Autumn 2016 - The Multiple Sclerosis Society of Western Australia

Transcription

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T h e O f f i c i a l M a g a z i n e o f t h e M S S o c i e t y o f W A | m s w a . o rg . a u
MSWA CEO Marcus Stafford and Bunbury Mayor Gary Brennan (L)
at MSWA’s new Community and Health Services Centre in Bunbury
Autumn 2016
Healthy feet
NDIS trial site update
Tips for successful communication
South West regional round up
From the desk of the CEO
Inside | Autumn 2016
The Multiple Sclerosis
Society of WA (Inc.)
WILSON CENTRE
29 Parkhill Way
(08) 9365 4888
Fax
(08) 9451 4453
Freecall
1800 287 367
See Health Team Dept contacts on this page
GENERAL MANAGER – MEMBER SERVICES
Sue Shapland:
9365 4840
INDIVIDUAL OPTIONS
Manager Community Care Programs,
Gail Palmer:
9365 4851
OUTREACH GROUPS
Wilson Outreach (Mon-Thurs): 9365 4830
Beechboro Lodge (Mon, Fri):
9377 7800
Southside Outreach (Fri):
9592 9202
Bunbury Outreach (Wed):
9791 2472
Albany Outreach (Fri):
9841 6657
BUNBURY OFFICE
9 Ramsay Street
9791 2472
BUSSELTON OFFICE
1/21 Cammilleri Street 9754 2320
MARGARET DOODY RESPITE HOUSE
Manager, Chris Rush:
9385 9574
FERN RIVER ACCOMMODATION
Manager, Liz Stewart:
9356 2747
HAMILTON HILL ACCOMMODATION
Manager, Jayne O’Sullivan:
9331 5780
TREENDALE GARDENS RESPITE &
ACCOMMODATION
Manager, Linda Kidd:
9725 9209
Contact Us
If you would like to comment
on anything you read in this
Bulletin please email
[email protected]
or write to
MSWA, Locked Bag 2,
Bentley DC WA 6983
The Bulletin can also be viewed at
mswa.org.au/bulletin
Editorial Committee
Greg Brotherson (Editor), Marcus Stafford (CEO),
David Bugden, Sue Shapland, Ros Harman,
Libby Cassidy, Sandra Wallace, Narelle Taylor,
Leonie Wellington, Bhavna Jagtiani, and Dawn Burke.
The Editor welcomes unsolicited submissions.
All articles are subject to a reviewing process.
The views expressed are those of the Authors
and do not necessarily reflect the view of the
Society’s staff, advisors, Directors or officers.
2
From the desk of the CEO
3
A message from the General
Manager – Member Services
4
MSWA Camps for 2016 4
Letter from the Editor
5
Letters to the Editor 6
Bequests – Thank You
7
Round-up of research and
other items of interest
Member Services
Directory
Marcus Stafford
8-9
Healthy Feet 10
Our Health House 11
NDIS / NDIS My Way WA
Trial Sites Update - February 2016 12
MSWA leading the way for WA research 13
MSWA heads to Shenton Park 14
MS Mega Home Lottery 14
There’s an app for that! 15
Tips for successful communication 16
Zika Virus Alert 16
Shaping your own destiny 17
Shermar Moore 18
Outside
19
That’s life with Narelle 20
21
Volunteer update
Anytime Fitness Stadium Stair Race
22
22
Swimming for MS Walking in memory –
Rotary Team Challenge 2016 23
A night under the stars 23
South West regional round up 24-25
26
Wilson Outreach news Fern River - our 2015 in review 26
Southside Outreach news 27
News from Eastside and Northside
Outreach Groups at Beechboro Lodge 27
Albany Outreach news 27
NURSING Our nursing team is usually the first point of contact, after the neurologist,
for anyone diagnosed with multiple sclerosis. We’re committed to providing holistic support
so you have a greater understanding of what to expect from your condition.
Manager: Lou Hatter on 9365 4809
Hospital Liaison Nurse (S.C.G.H.): 9346 3333
Community Nurses: 9365 4812, 9365 4838, 9365 4870, 9387 4846 or 9365 4888
PHYSIOTHERAPY Physiotherapy aims to provide treatment interventions to develop and
maintain mobility and function. Our physiotherapists are experts in movement and function,
and work in partnership with Members to attain the highest possible level of independence.
Manager: Marilyn Sylvester on 9365 4837
Physiotherapy Office: 9365 4834
OCCUPATIONAL THERAPY Occupational therapists work with Members, and clients,
to enable them to continue their work and other interests for as long as possible, where they
may otherwise have been limited by their condition.
Manager: Sandra Wallace on 9365 4804
An occupational therapy contact can be reached on 9365 4888
COUNSELLING Some people need support to deal with the news that they have MS,
and the challenges that may present over time. Our qualified counsellors provide a safe
space for you to explore your concerns, in a safe and confidential environment.
Manager: Lisa Papas on 9365 4836
Support Counsellors: 9365 4808 or 9365 4811 Peer Support Program: 9365 4808
Welfare Officers & Funding Locators: 9365 4889 or 9365 4835
INDIVIDUAL OPTIONS We are able to supply limited in-home support such as
assistance with personal care for people with disability due to multiple sclerosis, to help
them remain in their homes. Care and supports are provided through a combination of
funding from the Disability Services Commission (DSC) and our own fundraising efforts.
We also manage DSC allocated individually funded care packages.
Contact us on 9365 4851 for more information.
“Opportunities don’t happen. You create them.”
Chris Grosser
Without a doubt, 2015 was the year of creating opportunities
here at the MS Society. Opportunities to bring us closer to our
vision of a world free from multiple sclerosis, and our purpose
of helping people living with MS to get the best out of life.
In the last Bulletin, I spoke to you about our plans to grow our
strategic footprint, fund local research and prepare ourselves
for the NDIS.
And if 2015 was the year of opportunities, 2016 is the year
of action!
In January this year, we announced the results of our inaugural
MSWA Research Funding Round. Out of our record $1.5
million contribution to MS research nationally, half a million
dollars was set aside to fund Western Australian researchers.
This money is not just our way of showing support for local
researchers. The research is of the highest quality and
fits within the global effort. In the long term, it is our aim
to financially support and grow the talent in WA so that we
become leaders in MS research in Australia and are at the
heart of the search for a cure.
The calibre of applicants was truly outstanding and as a
consequence we have committed almost one million dollars
to fund five local researchers for the next two years.
We don’t have the medication to completely stop MS yet
but we have ones to slow its progression, so every piece of
research undertaken is very important. Learn more about the
researchers and their work on page 13 of this Bulletin.
We then rounded off January with the official announcement
of our plans to build a new high support accommodation
facility at the site of the old Shenton Park Hospital.
The $2 million facility will offer people with disabilities
accommodation with a private bedroom, lounge, kitchen and
bathroom, so they have the best of both worlds – around the
clock care and a great place to call home.
The facility will be positioned in a fantastic location with good
public transport links and means family and friends will be
able to visit easily.
I’m thankful to the State Government for the opportunity to build
accommodation that meets the needs of our Members in Perth.
Finally, in February I headed down to Bunbury to check on the
progress of our current build and to meet with Mayor Gary
Brennan as he joined me in turning the first sod on our new
$1.5 million Community and Health Services Centre.
It was a significant occasion, one I’m glad Members and staff
in Bunbury could be a part of.
The Centre fills an important need in the South West as we’ve
outgrown our current Bunbury Outreach Centre and the
demand for our services continues to grow.
The purpose built Centre will be a one-stop shop for the 234
Members in the region, including their family and carers, who
will all be able to access a wide range of services.
It will also be ‘open for business’ for people with other
neurological conditions who are in receipt of NDIS funding.
It is exciting times for the Society and our Members and it’s
important to acknowledge at this juncture that it is thanks to
the public’s continued donations and support as well as the
Mega Home Lottery that we have been able to put these plans
in place to build the new facilities.
We’re proud of our leadership position but we’re by no means
resting on our laurels.
Our strategic footprint will continue to grow with funds already
being allocated for a high support accommodation facility in
Albany and the preliminary identification of suitable land in
the northern suburbs.
The team across WA is committed to building a bright
future for people living with multiple sclerosis and other
neurological conditions in Western Australia. Thank you
for allowing us to be part of your journey.
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
Autumn 2016 The MS Society of Western Australia
The MS Society of Western Australia Autumn 2016
3
A message from the General Manager
– Member Services Sue Shapland
“If you change the way you look at things,
the things you look at change.”
Wayne Dyer
As they say, one of the only constants in life is change!
Whilst change can be unsettling, it can also bring great
anticipation and excitement especially when the outcomes
will be for the better.
We are also progressing our plans for additional high
support accommodation units in both Shenton Park and the
northern suburbs, where we will also create a much needed
Services Centre.
The National Disability Insurance Scheme (NDIS) is one such
change. This change has been a long time coming and the
outcome will be more timely access to funded supports
for people living with disability. Greater equity of access to
funding will bring opportunities for more people to live a
better life. Mark Douglas, MSWA NDIS Operations Manager,
has provided another NDIS WA trial update on page 12 of
this Bulletin. We are still eagerly waiting to hear what the
WA timeline for the roll out will be and will keep you posted.
MSWA staff will be providing our Members with relevant
information and support to determine eligibility under the
NDIS and register for planning.
Last year we sought Member feedback regarding supports for
the newly diagnosed and peer support opportunities. We have
employed a Health Education and Peer Support Coordinator,
Sarah, who is already putting together the 2016 program.
This year will be another busy but rewarding year for MSWA
as we see more of our strategic plan come to life. We recently
attended a ceremonial turning of the sod at the site of our
Bunbury Community and Health Services Centre; what a pleasant
surprise to see the formwork already placed in readiness for
the pad to be poured. The Bunbury Outreach group has been
relocated twice since 2003 and each time has been for the
better, but never ideal. This new building will provide us with
a purpose designed and built Centre for our regional services.
Plans include a physiotherapy gym, large meeting areas, office
space and consulting rooms providing a much needed base for
the nursing and allied health staff working in the area. We will be
able to share the progress with you in the next Bulletin.
As you may be aware MSWA has made very significant
contributions, over $1 million annually, towards MS research
in Australia. This year we have allocated part of these funds
to five WA researchers to support their projects; read more
about this in this edition on page 13.
This year has started off with a few challenges. Our hearts went
out to those affected by the devastating January bushfires in
and around Yarloop and Harvey. Treendale Gardens was able
to help in a small way by providing shelter to some evacuees
whilst also preparing for possible evacuation.
Then there is the heatwave we have had to contend with!
I hope you have managed to remain cool and rested at night.
Please remember if you need any advice regarding
managing any aspects of your MS, or you want specific
information, don’t hesitate to give Member Services a call
on 9365 4840 or email us at [email protected].
MSWA Camps for 2016
MSWA provides recreation camps for Members, carers and families, primarily funded
by Lotterywest, and at a nominal cost to participants. These camps provide a break
from daily routines, and strengthen friendships and support networks. These services
are provided at little or no cost to financial Members of the MS Society.
Here are the dates for camps being held in the coming few months:
Members Camp at Moore River: 16 May – 19 May
Members Camp at Woodman Point: 5 September – 8 September
Family Camp at Woodman point: 27 September – 30 September
For further enquiries and bookings, contact Sumit Sandhu - Camps coordinator on (08) 9365 4843.
4
Letter from the Editor
Dr Greg Brotherson
A first and positive result for
people with primary and secondary
progressive multiple sclerosis
Professor Alan Thompson, Chairman of the International
Progressive MS Alliance Scientific Committee, said of
Ocrelizumab, “It is not only a source of hope, but also an
important milestone that will further inform development
for effective treatments for everyone with progressive forms
of MS.”
Happy New Year everyone, and what an exciting year it now
promises to be! On behalf of the Bulletin team here at the
treadmill we hope that you did not find the extreme heat too
draining. With the seasons as a guide, this is the first of four
Bulletins you will receive for 2016.
In the past two editions of your Bulletin we have been
discussing the International Progressive MS Alliance, which
continues to grow and expand. With more than 2.3 million
people worldwide currently living with multiple sclerosis, and
with more than half of these people living with a progressive
form of multiple sclerosis, that a concerted coordinated effort
by this global alliance of multiple sclerosis societies is taking
shape will provide each of us with hope of a breakthrough
treatment in 2016.
This global alliance includes MS Research Australia (MSRA);
Associazione Italiana Sclerosi Multipla (Italy); Deutsche
Multiple Sklerose Gesellschaft (Germany); Esclerosis Múltiple
España (Spain); Multiple Sclerosis International Federation
(UK); Multiple Sclerosis Society of Canada (Canada); Nationale
Belgische Multiple Sclerosa Liga (Belgium); National Multiple
Sclerosis Society (USA); Scleroseforeningen (Denmark); and
Stichting MS Research (The Netherlands).
Although these are early results from the trial and show a
relatively small effect on progression, we are also told that
the results have created a great deal of excitement in the MS
research community as it raises hope that there may soon be
a treatment that can be prescribed for people with progressive
multiple sclerosis (Reference MS Wire, January 2016).
Commenting on Ocrelizumab Phase III trial, Lawrence
Steinman, Professor of Neurology at Stanford University
said, “The results are on the mild side, but it’s a great start.
An absolute gift – it’s the first time that anything’s worked in
the field.”
We have also been informed that Ocrelizumab has generated
quite a buzz in the research community by creating an added
impetus for a new direction of research into progressive MS
treatments. The Alliance has called for planning grants which
resulted in applications for 52 different networks involving
480 researchers from around the world. The Scientific
Steering Committee of the Alliance is currently evaluating all
proposals to determine the awards.
Further applicants will be accepted from Planning Grant
recipients in mid-2016 and grants for the Collaborative
Network Awards will be awarded in late 2016. The goal
of these awards is to establish teams of excellence that
engage in transformative research leading directly to clinical
application and tangible improvements for people living with
progressive forms of multiple sclerosis.
The sponsor for Ocrelizumab, Roche, plans to submit the
full data from the clinical trials to the US Food and Drug
Administration early this year. Submissions to the regulatory
authorities in other countries are likely to follow later in 2016.
While currently there are no approved treatments for primary
and secondary progressive multiple sclerosis, the people at
MSRA tell us that the recent clinical trial results of Ocrelizumab
make it the first therapy to have a beneficial effect in the
progressive group of patients.
Do you want to receive the Bulletin online?
Want monthly information updates?
Register your email address today to start receiving our
monthly Vitality e-newsletter and the Bulletin magazine online.
Just email [email protected] or call 6454 3114
and let us know your current email address.
5
Letters to the Editor
We cannot get over how much the MS Society of WA has
helped us, especially over the past two years when Tim has
needed more assistance and equipment than in the previous
25 years of living with MS.
The staff in the many departments we have utilised are all
wonderful as they guide us through the journey of MS. The
friendliness and professionalism of each staff member is of
the highest order. To mention a few:
Associate care provides seamless home help every week.
The office staff are great and the care workers well trained
and very positive individuals.
Marilyn Sylvester and her physio team help keep up Tim’s
physical strength and abilities allowing him to be able to
function with some independence and dignity at home.
The OT Department with Sandra Wallace and Brea Carlton
have provided us much assistance with wheelchair funding,
posture management, hoist training and extra things needed
to manage at home.
Michaela Kilroy in counselling helped us both cope better with
the difficulties of multiple sclerosis.
I am a Member and attend the Beechboro Outreach Group.
I was first diagnosed in Perth over 18 years ago. My symptoms
seem to have stabilised years ago and I am still walking about;
only slowly are things deteriorating. I’m one of the lucky ones.
I’m writing to offer my congratulations to our CEO Marcus
Stafford on his well-deserved award of 2015 National
Not-for-Profit Manager of the Year, given by the Australian
Institute of Management.
We all love it when Marcus visits us at Beechboro, spreading
good cheer and keeping us informed and up to date on all
matters regarding the Society and current research. It would
be pleasant to meet some of the other hardworking and
dedicated people mentioned in our Bulletin, perhaps at least
once a year.
I would also like to express our appreciation to Dr Greg
Brotherson and congratulate him for an ever increasing
standard of excellence in the presentation of the Bulletin.
As a Member for many years, I have seen Dr Brotherson’s
editorship of the Bulletin develop the journal into one of the
highest quality magazines of its kind in Western Australia.
6
Irene Willis and Sumit Sandhu provide carer related activities
and regular monitoring of the support carers need.
The nursing staff including Lyn Reeves and Jill Crombie have
responded to our concerns with phone calls, emails, chats at
the Wilson Centre, home and in hospital.
The respite provided by the Society has been so important
for us. Treendale Gardens staff have been so welcoming
which allows me respite and also a chance to visit my family
overseas. We also love the opportunity for holidays together
using the family unit there.
As you can see, we have a long, long list and unfortunately
cannot name more of your able staff on this occasion. We can
end with a big shout out to staff who provide such awesome
fundraising and fund managing that directly impacts Members
in a positive way.
I want to thank you and all staff again for the amazing work
the Society does to enable us to feel much more empowered
and centred as Tim and I continue experiencing life with
multiple sclerosis.
Tim and Diane Johnson
Finally, I wish to thank Ms Sue Shapland for her most
informative article in the Bulletin (Summer 2015). It has taken
years for me, and I think my doctors, to recognise that my
form of multiple sclerosis has been the progressive kind, with
relapses gradually decreasing, but secondary symptoms of
neurological disability gradually increasing.
I feel I have been let off lightly so far, compared with many of
my fellow sufferers, who I commend here at Beechboro, for
their courage, cheerfulness and ever-present good manners.
The weekly trips to Beechboro and the excellent care given by
staff, gym and physio specialists, makes us feel we are part
of a warm, generous family and for this I’m sure all of us offer
heartfelt thanks to the MS Society of WA.
Valerie Melrose
I have just turned 60 and maybe it’s time for a midlife crisis.
In fashion, orange is the new black and maybe 60 is now
the new midlife, it certainly feels like it for me as I have
recently been testing the boundaries of my relatively tame
and pedestrian life with many new adventures.
My family and I marked the occasion by doing a freefall
tandem parachute jump from 14,000 feet. We landed on
the soft sand of the beach at Jurien Bay and started a new
tradition of an annual weekend away together as a family, a
great way to retain connection. Two ticks for the bucket list.
After five long years
I have finally finished
my Bachelor of Arts in
Theology and I feel like
a bottle of champagne
bubbling up after the
cork is released. So,
here I am, free from
the millstone of study,
at the new midlife of
60 looking around for
things to do.
My MS still improves and I picked up a half completed cross
stitch which I started before my diagnosis. I’m taking on this
new challenge in my midlife. The stitches are not quite as
precise as previously and I am making many mistakes but
I’m happy and hopeful that the completed work will look okay.
I had a very conventional birthday barbecue at home which
was catching up with a snapshot of my life. Lots of family,
even a few from my ex-husband’s family, people from my
pre-MS career, post-MS people from my church and people
who I have met on my life’s journey. It was humbling that so
many people took the time to celebrate my birthday with me.
I have enrolled in an intensive course at Royal Perth Hospital
as a Chaplain Intern and am contemplating a clinical trial for
a non-MS related condition which includes stem cells and
ceramic printing; it sounds intriguing. I have just bought a new
car, very sporty looking, hmm…how midlife crisis.
I have also just joined the State Emergency Service (SES) as
a volunteer radio operator. This is a real job, doing real things
and making a real difference in people’s lives. I feel complete
doing this work.
Midlife must agree with me as I was approached by someone
who asked me to take part in a small film, he liked my energy.
Wow, midlife crisis, bring it on, life just keeps getting better
and better.
Julie Nelson-White
Thank you
Giving a donation or leaving a gift in your Will to MSWA, can open
up many exciting opportunities for you to make a big difference to
the lives of people with MS. Your gift, combined with those from
other MSWA supporters, will make a powerful impact and help us
to continue our very important work.
The Society would like to acknowledge the following people for
their generous gifts:
Mr & Mrs D’Angelo
Ms. Ettles
For more information on making a donation to the MS Society or
leaving a gift in your Will, please call Michael van Oudtshoorn on
(08) 6454 3168 or email [email protected]
Michael van Oudtshoorn
Planned Giving Manager
7
Round-up of research
and other items of interest
Sue Shapland RN, BN
Bringing you MS research updates from around
the world:
Multiple Sclerosis Society UK
Ocrelizumab is an intravenous infusion treatment, developed
by Hoffmann-La Roche, that has been in phase three clinical
trials looking at its use in primary progressive MS and
relapsing MS.
Two phase three trials completed in June 2015 had positive
outcomes reported as a treatment for relapsing-remitting MS
against interferon beta-1a (also known as Rebif). The trials
involved over 1,600 people and after two years, the study
is reported to show that Ocrelizumab reduced the annual
relapse rate by 46% and the number of lesions in the brain,
as measured by MRI scans, by 94%.
Update on Ocrelizumab
Ocrelizumab works by targeting a certain kind of immune cell
that can contribute to the damage to the nervous system,
including the nerve cells and the protective covering around
nerve fibers. It is taken by intravenous infusion twice a year.
In the clinical trial data released last spring, which covered
732 people with primary progressive MS, people who took
the drug had a 24 percent reduction in the progression of
disability after 12 weeks compared to those who received
a placebo. Study participants on the experimental medicine
also experienced slower declines in walking ability and brain
volume than people in the control group.
The reason that the new drug is generating so much interest,
though, is that it’s the first time a therapy for primary
progressive MS has had any impact at all.
And it’s the first MS drug to ever receive a “breakthrough”
designation from the Food and Drug Administration, which
puts the experimental medicine on a fast track to get through
the review process as quickly as possible. The agency granted
the designation in February this year.
UK MS Trust
How common is nerve pain in early MS?
This study of 377 people with MS examined how common
nerve pain was in early MS.
Nerve (neuropathic) pain is caused by damage to the nerves
in the brain and spinal cord and includes trigeminal neuralgia,
the MS hug, Lhermitte’s sign and altered sensations such as
pins and needles, numbness, crawling or burning feelings.
Participants who were experiencing nerve pain, also had
significantly higher levels of depression, fatigue and disability.
The researchers suggested that treatment of the pain should
also take these other factors into account, to help improve
overall wellbeing.
What effect do disease modifying drugs have on
disability progression?
Disease modifying drugs (DMDs) work by interacting with
different parts of the immune system to treat the inflammation
caused by MS, reducing the number and severity of relapses.
There is also some evidence that the DMDs can reduce
disability progression (the build-up of disability over time).
Thirteen studies, of between one and three years, with a total
of 9,788 participants were included in the analysis.
The review found that overall, the DMDs reduce the risk
of increasing disability compared to participants taking
a placebo. Further analysis revealed that there were no
differences in the effect on disability regardless of how the
drug was taken or whether it was used as first or second
line treatment.
What MS symptoms affect work?
This study in the USA examined
four key MS factors –
depression, cognition, fatigue
and motor function – to
investigate their relationship
with employment in a group of
53 people with MS.
Participants took three to
four hour long assessment
sessions completing various
tests and questionnaires to assess their
cognition, motor function, mood and fatigue.
8
The study found that cognitive, motor function and fatigue
test scores, as well as higher EDSS scores, were significantly
related to unemployment.
The researchers concluded that health professionals could
support people with MS and help them to learn management
techniques to deal with, or compensate for, fatigue and
cognitive symptoms that could help them stay employed.
Emotional changes in people with MS
This French study looked
at emotional changes in
60 people with relapsingremitting MS (RRMS) and 41
with primary progressive MS
(PPMS). Each person with MS
in the study was matched to a
control participant (who did not
have MS), for age, gender and
level of education.
The study found that emotional changes are common in
both people with RRMS and PPMS and can be found in people
who do not meet the criteria for a diagnosis of depression
or anxiety.
As even subtle emotional changes can have an impact on
quality of life, the researchers concluded that a health
professional’s ability to recognise these smaller changes help
people with MS access the necessary support to manage
emotional changes they experience.
MS Society of Canada
Researchers link the ‘clock’ hormone melatonin to
seasonal MS relapses
MS relapse activity follows the
seasons with attacks generally
more frequent in spring and
summer. Although the reason
for this seasonal pattern is
unknown,
one
hypothesis
suggests that a factor provoked
by the environment that rises
and falls with the time of year
may be responsible.
An international team of scientists from Argentina and the
United States identified a possible candidate; the hormone
melatonin, whose levels peak over the autumn/winter months
and then drop off in the spring/summer months.
The authors provided strong evidence that melatonin protects
against MS relapses, decreasing the number and severity of
relapses during the autumn and winter months. This protective
effect is diminished in spring and summer as melatonin
levels subside.
Diet and Exercise
The effects of diet on MS
treatment and progression are
uncertain. Although a topic of
interest for the MS community,
conclusive evidence supporting
dietary claims is scarce.
Research investigating the
effect of dietary manipulation
on MS is challenging, as these
types of studies are difficult to design and control for.
Exercise has demonstrated benefits above and beyond
fitness, including neuroprotection, neurogenesis (the birth of
new neurons), and improved cognitive function.
Dr Amy Latimer-Cheung from Queen’s University published an
extensive review highlighting data on the effects of exercise
in MS. Many studies demonstrated that exercise training
improved mobility, fatigue and quality of life among people
living with MS.
There are a number of clinical trials under way around the
world that are providing clearer answers as to whether
exercise interventions may improve MS disease.
Read more at:
mswa.org.au/
researchupdate
9
Our Health House
Healthy Feet
Lisa Papas, Counselling and Social Welfare Manager
What is so important about my feet?
Healthy feet are essential for comfort, stability, balance and
healthy ageing.
Many moons ago I had the privilege of working in New Zealand
as a counsellor in the field of addictions. As you would imagine,
working in that area had its own challenges and rewards.
Understanding the importance of whanau and how whanau can
contribute to illness and assist in curing illness is fundamental
to understanding Maori health issues.
Having healthy feet allows you to be active which has
numerous benefits such as:
• helping you to keep weight stable;
• maintaining and improving muscle and bone strength; and
• improving emotional and mental health.
When feet are healthy, it allows for proper foot and body
mechanisms, which helps prevent falls.
It was through this work that I was introduced to the concept of
Te Whare Tapa Wha which is a model developed to understand
the four cornerstones of how Maori people conceptualise
health. I have often used this model with people to explore
balance and wholeness.
Taha hinengaro (mental health) – the capacity to
communicate, to think and to feel mind and body are
inseparable.
Te Whare Tapa Wha is embedded in the concept of a four
sided house. Should one of the four ‘walls’ be missing or in
some way damaged, a person, or a collective may become
unbalanced and the house falls down.
Taken from: publichealthworkforce.org.nz/Maori-publichealth-perspective.aspx
Even wearing footwear is more comfortable when your feet
are well looked after.
Caring for Feet
A large proportion of MSWA Members may require assistance
with their basic foot and nail care.
Mobility changes, poor manual dexterity or poor vision can
make it too difficult for self-care of feet. For some people,
accessing basic foot and nail care is difficult, due to costs,
transport and not having anyone willing or able to assist.
Being unable to perform these tasks can lead to a degree of foot
and nail neglect which can contribute to more serious issues.
It is important to make sure that the person tending to your
foot care is suitable. Some people will access foot care
services through a podiatrist and some will rely on family
members or friends for help with this.
Care support workers may file nails and check length but they
are not permitted to cut nails. If a cutting service is required,
care support workers must refer the request to their supervisor.
It is always recommended that if you have any of the conditions
listed below, you should see a podiatrist regularly for toe nail
cutting and foot care:
• Diabetes
• Peripheral Neuropathy (numbness, tingling in legs or feet
and weak muscles in legs)
• Peripheral Vascular Disease (circulation problems in legs,
diseases of arteries)
• A current, or history of having, a foot ulcer
• A foot or leg amputation
• Ingrown toenails
• Are taking anticoagulant medications
• Have problems with chronic swelling of feet or legs
10 Autumn 2016 The MS Society of Western Australia
If you are unable to maintain your own foot care and there is
not someone else who attends to this for you, it is important
that you seek alternative care. The following list of affordable
and suitable options may be helpful:
• Y our GP can arrange five private allied health visits per
year for a person with MS – this includes podiatry. The
cost is usually covered or subsidised by Medicare. This
service is arranged by your GP through a Chronic Disease
Management Plan (previously known as an Enhanced
Primary Care Plan).
•M
any local councils in WA provide subsidised podiatry
clinics to seniors and people with a pension or disability
pension card. Contact your local council to enquire. Head
to elections.wa.gov.au/elections/local/council-list/ for a full
council list and their contact numbers.
• In-home podiatry services are also available for eligible
Home and Community Care (HACC) clients in some
local councils.
• A ctive Podiatry in O’Connor and Canning Vale provide an
in-home service to HACC assessed clients. They also
provide a subsidised podiatry service for those with a
Chronic Disease Management Plan. Phone 9337 1912 to
get in contact.
• T he University of Western Australia offers a podiatry clinic
with services run during the University semester. Podiatry
students under the supervision of qualified podiatrists
provide a full range of podiatry services for around 50%
less cost than private practices. Have a look at their website
meddent.uwa.edu.au/podiatry/clinic or phone 6488 4522.
T here is a podiatry directory listed with Department of
Health and public funded podiatry services throughout
metro and rural WA. To access this directory visit
health.wa.gov.au
In a traditional Maori approach, the inclusion of the wairua,
(spiritual health), the role of the whanau (family), and the
balance of the hinengaro (mind), are as important as the
physical presentations of illness.
I always felt this was a lovely idea and lent itself to an
understanding of the wider concept of the whole person.
Have a read of the explanation of the four elements and have
a think about how this model fits with your idea of health and
wholeness.
Taha tinana (physical health) – the capacity for physical
growth and development.
Our physical being supports our essence and shelters us
from the external environment. For Maori people, the physical
dimension is just one aspect of health and well-being and
cannot be separated from the aspect of mind, spirit and family.
Taha wairua (spiritual health) – the capacity for faith and
wider communication.
Thoughts, feelings and emotions are integral components of
the body and soul.
Bringing these concepts to counselling work and my
discussions with people, helped me to work with greater
understanding of both indigenous communities and the wider
community concepts of whole health or holistic wellbeing.
Australia’s indigenous communities have a very similar
concept of health that is linked to the delicate balance and
cultural attachment to the life force of the land, spiritual
practice, family connections and psychological wellbeing.
When one or more of these elements are out of kilter, health
and wellbeing suffer.
In my experience, embedding these cultural concepts into my
work as a counsellor gives people another way to envisage
their own health journey.
Take on a challenge if you wish…get a piece of paper and
draw four quadrants. Name each quadrant:
• Mind
• Body
• Spirit
Health is related to unseen and unspoken energies.
• Family/Community
The spiritual essence of a person is their life force. This
determines us as individuals and as a collective, who and what
we are, where we have come from and where we are going.
Consider each area.
A traditional Maori analysis of physical manifestations of
illness will focus on the wairua or spirit, to determine whether
damage here could be a contributing factor.
Talk to your family or support person about your health house
and how it looks for you.
Taha whanau (family health) – the capacity to belong, to
care and to share where individuals are part of wider social
systems.
Whanau provides us with the strength to be who we are. This
is the link to our ancestors, our ties with the past, the present
and the future.
Are there things that affect your health house walls?
What can you do to keep your walls strong?
You can always contact us at the MSWA Counselling
department on 9365 4808 to talk about balance and
wellbeing and how you can work towards achieving this.
There are some great lessons to be learned from some
of our oldest cultures and their concepts of wellbeing.
I hope you keep your walls strong and your house full!
The MS Society of Western Australia Autumn 2016 11
NDIS / NDIS My Way WA Trial Sites
Update – February 2016
Mark Douglas, Manager Operations, MSWA NDIS Business Development
The launch of the concept and trials for a National Disability
Insurance Scheme (NDIS) in Australia was the culmination of
years of advocacy and lobbying from both the disability and
carers sectors and a Productivity Commission Report. It is the
largest reform of the disability sector in Australia’s history.
Western Australia agreed to participate in a two-year trial of
the NDIS that commenced in July 2014. WA is the only state
hosting two versions; the National model in the Hills area
and the WA State Government model NDIS My Way in the
Southwest and now Cockburn and Kwinana.
In my previous articles I have discussed these two different
models of the NDIS being trialled in Western Australia and
the benefits of comparing them prior to a final decision being
made as to which model would be implemented in here.
With the WA trials due to conclude in June this year and
full roll out of the scheme expected to commence from
July, a decision has not yet been announced regarding
the future model of the NDIS in Western Australia or the roll
out timetable.
It is vital that this decision is made without further delay so that
Governments bilateral agreements can be completed. Once
these agreements have been signed, information regarding
how the NDIS will be rolled out to the rest of Western Australia
will be made available. This will provide potential participants
with some certainty as to when they may be able to access
supports provided by the NDIS.
Regardless of the ultimate model of the scheme that is
chosen, the NDIS will allow eligible people to access timely
supports previously unavailable to them.
Since my last update, I have spoken with some of our Members
living in the trial sites and asked them to share their thoughts.
Joanna, from Middle Swan said, “Receiving NDIS supports is
helping me live a fulfilling life. My goal was to be able to keep
working and continue my daily living activities. Gaining supports
from the NDIS was an easy process. I didn’t think I would be
eligible because I was still working and was surprised to find out
that the NDIS is not income tested and I could receive help.” This
is a common misconception amongst the Members I spoke to,
and the reason some have not yet tried to access the Scheme.
One of the key principles of the NDIS is to provide access to
supports earlier rather than later, helping people to maintain
their employment and continue to contribute economically.
Natasha from Beeliar told me that the process hasn’t been
without issue but thought that the idea of the Scheme was
right and that in time, hoped that the system would benefit a
larger number of people living with a disability.
Many participants with NDIS plans have echoed Natasha’s
thoughts. The planning process can be lengthy and confusing
for some. Please remember that the MSWA staff are here
to help our Members better understand the Scheme and
to help with the planning process.
During the trial in Western Australia much has been
learned about the best ways to support people living with a
permanent and significant disability and the NDIS processes
have improved.
The number of people accessing the NDIS is steadily
increasing as people become more familiar with the extensive
types of funded supports offered.
I hope that in my next update, I will have the pleasure
of advising you how the NDIS will be rolled out across
the whole of WA and when you may be able to apply to
access these supports.
If you would like further information, please contact MSWA NDIS Operations Manager –
Mark Douglas on 9365 4824 or email [email protected]
NDIS Hills Trial Site contact details:
For people living in the local government areas of
Swan, Kalamunda and Mundaring:
NDIS: ndis.gov.au
Telephone: 1800 800 110
NDIS Access checklist: ndis.gov.au/
ndis-access-checklist
NDIS – My Way contact details:
For people living in the South West Region
& Cities of Cockburn & Kwinana:
NDIS – My Way: disability.wa.gov.au/
wa-ndis-my-way/wa-ndis-my-way/
Telephone: 1800 996 214
Eligibility Check: dsc.wa.gov.au/Am_I_Eligible/
MSWA leading the way
for WA research
MSWA has committed almost one million dollars to fund five
local researchers for the next two years, in a bid to help find
the cause, better treatments and a cure for MS.
Dr Michelle Byrne – Head of Clinical Psychology Unit,
Centre for Neuromuscular & Neurological Disorders at
the University of Western Australia
Our CEO Marcus Stafford said, “We are acutely aware of
how hard it is for researchers to secure funding these days.
Initially, we had planned to fund the researchers for one year
but when we saw the quality of the work they are doing, we
decided to commit to funding them for two years.”
Dr Byrne’s research focuses on neuroplasticity and rewiring
the brain. Her project will evaluate the effects of an integrated
cognitive and psychosocial rehabilitation program to facilitate
improvements in cognitive and psychosocial development.
MSWA has a long history of providing significant financial
contributions to Australian MS research efforts into finding
the cause, better treatments and a cure for MS.
This year we once again led the way with an additional one
million dollars towards a national research focus.
We are now proud to announce the successful candidates
which includes three post doctorate research fellowships and
two social and applied research applicants.
Here we highlight two of the researchers and learn more
about their projects.
Dr Marzena Pedrini – Senior Research Officer, Western
Australian Neuroscience Research Institute (WANRI)
Well published in the multiple sclerosis and associated
research fields, Dr Pedrini supports several current and
proposed projects including “Exploring the mechanisms of
MS pathogenies”, HSCT (stem cell) register, Ultraviolet B
(UVB) therapy in MS and Epstein-Barr virus (EBV) research.
She told us, “Our research aims to provide better understanding
of the MS progression, from the first episode of demyelination
to the conversion to MS and then to the benign or aggressive
course. Knowing the predictors, biomarkers of specific course
will help to tailor the best therapy.
“This project will utilise radiological as well as clinical data
to predict specific disease sub-types. In this way, we hope to
build a detailed profile of MS that can be utilised in disease
diagnosis and monitoring.”
“People with MS have lesions on the brain which have killed
the cells. But through cognitive retraining programs there are
other areas of the brain that can be recruited to become active
and carry out the functions of the brain that are snoozing,”
Dr Byrne said.
“There’s a very strong interplay between someone’s physical,
emotional and cognitive wellbeing. So if we can help someone
improve their memory, information processing or problem
solving, it will improve their quality of life.”
The other researchers include:
r Anderson Jones from the Telethon Kids Institute
•M
focusing on extending the Phototherapy for Clinically Isolated
Syndrome (PhoCIS) project looking at the mechanisms
by which UV affects the immune system and contributes
towards finding a way to stop the progression of MS;
•D
r Lucinda Black from Curtin University focusing on
exploring the link between dietary factors and the risk
of MS; and
• Professor Soumya Ghosh from WANRI and Sir
Charles Gairdner Hospital investigating whether the
use of non-invasive brain stimulation plus balance
treatment enhances neuroplasticity for people with
relapsing-remitting MS.
Keep a look out for the next Bulletin where we
will take a closer look at the remaining research
projects and update you on the progress of the research
being undertaken.
MSWA heads to
Shenton Park
MSWA is one step closer to building a new high support
accommodation facility in Shenton Park for people with MS
and other neurological conditions after the State Government
announced in January plans to lease land to the Society.
The Society has set aside $2 million for the build, and plans
to commence work on the facility as soon as the agreement
is finalised. The Shenton Park facility will offer high support
accommodation to people with MS and other neurological
conditions in WA, with lodgings to include a private bedroom,
lounge, kitchen and bathroom and provide around the
clock care.
As well as MSWA’s high support accommodation facility,
the old Shenton Park hospital site will also be a new home
for the Leukaemia Foundation and an urban village for up to
1,600 homes.
There’s an
app for that!
It is hoped that the new Shenton Park facility will emulate the
success of the Treendale high support accommodation facility
near Bunbury where Members in residence have become part
of the community.
Shenton Park’s location makes it very convenient for transport
links and means that family and friends will be able to
visit easily.
The build of the facility has been made possible thanks
to the public’s continued donations and support as well
as funds raised from the Mega Home Lottery.
You could be our very
first multi-millionaire!
The first MS Mega Home Lottery of 2016 launched in
February and the stakes are higher than ever. For the
first time, the winner will be walking away an instant
multi-millionaire!
In the last edition of Bulletin, we shared with you five free
apps designed to improve your life in one way or another. In
our second instalment of this series, we bring you five free
MS-specific apps from journals to record your symptoms and
relapses to reminders you can share with family members.
Whether you’re living with MS or involved in the care of
someone with MS, these apps might help you better manage
life with MS.
1.SymTrac – SymTrac is an MS symptom tracking tool
created by Novartis Pharmaceuticals. Record and rate
your daily symptoms, chart your progress, and share your
information with your healthcare team. The app allows
you to add custom symptoms which means that no matter
how unusual, you can still document and track them within
the app. It also includes a series of exercises designed for
people with MS.
Compatibility: iPhone, Android
2.RxmindMe Presciption – RxmindMe Prescription is a
medication reminder app designed to help you keep track
of your medications. You can set up medication reminder
notifications, dosage information, and record when you’ve
taken your medications.
Compatibility: iPhone
3.MS Self – Among other things, MS Self allows users to
track symptoms, mobility, energy levels, and mood. Your
journal entries are searchable and can help provide insight
into finding patterns in behaviour and symptoms. The app
also syncs to Fitbit to monitor your exercise and activity
levels with more accuracy.
Compatibility: iPhone, Fitbit
4.Multiple Sclerosis Diagnosis & Management – This
app has been designed as a tool for neurologists and
other healthcare providers to help in the diagnosis and
management of MS. The comprehensive app contains
everything from a list of MS signs and symptoms to a two
question screening tool for depression which can affect
those who have been diagnosed.
5.
MSAA – Multiple Sclerosis Self-Care Manager –
This app has been specifically designed by the Multiple
Sclerosis Association of America (MSAA) for people living
with MS. Users can track relapses and symptoms, manage
medications and get the latest research news. The app
also includes a journal and allows you to compile your
medical records.
The Grand Prize is the biggest in the Lottery’s history at
$2.1 million. This comprises a stunning $1.6 million how
home located in the beach side suburb of Harbour Rise,
Hillarys, built and furnished by Webb & Brown-Neaves,
plus $500,000 in cash.
In even more good news, the chances of winning a prize
have significantly improved from last year’s 1 in 25 to an
amazing 1 in 15. With a massive $5 million prize pool of
8,338 prizes including prestige vehicles, overseas holidays
and home electronics, the odds have never been better.
Not forgetting, the $500,000 Early Bird Cash Prize, and four
$50,000 Bonus Cash Prizes are also up for grabs! The four
Bonus Cash Prizes will be drawn on Wednesday, 30 March.
The winning tickets will be re-entered and eligible to win
any of the remaining prizes, including the Grand Prize.
As in previous years, the lottery’s popularity is evident in
the tickets having sold out in record time. Thank you to the
supporters of the MS Mega Home Lottery for supporting
MSWA’s work in providing support and services to the
thousands of Western Australians living with MS and other
neurological conditions.
The draw for all remaining prizes, including the Early Bird
and Grand Prizes, will take place on Wednesday, 27 April,
with winners to be published online at mslottery.com.au.
Keep an eye on mslottery.com.au as well as on
facebook.com/MSMegaHomeLottery to see if you are
one of the lucky winners!
ENJOY THE SIGHTS AND SOUNDS OF THE BEAUTIFUL BRIDGES AROUND PERTH
BY THE LIGHT OF NIGHT WITH THE BRIDGES NIGHT RIDE FOR MS!
Decorate your bike in your most outrageous lights and join us for a 40 or 70km ride on Friday night, 8 April 2016.
Money raised will help us support the thousands of people in Western Australia living with MS and other neurological conditions.
Register now at msfundraise.org.au/Bridges-Night-Ride-for-MS/register/
Shaping your
own destiny
Tips for successful
communication
Leonie Wellington
A conversation is an opportunity for everyone involved to feel
able to contribute their information into the main pool. Having
all the information reduces the use of assumptions or jumping
to conclusions.
Active listening is a great way to check out the meaning
behind what others are saying. Reflecting what you are
hearing by paraphrasing, asking clarifying questions and
summarising are all skills that help reduce misunderstanding
and defensiveness.
When sharing your own information, using “I” statements and
avoiding exaggerations, generalisations and absolutes helps
others to hear what you mean and minimises the possibility
of others becoming defensive or clamming up.
Here are some more ideas to make communication safe
and open:
• A conversation is not a debate; it is a search for mutual
respect and understanding.
• Choose the timing of a conversation for when you are calm
and prepared.
• Make a time and place to have important conversations and
invite others.
Dr Andrew Ong
•W
rite a script or list of main points to keep you on track.
• E nsure that there are minimal distractions.
• K eep to the facts as you know them, don’t jump to
conclusions or make assumptions.
• E xpress your concerns in “I” statements; “I feel that”, “I am
starting to wonder”, “I wanted to check out with you”.
• T ake responsibility for your part in the situation and share it.
• A void generalisations and exaggerations such as “you
never”, “you always”, “everybody knows”, “it is always”.
• Invite others to tell their story.
• T reat others as you wish to be treated.
•B
e prepared that not everyone will agree with you or share
your beliefs and values.
•U
se active listening to check you are understanding what
others are saying.
•B
e open to compromises or different solutions.
• P ractise new skills on easier topics to gain confidence for
tougher conversations.
“We see a universe marvellously arranged, obeying certain
laws, but we understand the laws only dimly. Our limited
minds cannot grasp the mysterious force that sways the
constellations.” Albert Einstein, 1930.
The most powerful way to shape our lives is to first make the
decision to take action. The results that people produce from
this mind-shaping exercise rest on that decision. Each of us
will make different decisions and our different actions as a
result of this will take us in a definite direction, leading us to
an ultimate destination — our particular destiny.
Making this positive decision in the first place means that
we are no longer the creature of circumstances, instead we
have made circumstances the creatures of men and women.
So if we want to direct our lives we must take control of our
actions, and then follow through by being consistent about it.
What then precedes all our actions? What determines what
we do and what we will become? What is it that gives birth
to all actions? The answer to each of these questions is the
decisions we make. You begin to shape your destiny the
moment you make that decision.
A different decision will radically change your life for better or
for worse. It is your decision however, not the condition of your
life that will determine your destiny. Your destiny is therefore in
your hands and shaped by the decisions you make.
The history books are full of people like Einstein, Gandhi, and
the deafblind Helen Keller who, against all odds, have broken
through impossible barriers to move on and beyond the
limitations of their circumstances by making new decisions
about what to do with their lives. They become our shining
examples of the unlimited power of the human spirit.
“The best and most beautiful things in the world cannot be
seen or even touched – they must be felt with the heart.”
Helen Keller
SUNDAY, 1 MAY 2016
Zika Virus Alert
A global health alert has been released by the World
Health Organization (WHO) regarding Zika virus. As stated
by Dr Margaret Chan, WHO Director General, “Zika virus
is a serious global health concern with highly likely
global spread”.
Zika virus is a mosquito borne disease which is known
to circulate in Africa, the Americas and the Pacific. Most
patients who present with Zika virus are asymptomatic but
in some cases it can cause fever, rash, severe headache as
well as joint and muscle pain.
There is particular concern regarding the effects of the
virus on pregnant women and their foetuses. Women who
are pregnant should reconsider travel to areas with current
outbreaks of Zika and it is important for pregnant women
to consult their health professional to discuss the risk of
transmission and infection.
There is no vaccine or specific treatment for Zika, which
emphasises the importance of undertaking preventative
measures. For those who are living in or travelling to endemic
areas, prevention relies on avoiding mosquito bites.
For further information, please follow the links below:
smartraveller.gov.au/bulletins/zika_virus
cdc.gov/zika/pregnancy/index.html
who.int/mediacentre/factsheets/zika/en/
health.gov.au/internet/main/publishing.nsf/Content/
ohp-zika.htm
Join this unique event and feel the reward and exhilaration of climbing 53 flights
or 1,103 stairs to the top of Perth’s tallest building Central Park, whilst knowing
you have helped make a difference to the thousands of Western Australians living
with multiple sclerosis (MS) and other neurological conditions.
REGISTER NOW AT WWW.STEPUPFORMS.ORG.AU
Outside
Shemar Moore
Ros Harman
American actor Shemar Moore is not only holding our
attention as Derek Morgan in TV show Criminal Minds, he is
also playing a role as loyal ambassador for the National MS
Society in the USA.
“Go outside and play for goodness sake!” my mother said,
fed up with our constant bickering. And for goodness sake,
we did.
Outside, we climbed through the barbed wire fence and nimbly
avoided cowpats as we ran barefoot across the paddock to the
patch of bush left uncleared down by the creek. An ancient
red gum split in half by lightning long ago in someone’s
dreamtime became in turns our cubby-house, our castle, our
lookout and our haven. Our toes gripped its blackened bark
as we climbed up into its branches, stretching for handholds.
A kookaburra laughed as we arranged branches into a bridge
across the trickle of brownish water that was the creek. We
watched glutinous frogs’ eggs turn into tadpoles which we
took home in a jar. We fossicked around in the scrub and
picked a conciliatory bouquet of raggedy wildflowers to offer
to our mother.
As an only child, whose parents split up when he was two,
Shemar has always been very close to his mother Marilyn.
“She made whatever sacrifices and took whatever job
opportunities she could with the hopes that she could give
me the best future I could have,” he says admiringly.
The onset of his mother’s illness only strengthened that bond.
He added, “It didn’t take MS for us to get close. We got closer.”
Like many people, Marilyn experienced symptoms long before
she was diagnosed. Her arm itched, her feet became numb,
she experienced chills in her hands, her coordination was off,
and she was overheating frequently.
“There was always an explanation for the symptoms until my
foot started to drag,” Marilyn says.
Shemar, too, was in denial at first, “I was like, ‘Oh, Mum, just
get a massage or go to a chiropractor.’”
When doctors ran a series of tests on her, Shemar said, “…
the last thing we expected was for her to get diagnosed with
multiple sclerosis, because she was very athletic.”
It took a few years for the realisation to set in that “my mum
couldn’t fix it and that I couldn’t fix it. Like most kids, I always
felt my mum was invincible. But here was a chink in her
armour. She had kind of met her kryptonite.”
When asked why he is taking part in Kiss Goodbye to MS,
Shemar says, “I want my mum to beat this damn thing. She’s
my Superwoman and she needs to know that someone is out
there fighting for her at all times.”
Shemar has been a participant in Bike MS, a fundraising event
organised by the National MS Society in the US, for ten years.
“She did so much for me, it would be wrong for me not to give
back and fight for her. It’s almost like in this stage of life we
have traded positions; I’m doing whatever I have to do for her,
and to give her a chance to enjoy her life. MS is real, but we
are not going to let it beat us.”
When I was a child, outside was a vast, ever changing,
wondrously fascinating playground. It was my leisure centre,
my fitness centre, my entertainment centre, my school and
my place of worship. Outside I was in raw, visceral contact
with nature and through this contact I learnt about the
world and about myself. I grew strong and supple as I ran
across the sandy earth and played in the blue-green bush.
My vision developed as I studied a tiny beetle crawling on
a leaf, and then looked far into the distance where the sky
went on forever. I felt the numbing cold of the rain on my
skin in winter and the fierce sting of the sun in summer. I
learnt what it is to worship as I listened to a choir of ecstatic
birds celebrating the sunrise on a dew-festooned morning. I
understood what infinity means as I looked up and watched
the stars embracing the night sky.
These days I live most of my time inside. I sit in air-conditioned
comfort in my cool, open-plan, suburban dwelling. My
wheelchair glides smoothly over my shiny, even floorboards.
I look out into my brick-paved courtyard at a garden bed
planted with symmetrically placed, even-sized shrubs. If I turn
the radio off and listen carefully, I can sometimes hear birds
chirping in the street trees.
I venture outside occasionally and trundle in my electric
wheelchair along the footpath to the nearby shops. Along the
way I examine my neighbours’ neatly planted front gardens.
Sometimes a dog barks as I go past, or a cat slinks under a
bush. One day last spring I heard a cacophony of squawking
coming from a tree ahead of me. As I approached I saw two
large black birds sitting in the branches, their tails fanned out
beneath them displaying a band of bright red. They observed
me warily as I got near, but quickly decided I was not of much
interest and continued pecking at seeds. I found out later they
are called Red-tailed Black Cockatoos, and are a vulnerable
species, running out of the trees they like because we keep
chopping them down.
I was so excited to see these rare visitors to our suburb that I
stayed for some time watching them, until I noticed someone
peering through their curtains in the house opposite me
and thought I should move on in case I was mistaken for a
cat burglar.
I go past that tree several times a week, but I’ve never seen
the Red-tailed Black Cockatoos again. Our neighbourhood
is mostly brick and concrete, so I suppose they’ve gone
somewhere with more trees. I hope they found some.
I hope at least that they are still outside. For goodness sake.
That’s life
with Narelle
Volunteering with Dawn
Dawn Burke, Volunteer Coordinator
Narelle Taylor
Summer is usually such a purgatory of discomfort but this year
there was so much happening for me living in air-conditioned
comfort that I didn’t even notice the rise in temperature.
I’m sure that somebody, somewhere, may well have been
sweltering but I was swanning about like Cleopatra having my
every tiny whim anticipated and taken care of. I went to my
daughter Chelsea’s home in Broken Hill for Christmas.
I’m sending you all a big hello, and welcoming you back to the
Society for 2016. I hope you all had a wonderful break and are
rested up ready to embrace another fun-filled year.
The grandchildren were delightful, as grandchildren invariably
are. Santa Claus chose gifts that were very well received and
this lovely grandmother was pleased to meet friends of the
parents, friends of the children and friends of all the family. It
was heartening to know that those positions had been filled
by individuals that I approved of and liked too.
Believe it or not, the sun went down! (It was really the horizon
rising, rather than the sun lowering, but I couldn’t imagine
anyone in our party being blown away by that information.)
My sister Janine had also come from Sydney, which was great
for me, and she was hospitably accommodated and included
in everything by my daughter and her family.
Chelsea had phoned the MS Society in WA and was directed
to care providers and advised regarding what I might need to
make my stay comfortable. Bathing in milk and eating only
peeled grapes were not catered for but apart from doing
without those, I endured no trauma being away from home.
I was given an extensive visitor’s tour of every point of interest
in town and even out in the bush to the first site of this, that,
and the other, including an out of town trip to a vantage point
from where we viewed the sunset.
We all agreed that it was beautiful to see and that the glass
of wine we’d each had (children not included), was “ever so,
ever so” and did raise the tone of the event.
My father turns ninety in March in Sydney and I plan to
be there.
At times, the car was fully loaded with myself, Janine, Chelsea
and Rob, Milla and Max and the new baby Alby, as well as his
stroller and my wheelchair. Something had to stay at home.
My daughters from Perth will accompany me and our group
will present together to acclaim the old bloke for managing to
still be there at the party and yet in no way spoil the fun.
Alby is four months old and not even expected to walk, so the
stroller stayed in the car. I suggested, in a somewhat cavalier
fashion, that the wheelchair stay at the house. It wasn’t
because I felt a miracle coming on but I figured I could see
the impending phenomena through the windscreen, without
wheels on my seat.
At the aged care facility where I’m living, I wonder if
Dad could ever fit in here. I think not. He still goes to
beach each morning, summer and winter, and follows
physiotherapy doings as if they, one day, will activate
world’s first cure of MS.
They figured that Alby could be carried, like a papoose if
necessary, and goodness, I haven’t put on that much weight.
my
the
my
the
I think the sun comes up a little bit later every day
here and I wonder if one day I’ll not notice, or perhaps
not care.
DO YOU LOVE TO VOLUNTEER?
Our next event volunteering opportunities are:
Bridges Night Ride for MS - Friday, 8 April 2016
Step Up for MS - Sunday, 1 May 2016
Rotary Team Challenge - Saturday, 7 May 2016
World MS Day - Wednesday, 25 May 2016
Register your interest and help us support those living with MS in Western Australia, call (08) 6454 3131 or email [email protected]
The year has started off well and I don’t know about all of you,
but life seems to get busier and busier and I have literally hit
the ground running. I’m glad to see so many of our volunteers
returning again. It shows we are doing something right to have
such dedicated and reliable volunteers who keep coming back.
I would also like to welcome all new MSWA volunteers and
wish you well on your volunteer journey, whether it be for a
short or a long time. Any time given, no matter how long it is,
always helps and makes a difference for both Members and
staff. We have a few existing vacancies to fill and a couple of
new positions as well, which means there will be quite a few
new faces floating around at various centres.
I can now share the lowdown on the International Volunteers
Day (IVD) which I briefly mentioned in the last Bulletin. IVD is
celebrated on 5 December with one of the key events being
a Garden Party at Government House. Last year’s event was
enjoyed by nine MSWA volunteers and Nicola Ryan, Senior
Outreach Coordinator, who attended in my place.
All of those who know me by now, know I love to dress up
and I was in my element in all my red splendour prancing and
dancing around blowing bubbles. I love these types of events
and what I enjoy the most is knowing that more and more
volunteers and Members come along each year and we are
hopefully making a difference to their day.
Lunch, as always, was amazing and Julie’s Kitchen does such
a wonderful job catering for our large numbers, and they do it
well. Santa dropped in for a quick visit to deliver gifts for all.
Poor ol’ Santa must have been tired after meeting everyone
whilst dealing with the heat. I would personally like to thank
Santa, as he is also registered as a volunteer with the Society.
No rest for the wicked I’m afraid.
As you are all aware, it takes a lot of work to organise an
event such as this, and there are many people behind the
wheel driving it to success. I would like to thank all of the
planning committee, Nicola Ryan and her Wilson Outreach
team and any other staff who volunteered and helped out on
the day.
The volunteers were lucky enough to meet the Governor of
WA, Kerry Sanderson. Nicola informs me an enjoyable time
was had by all. I believe one volunteer got up to a little bit of
mischief which kept everyone entertained. I won’t mention
any names, but you know who you are!
The day wouldn’t run quite as well without the much
appreciated assistance from the QBE volunteers. QBE have
been volunteering at this event for quite a few years now and
make the whole day run more smoothly. QBE help to set up,
clean up and look after everyone by serving the drinks and
food. Without their help, staff would have to get there extra
early and stay late, so for this we are truly grateful.
The ninth of December saw our always popular end of year
Christmas Party celebration for the Members, volunteers and
staff, held again in the function room of the Christian Life Centre
in Como. What a fantastic time we all had. Overall the whole
event ran smoothly, with only some little hiccups along the way,
but hey, who hasn’t experienced hiccups here and there.
Christmas seems like such a long time ago now. I have a
sister-in-law who loves Christmas and is already counting
down the days until it’s here again, can you believe it? Let’s
get Easter over with first. On that note, I trust you all had a
lovely Easter break and enjoyed the warm weather a March
Easter brings with it.
Staff and volunteers set up the function room beautifully,
carrying the chosen colour theme of red and silver. We had
beautiful table runners with adorable little snowmen, that our
Wilson craft volunteers and Members made, and poinsettias
as centrepieces.
In some sadder news, one of our long time and founding
Members who served a term on the Board, Reemour Evans,
who was also a long-term volunteer, sadly passed away 30
January. Reemour will be sorely missed and we send our
condolences to her family, as our thoughts are with them and
with Reemour in her new spiritual journey.
The entertainment was spectacular as always, especially
the Hollywood meets Bollywood performance – I was in that
one! Jokes aside, all acts were amazing, funny and enjoyed
by all. Staff really go out of their way putting acts together
to entertain everyone. Who knows, maybe we could do a
volunteer act this Christmas? What do you think? You can
count me in.
That’s all I have for now. I look forward to catching up with
you. Please know my door is always open and if you have any
questions, or would like to source other opportunities, do not
hesitate to come and have a chat. I’m only a phone call away.
Take care, and until next time, Dawn.
Anytime Fitness
Stadium Stair Race
Walking in memory –
Rotary Team Challenge 2016
Second highest fundrasing
team,
Nelly’s Angels.
Fitness fanatics, families and fervent fundraisers flocked to
the Domain Stadium on Saturday, 20 February 2016 for the
Anytime Fitness Stadium Stair Race.
Now in its second year, this unique and exciting event allowed
participants to access all areas of Perth’s home of football,
stepping up, down and through the iconic venue.
This year’s event was bigger and better in every way. Participant
numbers were up with a fantastic 589 steppers registering to
take on the challenge of 6,000 steps in the full climb, 3,000
steps in the half climb or 1,200 steps in the mini climb.
Last year’s fundraising total was $42,785, a figure that, along
with this year’s goal of $50,000, was surpassed with an
impressive $60,110 raised.
Our top fundraising team last year was Shanae’s Shufflers
who raised $5,236. The team was back this year and have
once again taken out the title of highest fundraisers, beating
their own goal of $10,000 with an amazing $12,779! Well
done to the team on this incredible effort.
Team captain Russell said, “My wife Shanae was diagnosed
with MS just over 10 years ago when she was 19. The team is
made up of family and friends who really want to help people
living with MS. We see what Shanae goes through day in and
day out and we want to do anything we can to help make the
lives of people living with MS easier.”
The second highest fundraising team was Nelly’s Angels,
who had travelled from Kalbarri, Margaret River and Augusta
to participate in the event in support of Narelle De Grauw
who has MS. Narelle’s son, nieces and nephews took on the
challenge and raised over $5,000. A great family effort!
Our own MSWA President, George Pampacos once again
participated in the event in the full climb category. Last time
he completed the course in 60 minutes and this year saw him
with a personal best of 48 minutes. Congratulations George!
It was a real family event for George this year with his cousin
Christina Miller our highest individual fundraiser, having
raised $3,660.
MSWA Ambassador Josh Kennedy was in attendance to
cheer the participants on and was our official race starter. He
also had some fun with the kids, kicking the footy and having
his photo taken with his many fans.
Congratulations to all involved with this successful event!
Keep an eye on facebook.com/MSWesternAustralia and
stadiumstairrace.com.au for details on next year’s event.
Swimming for MS
Highest fundraising team –
The Marines.
The Swim for MS events have become a staple on the
MSWA fundraising event calendar, with over $200,000
raised in the past five years for Western Australians living
with MS and other neurological conditions.
Earlier this year a new location, Armadale, enjoyed its
inaugural Swim for MS on Saturday, 6 February. There
were 51 participants who swam in the four-hour event and
they collectively raised $2,495 for MSWA.
Swim for MS Albany is the longest running of the Swim
events, beginning in 2012. It continues to be the most
popular Swim for MS with 103 swimmers participating
when the event was recently held on 27 February, and a
fantastic $30,320 raised in the name of the ten-hour event.
Bunbury took on the swimming challenge next with the
Swim for MS Bunbury held on Sunday, 20 March 2016. This
year the Bunbury swim was a four-hour event. Over the
past three years, the Bunbury swim has raised $118,515
and had 288 participants making a splash in the pool. Stay
tuned to the next Bulletin to find out how participants did
in this year’s event!
Last year the top fundraising team was The Marines,
led by Marina Pietropaolo who is a MSWA Member. This
year Marina and her team were at it again, topping the
leaderboard with $10,677 raised.
For more information on any of the Swim for MS events,
go to swimforms.org.au
Melissa (R) with her friend Sharon.
Melissa Lang’s mother Carole was diagnosed with MS over
30 years ago. A long-time Member of the MS Society, sadly
Carole passed away in 2013 due to MS complications. Melissa
wanted to find a way to honour her mum’s memory and got
in touch with the MS Society. She participated in the Rotary
Team Challenge in 2015 and has signed up once again to walk
in memory of her mother. We spoke to Melissa to find out more
about her motivation to participate.
Why are you participating in the Rotary Team Challenge?
I first learnt about Rotary Team Challenge in 2014 and got
in touch with the MS Society to inquire further. I told them
about my mother, Carole, and was humbled and touched when
MSWA employees offered to walk in honour of my mum. As
MSWA had been an amazing support to my parents for over
three decades, I felt participating in the Rotary Team Challenge
and raising funds for MSWA was one positive way I could give
back to them. So I took the plunge and signed up last year!
What did you think of the event?
My best friend Sharon and I participated in the 2015 Rotary
Team Challenge and absolutely loved it! There were so many
positives; it got us outdoors, we chatted for nearly 4 hours
uninterrupted, the location was divine, temperature perfect, a
fun way to exercise, we engaged the community for donations
and to top it off, we shared so many laughs. It was a fantastic
experience and one we really enjoyed.
Do you have any fundraising plans this year?
Last year, we raised over $1,000 through our friends by posting
on Facebook explaining to them what we were doing and why.
This year, I have emailed and posted requests for fundraising
support to local members of Parliament, the Shire, businesses
and the Lions Club.
I am also fundraising via gardenexpress.com.au by promoting
buying flower bulbs as a gorgeous Mother’s Day gift idea.
It’s a win-win as people often like to get something back
when spending money. In outlaying money for bulbs, they are
assisting fundraising for a great cause and buying something
for their garden or selecting a personal gift for Mother’s Day.
My main fundraising avenue however is still via friends on
Facebook but family and colleagues are also on our hit list.
What would you say to encourage other MSWA members,
family and friends to join in?
Make this a priority and commit to the challenge. See it as
some much deserved me time or your good deed for the day.
Think of it as going on a rather long walk, a time to catch up
with a mate and raise some much needed funds at the same
time. And remember when you see the tunnel, the end is nigh!
Just get out there and do it!
The 2016 Rotary Team Challenge is being held on Saturday,
7 May. Cycle, run or walk along parts of the picturesque
Avon River edge, the Kep Track, the Railway Heritage
Trail and John Forrest National Park to the finish line at
the Swan View Railway Station. Choose your distance
from 22km, 50km or 75km. A unique event and a great
physical challenge, in a scenic part of Western Australia,
all for a great cause raising funds for the MS Society of
WA. Register now at rotaryteamchallenge.org.au/register
A night under the stars
It was a perfect summer’s night out at the Lilac Hill Cocktail Gala on Saturday,
6 February at Lilac Hill Park, Caversham. Hosted by Brittany Mucciarone, the
event kicked off with an acoustic set by singer Zoe Tsagalis. Three hundred
guests enjoyed drinks and canapes by the Swan River. The event also had a dash
of star power with West Coast Eagles footballer Nic Naitanui attending. Guests
bid in a live auction with the best item, a Black Caviar signed jersey, going for
$2,000. DJ John Karoll took over for the rest of the night and guests danced the
night away. The event raised over $22,000, which adds to the $4,000 Brittany
raised through a 12-hour soccer event held in October. Brittany’s mother
was diagnosed with MS four years ago and Brittany has been fundraising
for the MS Society for two years through her organisation – Face Up to MS.
For more information on her events, head to facebook.com/faceuptoms
Brittany with Nic Naitanui.
South West
Regional Round Up
Treendale Gardens update
Paula Kennedy, Respite Coordinator
As you know, in January 2016, devastating fires ravaged parts
of the South West affecting many people, including a number of
our Members and staff in various ways. Fortunately, Treendale
Gardens – MSWA’s residential and respite facility – were in a
position to offer emergency accommodation to Members and
staff until it was safe for them to return to their homes. Messages
were sent out to our local Individual Options team to let any
affected Members know that we were ready and willing to assist.
Some staff sought alternate accommodation after using
Treendale as a base whilst they got themselves organised.
Three Members and their families took up our offer and stayed
between two to five nights in different areas of the facility. One
family in the holiday unit, one family in respite and a Member in
the residential area. We are pleased that none of these families
lost their property in the fires and we were able to offer a safe
place to stay during the ‘watch and act’ and other emergency
warnings in their area. They have all since returned home.
Treendale Gardens itself was on bushfire advice and plans had to
be made in case we actually had to evacuate. Our staff members
were very composed and kept the Members and residents
reassured and fully up to date with what was happening, and
what plans were in place if we needed to evacuate.
We received calls and visits from several local MSWA staff
that are not based at Treendale, offering their assistance and
letting us know that they would have their phones near them
overnight should we need help to evacuate at short notice. We
even had an extra vehicle onsite, kindly loaned by Baptistcare,
to ensure we had sufficient onsite transport options should
we need to evacuate.
The latest
news from
the South
West
Treendale’s Bunnings Garden
Linda Kidd, Paula Kennedy and the Team
In December 2015, some of our residents approached our
local Bunnings with some of their great ideas about improving
our courtyards. Bunnings then generously offered to supply
and install an accessible fruit/veggie/herb garden in one
courtyard and some flowering plants in another.
The Bunnings Community Activities team came over and
developed a plan, consulting with residents and staff about
what they would like to see in the revamped areas. Plans
were then drawn up and a team of staff from Bunnings were
enlisted to come over and remove the old plants, put in new
soil (generously donated by Australind Landscaping Supplies),
and generally make the area ready for the big planting.
Once all the preparation work had been done, the team came
back and put in raised garden beds and tubs making it easier
for residents to view and care for the plants. They all worked
very hard and really improved these areas, and this has not
gone unnoticed by the residents and their families.
The garden has become a focal point for residents to gather
and chat whilst watering or just soaking up the atmosphere.
We are pleased to report that all the residents’ hard work is
now paying off and we have started harvesting vegetables
such as cucumbers, huge tomatoes, zucchini and mini
eggplants. This produce has gone into the residents’ kitchen
and been incorporated into the delightful evening meals
created by our wonderful cook.
The Treendale Gardens residents and staff would like to thank
Bunnings and their staff for their hard work and generosity.
One-stop shop Centre to open in Bunbury
It was a momentous day as Members and staff came together
in Bunbury to celebrate the build of MSWA’s new Community
and Health Services Centre. The high 30 degree heat
didn’t dull the excitement as our CEO Marcus Stafford and
Bunbury Mayor Gary Brennan turned the first sod on the
$1.5 million Centre.
Marcus said, “This is a fantastic occasion for us. We’re hoping
that by this time next year, the doors will be open and that it
is fully operational.
“We currently have 234 Members in the region, not including
their family and carers, who will all be able to access a wide
range of services at the purpose built Centre.”
Thankfully this was not required but we would like to
acknowledge all the MSWA staff involved for their assistance
and support both locally and over the phone in the metropolitan
area. Sue Shapland, General Manager of Member Services
would like to add:
“I would personally like to thank all of the staff, and especially
Paula, who did such a wonderful job of welcoming our
temporary guests whilst also organising everything in
readiness for a potential evacuation. The residents have
told me they were kept well informed and were both calm
and confident that they were in safe hands during this very
stressful time. The staff were all very supportive and many
had properties under threat or loved ones fighting the fires.
What a great team effort!”
CEO Marcus Stafford
and Bunbury Mayor
Gary Brennan turn the
first sod on MSWA’s new
Community and Health
Services Centre.
Located on Mason Road in Davenport, the Centre will be a
one-stop shop for people living with multiple sclerosis and
other neurological conditions.
A range of services will be on offer including occupational
therapy, physiotherapy and fatigue management. The large
block of land means more room for outreach sessions,
counselling, peer support groups and will serve as a base for
staff coordinating support for people living at home and staff
orientation and training workshops.
CEO Marcus Stafford in Treedale’s Bunnings
courtyard with residents.
The Centre will also include state of the art equipment such as a
physiotherapy gym with a tilt table, a MOTOmed limb exerciser,
parallel bars, exercise bikes, gym equipment, massage rooms,
disability access toilets and therapy rooms for group sessions.
Lynda Whitton was diagnosed with MS in 1996 and is
President of the Bunbury Outreach Group and a National
Advocate for MS Australia. Lynda said that she and other
Members are looking forward to the new Centre and the
services it will provide.
“It will be lovely to have all of the services under one roof.
Our current location is basically a modified house, so it’s
not ideal for people in wheelchairs and the physio room
doubles as a counselling room. And rather than having to
make an appointment or have someone come to visit, in the
new Centre we’ll just be able to knock on the counsellor’s
door and have a five-minute chat,” said Lynda.
“Another good thing will be having plenty of parking for
everyone. I think some people might be currently put off
coming to our current Outreach centre, especially if you’re in
a wheelchair or a walker, because there isn’t enough parking.
“I’d also like to thank the people of the South West who
donated to the yearly Swim for MS in Bunbury. In our first
year alone we raised more than $55,000 and all of the money
from the Swims has gone towards helping us to relocate to
this new Centre, so please keep supporting us because every
little bit helps.”
The build of the Centre has been made possible thanks to
the public’s donations and continued support including for the
Mega Home Lottery.
Wilson Outreach news
Southside Outreach news
Nicola Ryan, Outreach Coordinator
Angie Wallace, MSWA Member
NEWSFLASH: Due to popular demand, Wilson Outreach is
continuing to travel around the world in 2016! An exciting time
for us all, come and join in the mayhem any time you are passing!
Last year we ‘visited’ China, India, Africa and Alaska all from
the comfort of our ‘armchairs’. The Members participated by
coming to the Atrium at Wilson. We ‘travelled’ together as a
group doing various activities, and we had visiting groups to
share their stories, traditions and entertain us all. Of course we
all enjoyed eating the scrumptious local food from the different
countries thanks to Giselle our cook and her trusty volunteers.
When we weren’t travelling we enjoyed various quizzes,
board games and craft activities as well as ventured out for a
number of outings in the community.
Our wonderful Outreach support staff have already met and
planned the program for yet another fantastic year! Our
destinations will include New Zealand in February, Mexico in
May, Italy in August and finishing with Hawaii in November.
Time certainly doesn’t stand still for our Outreach Members!
Birthday time is always made special at Outreach, especially
if milestones are reached, of which we’ve already had two
in our first week back. Our lovely shop volunteer Darryl
celebrated her 70th and care support worker Jaci Plaisted
‘partied’ the day away for her 60th. We were even treated to
Jaci and Frank breaking out into a tango together!
We were all very happy to resume our Outreach get-togethers
after the Christmas break whether it was physio, massages,
lunches or just a good gossip with friends. We are very
fortunate to have these services and opportunities available
to us each week.
A big ‘thank you’ to our energetic, smiling taxi driver, Robert,
who supplied and had installed a TV aerial on the roof of our
building. What a difference it’s making!
What a treat also for carers attending the MSWA Rottnest
Island four day, three night Carers retreat! Carers John, Anne
and Lorraine joined others for a relaxing and well-deserved
break. Rosalie was the cook so we know they were well fed!
Member Angie went to City Beach respite (her first respite
stay!) while Doug went to Treendale Gardens.
Sadly, we have also had to say goodbye to two of our beautiful
Wilson Members already this year. Iris and Reemour were
part of our very popular Thursday OT craft day and shared
their talent as well as their lovely smiles with other Members.
Both ladies will be sadly missed and we pass on our sincere
condolences to Iris’s husband Peter and Reemour’s daughter
Glenis; both of whom are well known at Outreach as they
often dropped in with them.
Reflecting on our time at Outreach, looking back at what we
did last year and our plans for 2016 makes us realise how
important it is to be a part of such a caring family such as the
one here at MSWA.
Stop by for a cuppa and a piece of cake, stay the whole
morning to catch up with friends, come to have a chat
or play board games, or even if it’s just a quick “hello”
while passing through on the way to other appointments,
we encourage anyone who hasn’t yet visited us to make
a point of coming to Wilson and saying hi in the very
near future.
Fern River – our 2015 in review
Liz Stewart, Fern River Manager
Oh where did 2015 go! It was such a busy year for both
residents and staff at Fern River! We felt that we would like to
share some of the highlights of our year.
We were very lucky to be able to make a number of
improvements including having three new gabled patio
structures installed. Replacing the previous problematic
shade sails has now provided us with both protection and
shelter in all weather conditions. Not only are the residents
sheltered when getting in and out of vehicles, but they also
provide a large open communal entertainment and recreation
area and a home for our vegetable and herb gardens.
We also had a beautiful new communal kitchen installed,
including a dishwasher (that really excited the staff!). The new
kitchen provides a nicer, more effective working environment
for the staff who provide the delicious meals for residents. It
also has an accessible area where residents can enjoy getting
involved with the food preparation, if they choose to do so.
Several staff took up the challenge of volunteering one
weekend and manned the Bunnings BBQ to raise funds for
Fern River. Top of the list was a new wide screen TV that
now sits proudly in our communal recreation room where
residents are able to enjoy watching movies together. We
were also able to purchase additional gardening supplies
including a new worm farm, compost bin, raised garden beds,
herb planter, potting mix and seedlings.
We love celebrations and these included an Australia Day BBQ,
a family Easter brunch and egg hunt, a Halloween picnic, a
Saint Patrick’s Day outing to AQUA, many trips to the movies
and other outings including visits to Mandurah and Fremantle.
We enjoyed a multi-cultural lunch with staff bringing in a dish
from their homeland to share.
We also shared with residents, families and MSWA staff, a
lovely Christmas lunch with a very well-kept surprise visit
from Santa, complete with Harley trike, and the day was
thoroughly enjoyed by everyone who attended.
Fern River welcomed two new residents in 2015 who are settling
into their new routines and getting to know the other residents.
We are all now looking forward to what 2016 has in
store for us as we reflect back on a very busy but
enjoyable 2015!
It’s good to see two of our old Members Cheryl and Leah
back with us again. Our group is expanding – recently we
served 30 meals for Friday lunch – for Members, carers and
volunteers. That’s a lot of lasagne, Rosalie! Thank you!
Our physio, Sharon, was courtside for some of the Australian
Open Tennis in Melbourne – nothing like being there live for
the action! Last year she had a visit to the Galapagos Islands
and has produced a wonderful photo book of the amazing
wildlife – turtles, iguana and her favourite, the blue-footed
boobies (it’s a bird!) dance. We are all very envious, Sharon!
On behalf of all of us here at Southside, we wish everyone
a happy and healthy 2016. Well, as healthy as we can be!
News from Eastside and Northside
Outreach Groups at Beechboro Lodge
Zoe Harrison, Resource Coordinator
After a very busy year and the usual hectic December followed
by a relaxing Christmas break, I would like to welcome all
Members, vollies and staff back to Beechboro Lodge for 2016.
As always, the lead up to the Christmas break was hectic
with preparations for both the Eastside and Northside Groups
Christmas parties. Once again the very popular Julie’s Kitchen
provided plenty of lovely food and everyone was in the mood
for the festive cheer.
We were also lucky enough to have the WA Stage School
volunteer their time to sing Christmas carols at both parties,
and Paul Robinson performed carols and some classic singalongs so we could all join in and have a little dance. It is
always a really great way to end the year and everyone joins
in the fun and games.
We returned to Beechboro at the end of January just in time
to celebrate Australia Day. We had Aussie Day quizzes, played
some two-up and enjoyed a very Aussie BBQ.
From both groups and all the staff and vollies at
Beechboro, we wish everyone a belated happy new year
and we look forward to a fantastic 2016!
Albany Outreach news
Caroline Clark-Smith, Resource Coordinator
Welcome back to a New Year!
It has started off rather busy here in the Great Southern with
Swim for MS in February!
We have had a number of fundraising events happening
with sausage sizzles, movie nights, morning tea and raffles.
Congratulations to all those who participated by organising,
volunteering to help, or supporting these events. I did my bit
by having breakfast at three sausage sizzles; luckily not on
the same day.
It has been great to see a few more Members accessing
massage, especially those who have come from out of town and
managed to get one at short notice. If you are heading to Albany
on a Friday, give us a call on 9841 6651 to check if there is a
place available. Please leave a message so we can call you back.
After the swim, we resumed having guest speakers and
activities at the outreach group. If you have any ideas, please
let us know and we can see what we can do.
Maureen will be doing some talks on medications as well as
other health issues, so we look forward to those happening in
the months to come.
Last year we participated in the Stationary Ride for MS and we
hope to do that again later this year. Keep it in mind as it would
be great to have a few more participants this time around.
For those Members I have seen recently after not seeing
them for some time, it has been great to catch up and I
hope to see you again soon.
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To reserve your new Entertainment membership please contact us on:
Phone: (08) 6454 3122 | email: [email protected]
or go online to: www.mswa.org.au/entertainment
40%
easier to
open
The most preferred and compact
catheter for women.
Why not try today?
FREE
Sample
SpeediCath Compact Female
• The most preferred catheter
• The most compact catheter for women
• Easy grip handle for more hygenic catheterisation
To request a sample please call Coloplast on 1800 653 317
or visit www.coloplast.com.au/compactfemale
The Coloplast logo is a registered trademark of Coloplast A/S. © 2016-02 CON428. All rights reserved Coloplast A/S, 3050 Humlebaek, Denmark.

Autumn 2016 - The Multiple Sclerosis Society of Western Australia

Transcription

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