley (soaked overnight in 3 cups water
with 1 teaspoon yoghurt, whey or buttermilk)
• 1 x 5 cm piece kombu sea vegetable
• 15 ml tamari
• 1/4 teaspoon dried thyme
• 7 - 8 cups stock or water
• 2 tablespoons extra virgin olive oil
• 1 medium onion - finely diced
• 2 cloves garlic - finely diced/ crushed
• 2 - 3 sprigs fresh thyme, leaves only
• pinch dried basil
• sea salt and freshly ground black pepper to taste
• 2 medium size carrots, skins on - finely diced
• 1/2 medium size orange sweet potato, peeled -
finely diced
• 1 small - medium swede, peeled - finely diced
• 1 medium or 2 small parsnip - peeled, woody centre
removed if very large or old - finely diced
• 1 stick celery - finely diced
• Handful of parsley - finely chopped
• Mirrin - only if required, approx 1 - 2 teaspoons
Recipes
Method:
Add the crumbled (or roughly broken) mushrooms,
drained barley, kombu, tamari, dried thyme and 7 cups
stock or water to 24 or 26cm pot. Partly cover and cook
over a simmer for 20 mins.
Add the oil, onion, garlic, fresh thyme, dried basil, salt
and pepper to a frying pan and cook over a gentle
heat for approx 5 - 8 mins, or until only slightly blushed
with colour. Add this to the soup together with all the
vegetables. Partly cover and cook for 45 mins over a
gentle simmer. Check if more liquid is required after
this time, then cook for another 15 mins or until the
barley is soft. Check for taste - you may need a touch
of mirrin (especially if you have no parsnip in the soup).
Add the parsley and serve.
MAKING THIS SOUP WITH LAMB / MUTTON SHANKS:
Both barley and lamb are said to enhance Qi, the
lifeforce and initiator of all motion and heat. Lamb is
also high in B vitamins such as niacin, riboflavin and B12
- all essential for good health. Replace the mushrooms
with 2 mutton shanks, and omit the kombu. Addition: 1
teaspoon white wine or apple cider vinegar
Add the shanks to the soup pot and cook over a very,
very gentle heat until some of the fat renders out. Add
the onion, garlic, fresh thyme, dried basil, salt and
pepper to the pot and cook over a very gentle heat
for approx 10 mins - do not allow them to brown or
burn, but to very lightly colour. Add 7 cups stock, wine,
partly cover and cook over a moderate to gentle heat
for approx 1 hour. Remove any scum. Add the drained
barley and vegetables, partly cover and cook at a gentle
simmer for 45 mins. Check if extra liquid is required and
cook until the barley is soft, another 10 - 15 mins.
Remove the shanks and cut meat from bone, add this
back to the soup and discard the bones. Add parsley,
check for taste (salt and pepper) and serve.
Compliments of Jude Blereau:
http://www.wholefoodcooking.com.au/
PAGE 18 PAGE 19

T
R
A
V
E
L
S
I
N
J
A
P
A
N
By
Angie
Wallace
Last year my husband John and I visited Japan for the sixth time.
Our son Andrew, a permanent resident and his lovely Japanese
wife, Yocchan, have a daughter, two-year old Emily. Andrew and
Yocchan are both High School English teachers in the coastal city of
Kochi, on Japan’s fourth largest island, Shikoku. Kochi, population
300,000, is very rural, yet mountainous. It was not uncommon for
us to go a whole week without seeing another “gaigin” – foreigner
(other than Andrew’s friends)! And we love it that way.
For six weeks we house-sat for an American surfer friend of Andrew’s.
A small van came with the house, allowing us to explore the
picturesque countryside - rice paddies, temples, shrines, traditional
craftsmen and more rice paddies. Because Andrew lives on the side
of a mountain, with 63
arduous steps up to his
house, visiting him was a challenge for me as I
travelled mainly in a wheelchair. I was pushed
up a steep, slippery, crumbling goat track for a
couple of visits but refused to go back down in
the wheelchair. The only option was the steps.
Fifteen minutes later with a walking stick, a
couple of assistants and several breath-catching
stops I emerged at the bottom, feeling rather
triumphant!
After several visits to Shikoku over the years, we were comfortable travelling around on
our own, even though very little English is spoken and our Japanese is very limited. We’ve
always found it useful to learn a handful of expressions or greetings (along with a generous
use of smiles and mime!). My latest useful phrase on this trip - “Sumimasen, toire wa doko
desu ka?” “Excuse me! Where is the nearest toilet?” It came in very handy. All over the
country we have learned that standing with a map in our
hands and a lost look on our faces usually had a kind local
offering help. With only a few words exchanged, the
Samaritan pointed us in the right direction and often took
us there in person.
After spending wonderful, quality time with our family,
especially little Emily, it was time to say goodbye and head
off on our own for another 2 ½ weeks to Hiroshima, Kyoto,
Nara, Tokyo and the Alps, home of the ‘98 Winter Olympics.
Negotiating the trams, trains and buses was very easy – staff
instantly appeared to lift me in my wheelchair onto or off
transport. The Japanese are very helpful towards people in
wheelchairs and will happily move out of the way. At one
crowded bus stop at Kyoto’s magnificent Heian Shrine, a
bus controller re-routed a bus from another stop. At least
8 people got off this bus to make room for us then waited
for the next bus to come along. Everyone bowed and said
“Konnichiwa!” We felt like royalty!
A Japan Rail Pass, bought before we left Australia is a very
inexpensive way to see the country. Armed with our 14day
passes we travelled free on all manner of JR transport
- trams, buses and trains. Travelling on the JR Shinkansen
(Bullet trains) is highly recommended. You most definitely
will feel special when you travel in a wheelchair on these
very fast trains. From the moment we showed our tickets
at the station we were assigned a crew member to take
us through the huge station, up and down lifts to our
platform. The crew member then waited with us until the train arrived, helped us board
and handed us over to train crew. At out destination yet another platform crewman was
there to greet us and take us to our exit. Yes, travel in Japan is very smooth and efficient.
Trains, famously, are always on time and super clean. And NO graffiti!! Disabled toilets are
plentiful and spotlessly clean.
Eating out is a way of life and very inexpensive if you are prepared to get away from the
usual tourist traps. Most cafés and restaurants have plastic food on display in the windows
so you choose your meal before entering. Then with pictures to match in the menus,
ordering is easy. Service is exemplary and nothing is too much trouble for staff. They
would cheerfully wheel me to a table; re-arrange the setup or other patrons – anything to
accommodate this tourist. And no tipping for
anything in Japan! A service charge of 10% is
built-in.
Part of Japan National Tourist Organisation,
SGGG (Systemized Goodwill Guide Group)
offers free, english-speaking, volunteer guides
throughout the country. We had amazing
experiences using these knowledgeable guides
in cities like Nara. Arrange a guide through
your hotel or at the local Tourist Information
Centre at most train stations.
Throughout this trip we enjoyed the spectacular
cherry blossoms and festivals. Next trip, which
is already in the pipeline, will be the autumn
colours! Can’t wait!
When visiting Japan do get off the beaten track
and go down the little alleyways and byways.
Be prepared to try something a little different
to eat or visit an out-of-the-way temple... and
never be afraid to ask for help.
PAGE 20 PAGE 21

travel inSurance information.
Sue Shapland
I have recently received several enquiries about travel insurance for Members.
An excerpt from a “Travelling with MS Brochure” produced by MS nurses in Victoria states:
● Make sure that you organise appropriate and comprehensive insurance.
● Different types of insurance cover are available, including medical cover, personal liability, baggage
loss, travel delays and cancellation or curtailment. Match your travel plans and destinations with the
insurance cover you need and check the details.
● When buying insurance consider options other than your travel agent. It is often cheaper to contact
insurance companies direct or use services such as financial planners. (This can save you up to
40%).
● Remember in most cases MS is considered a pre- existing illness and you need to complete a
medical assessment form. This is evaluated by the insurance company to decide if they will cover
you and under what conditions. Check out a few companies & get the best deal!
TIP:-take a copy of the insurance policy for your MS Nurse or Neurologist to review before you sign it.
Remember MSWA has an affinity relationship with Graham Knight and Associates – an insurance broker.
Our Members get a discount and they source the policy quotes and potential insurers on your behalf.
Just ring (08) 9478 1933; their ad is in every Bulletin magazine.
by Narelle Taylor
That’s Life with Narelle
We had several days of hot weather, one daughter’s wedding, one daughter’s domestic
hic-cup, and the other daughter’s child-minding dilemma. Then, to top it all off, an
appointment for me at the Optometrist was made for a day that my carer was not
going to arrive in time to take me to.
I’m so easily derailed by hot weather and sometimes wonder if having other things
that I must attend to is good or not because they take my mind off the weather. I
worry if I’m attending to the other things, as well as usually considering that my
tactics are being inhibited by the flaming weather. This month my dance-card was
full and I fulfilled my chores systematically, ignoring that most niceties were being
sacrificed by me on the altar of expediency. The appointment with the Optometrist
was kept though.
She tested my vision, assured me that my macular and my cornea and cataract
conditions were fine, then said my ‘double vision’ needed to be dealt with by an Ophthalmologist. She turned to my ‘carer’
and asked “‘Does she have an Ophthalmologist?”
I snorted, “She can hear you.”
The girl who had driven me to the Optometrist had only known me a short while. She wouldn’t have known if I had an
Ophthalmologist or not. Did the Optometrist think I was not able to answer her by myself? I hate it when people do that.
Because I don’t walk doesn’t mean I don’t think or speak.
Anyway, I sorted that out.
The grandchildren were minded, the domestic hic-cup is no longer headlines and the wedding was fabulous for all involved.
The weather was still diabolical. Can a person get a visa to Utopia these days? I want one.
The grandchildren came to the wedding. They had starring roles. Milla was the flower-girl and Max bore the rings. I told
seven-year-old Max that his performance was great and that he looked really good. He said, “I know.”
A former-classmate of my daughter abstained from drinking and drove wedding guests home when requested. I remained
sober but didn’t drive because the screaming puts me off.
My best friend had had a gynecological dysfunction and rather than not attend the wedding, she borrowed a wheelchair from
me. (I have a fleet of ambulatory devices.) We had lovely interludes of conversations at the same eyelevel and neither of us
was at all uncomfortable about being reliant on wheels to get around.
Weddings are probably always feats of organization and this one was no different. Hot weather and disability did make a bit
of difference but it all worked out so well and will be a beautiful memory. Guests won’t recall the two wheelchairs in situ.
I really don’t think that anyone ever recalls them having been there. I don’t think anyone is ever conscious of them at the
time. Maybe if the bride or the celebrant was in one the guests would remember. It wasn’t the case at this wedding so they
won’t be recalled. By the end of the night, lots of guests could have used one anyway, but I wasn’t going to offer mine.
Child-minding is only a problem for the first dozen or so years of a child’s life. They can then be put into service to mind the
frail and aged. I don’t have long to wait. I’ll, no doubt, be seeing a lot more of the grandchildren in the near future.
Domestic hic-cups are only as volatile as the parties involved. It’s a wellknown
truth that if you don’t feed your chooks they’ll fly over the fence.
We’ve never had chooks. My children never observed their behavior. Some
life-skills have to be learnt in action.
Children do not arrive with an accompanying instruction manual so it’s up
to the parents to teach them what they know, to lead them by example and
try to make this ‘life’ business nice for all concerned.
Even people without MS, don’t like hot weather.
PAGE 22 PAGE 23

My Life, My Legacy
by Jill Keenan
As much as we might hate to admit it, we all have two ‘Things to do lists’. The first list, which
generally dominates our attention, is made up of those seemingly urgent yet mundane tasks
of everyday life. You know, pick up some milk, get a haircut. You get the picture.
The second list is full of much more consequential tasks, and yet somehow we’re a lot better
at procrastinating with that one. Sort out my superannuation, get a full health check, update
my will. How many years do we talk about these things before we get around to them?
As someone who has had MS for 12 years, I’ve spent a lot of time thinking about the future.
Wondering if, in my later years, I would be able to make those important decisions with a
clear head and a sense of purpose. Craving a sense of control over my life and my destiny, I decided I would finally tackle that last item
on the list and sort out my will.
So I made a quick phone call, had a pleasant cup of coffee with a lawyer and my husband and together we got my priorities in order. I
thought it would be too confronting but you know what? It gave me a huge sense of wellbeing.
My beloved family will be looked after, and they are very supportive of my decision to include a bequest to the MS Society of WA.
It gives me great satisfaction to know that I’ll be able to give something back to the Society that has helped me to get my life back,
through hydrotherapy, counselling and many other services.
So, now that this is sorted, I can go about my daily life, with all its mundane tasks, and when my time inevitably comes, my wishes
will be respectfully carried out. By sharing my personal experience with you, I hope to encourage people to think about how they can
make a difference, in this lifetime and beyond. Pick up the phone and take that first step – I can assure you, it will give a greater sense
of accomplishment than anything else on those to-do lists!
Hi everyone,
Some of you may already know me and I’m hoping to
meet many more of you in the coming weeks.
I’ve been part of the MS Society’s fundraising team for
over 3 years and have recently taken on a new role:
Communications and Gift Planning Manager. So
what do I do, exactly?
Well, among other things, I put together
various fundraising publications, including
MS Movers & Shakers, direct mail donor
campaigns and the West MS e-newsletter.
This means I’ll be looking for new and
innovative ways to communicate with our
supporters and working my hardest to
encourage them to donate some of their
hard-earned dollars to the most worthy
cause in our state – your MS Society. I’m also
here to help if people would like to
make a bequest or donation to
the society.
I’m very grateful to Jill Keenan for sharing her personal
experience with us all. In order to spread the word about
MSWA’s great work and the needs of our Members in
the most effective way possible, it’s important that I
hear your stories and learn about your personal journey
with MS. Everyone has a story to tell, and I’d love
to hear yours.
Please feel free to contact me anytime if
you’d like to make a financial contribution
or simply share your story. You can remain
anonymous if you prefer. And, do feel free
to come and say “hello” if you pop into
our Wilson building, I’d love to meet you.
Best wishes,
Jasmyn Hutin
Communications and Gift Planning Manager
jasmyn.hutin@mswa.org.au
08 9365 4837
Fern River Wedding
By Linda Kidd.
Fern River’s Communal room was turned into a wedding
venue in January when Kane Lewis and his partner
Sianne got married. They were so determined that Judy
(Kane’s mother) would be able to attend they asked to
hold it at her home, Fern River.
Judy was thrilled to be the mother of the groom in the
run up to the wedding. Her daughters brought her a
new outfit, and she looked so proud as she mingled with
the selected guests, very close relatives and friends.
The Communal Room, added in 2005, has been such a
bonus for Fern River providing much needed space for
many special occasions and now a wedding!!
Member Tim Johnson and his wife Diane spent 5 days
over Christmas at a lovely, restful chalet and would
like to share what they found with other Members.
“Ayr Sailean”, conveniently located mid way between
Denmark and Walpole and only 15 minutes from the
Tree Top Walk, is the ideal place for you to explore
this wonderful area of the state, or to simply relax.
The studio chalets of Ayr Sailean, set in amongst
granite boulders and native bush, have been designed
especially with country luxury in mind. The units
cater for the disabled, with full wheel chair access,
step to spa and shower seat. With beautiful views
they provide a quiet haven where you can get away
from it all.
The Chalets are designed to cater for 2 but can sleep
up to 4. Each unit has a queen bed and a foldaway sofa
NEWS FROM SOUTHSIDE
Ou treach
Three of our members have moved out of our area and
we are sad to see them go. Val has moved to Victoria to
live near her sons, Diana has moved to Donnybrook and
long-time member Cheryl is now living at the Fern River
Centre. All the best ladies! Welcome back to Judy, who
has rejoined Southside after an absence of over 8 years.
There have been big changes in the massage department.
Claire is working at Hamilton Hill on Fridays now (she is
still at Seabrooke House on Thursdays) and Inger has left
the MS Society after 2 years to pursue other ventures.
We miss you both! Meanwhile, Sussan, who has been
doing relief massage, is now our regular masseur on
Thursdays and Fridays. .
Ray is now our regular cook and coming up with some
wonderful meals, ably helped by Margaret who has
been in the kitchen here at Southside for more than 15
years. Love your sense of humour, Ray!
The hot weather has certainly been tough on all of us.
The fans and the air-conditioner have been having a real
workout, which is more than we can say for ourselves in
this heat. Bring on some rain!!
bed. These units are fully self contained and equipped,
having a 4 burner gas stove, convection microwave
oven, toaster, kettle, fridge / freezer, washer/dryer,
TV, DVD/Video unit and stereo unit. All you need to
bring is your food. A continental breakfast is supplied
for the first morning of your stay.
Tim wrote: We recommend Ayr Sailean because
Chalet One (the one we occupied) has a flat approach
from the carport, no lips entering, total accessibility
within the cottage, ample grab rails, an elevated
toilet, the bed was nearly level with my chair seat and
the shower has a good wide shower seat; I found no
problems with the chalet while the views over the cove
provided ample beauty without leaving the chalet.
http://www.ayrsailean.com
Email: info@ayrsailean.com
PAGE 24 PAGE 25

Ou treach
Bunbury Outreach
Jennifer Richards, Community Access Nurse
The year has started off and is busy for the group which
has relocated to 9 Ramsay Street, Bunbury, having
outgrown the Eaton Rec Centre. We now have dedicated
physiotherapy, massage and meeting areas. This is now
also the MS Nurses office where appointments can be
made for private consultations on 0408952363; please
note the office is not staffed full time so appointments
are essential.
Our wonderful Physiotherapist Alison is already busy
with assessments and program development; you can
make arrangements to see her by phoning 0449214748.
We are pleased to announce two new services for our
Bunbury Members; they are occupational therapy and
counselling. Letters will be sent to all Members advising
them on how they can access these services in the near
future.
We are busy organising guest speakers and looking at
activities that can be incorporated into our Wednesday
group meetings. Zumba for people with disabilities is
going to be demonstrated and the Continence Nurse
from WA Country Health Services has already visited
and given an overview of the service that she provides.
Please feel free to contact me on 0408952363 to
arrange an office or in-home consult.
Respite House
Helping Hands Make a Difference
November the 13th proved to be a unique and
wonderful evening, and also very profitable for the
Margaret Doody Respite House.
Guests were invited to attend an auction of stunning
quilts that were hand made by the “Helping Hands”
group of volunteers. Guided by world renowned quilter
and designer, Jan Mullen of Stargazey (www.stargazey.
com), these dedicated ladies donated endless hours
to make 36 very different patchwork quilts, along with
a variety of shopping bags., The auction was held in
Cottesloe and lead by Henry Willis of Gordon Davies
Real Estate in Dalkeith, who volunteered his time to
expertly extract many dollars out of the wallets of the
enthusiastic crowd. The amazing $25000 plus that was
raised is going to be used for the benefit of the residents
who stay at Margaret Doody House. We are extremely
grateful to Margot and Phil Downing for hosting and
organising the very enjoyable event, Greg Brindle for
donating the wine, the gifted Jan Mullen and the band
of energetic ladies who sewed and sewed and sewed
some more!.
It was a great night with a great result. A big thank you
goes to everyone involved and especially to the very
talented, very generous quilters.
by Suzanne Bradbury
Here we are, our first Bulletin
for 2011, the year has
certainly started out with
many disasters delivered by
Mother Nature. More
than ever we have seen amazing acts of bravery and
courage, often carried out by volunteers, ordinary
people performing extra ordinary acts of kindness to
people in need.
These wonderful people are everywhere in our
community, often not thinking that they can’t make a
real difference. In actual fact they just need a gentle
nudge, and some encouragement and support, to take
that first, often fragile step to embracing volunteering,
which can lead to many exciting opportunities in life. I
speak here from personal experience, looking back over
26 years of volunteering and the places in the world it
has taken me.
So how do we recruit new volunteers to our organisation?
There are Golden Rules that should be followed if we
want to attract the right people. Firstly your nonprofits
culture and work environment needs to be understood;
each organisation has a certain personality, demeanor
and philosophy. So we have to make a match between
the culture and the volunteer.
We have to make sure that our organisation is prepared
for volunteers, so that management and staff are
willing and able to support, appreciate and value them.
Placements, materials and a pleasant place for the
volunteer to carry out their work are also extremely
important.
Many of our employees are in contact with potential
volunteers every day, so they need to know about
the range of service opportunities available in our
organisation and refer those people on to me who
express an interest in volunteering.
There are three main types of effective recruitment:
Warm Body Recruitment, when you need a large body
of volunteers for a short period of time. This involves a
broad dissemination of information.
Targeted Recruitment. The targeted campaign requires
a carefully planned approach to a small audience.
Concentric Circles Recruitment. This type of recruitment
requires you to identify populations who are already in
direct or indirect contact with your organisation and
then to contact them with your recruitment message.
No matter which method we choose to use it must be
compelling, explaining why our organisation is worthy
Volu nteers
of a potential volunteer’s time. Our message needs to
be short, simple and direct, communicating the need
for the volunteer’s service and the good they can do.
We must stress the need of the community for the
service, but also delineate the benefits the volunteer
will receive. These include doing well, but there may be
skills and valuable experience the volunteer will gain.
I look forward to working with our wonderful volunteers,
new and old, again this year.
HELP IS ALWAYS AT HAND
Carers are often very good at looking after the needs
of others and not so good at looking after their own
physical and emotional health. As a result, Carers WA
was set up in order to help improve the lives of the
estimated 250 000 family Carers living in Western
Australia. Carers WA is a non-profit community based
organization whose role is to work in partnership with
carers, people with care and support needs, health
professionals, service providers, government and the
wider community.
So How Can They Help Me?
Carers WA offer a wide range of services including:
• Information and Resources about a variety of
topics (i.e. respite; finances; support services; home
help; legal issues etc) and a free Carers Support Kit
• Education and Training
• Counseling
• Time Out Social Support and Respite (i.e. short
breaks; social events etc)
• Advocacy and more
For more information, view their website at
www.carerswa.asn.au or contact them on
1300 CARERS (1300 227 377)
PAGE 26 PAGE 27

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