MSWA Bulletin Magazine Winter 16

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