MSWA Bulletin Magazine Autumn 16

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ulletin<br />

The Official <strong>Magazine</strong> of the MS Society of WA | mswa.org.au<br />

<strong>MSWA</strong> CEO Marcus Stafford and Bunbury Mayor Gary Brennan (L)<br />

at <strong>MSWA</strong>’s new Community and Health Services Centre in Bunbury<br />

<strong>Autumn</strong> 20<strong>16</strong><br />

Healthy feet<br />

NDIS trial site update<br />

Tips for successful communication<br />

South West regional round up

Inside | <strong>Autumn</strong> 20<strong>16</strong><br />

From the desk of the CEO<br />

Marcus Stafford<br />

The Multiple Sclerosis<br />

Society of WA (Inc.)<br />


29 Parkhill Way (08) 9365 4888<br />

Fax (08) 9451 4453<br />

Freecall 1800 287 367<br />

See Health Team Dept contacts on this page<br />

Member Services<br />

Directory<br />


Sue Shapland: 9365 4840<br />


Manager Community Care Programs,<br />

Gail Palmer: 9365 4851<br />


Wilson Outreach (Mon-Thurs): 9365 4830<br />

Beechboro Lodge (Mon, Fri): 9377 7800<br />

Southside Outreach (Fri): 9592 9202<br />

Bunbury Outreach (Wed): 9791 2472<br />

Albany Outreach (Fri): 9841 6657<br />


9 Ramsay Street 9791 2472<br />


1/21 Cammilleri Street 9754 2320<br />


Manager, Chris Rush: 9385 9574<br />


Manager, Liz Stewart: 9356 2747<br />


Manager, Jayne O’Sullivan: 9331 5780<br />



Manager, Linda Kidd: 9725 9209<br />

Contact Us<br />

If you would like to comment<br />

on anything you read in this<br />

<strong>Bulletin</strong> please email<br />

bulletin@mswa.org.au<br />

or write to<br />

<strong>MSWA</strong>, Locked Bag 2,<br />

Bentley DC WA 6983<br />

The <strong>Bulletin</strong> can also be viewed at<br />

mswa.org.au/bulletin<br />

Editorial Committee<br />

Greg Brotherson (Editor), Marcus Stafford (CEO),<br />

David Bugden, Sue Shapland, Ros Harman,<br />

Libby Cassidy, Sandra Wallace, Narelle Taylor,<br />

Leonie Wellington, Bhavna Jagtiani, and Dawn Burke.<br />

The Editor welcomes unsolicited submissions.<br />

All articles are subject to a reviewing process.<br />

The views expressed are those of the Authors<br />

and do not necessarily reflect the view of the<br />

Society’s staff, advisors, Directors or officers.<br />

From the desk of the CEO 3<br />

A message from the General<br />

Manager – Member Services 4<br />

<strong>MSWA</strong> Camps for 20<strong>16</strong> 4<br />

Letter from the Editor 5<br />

Letters to the Editor 6<br />

Bequests – Thank You 7<br />

Round-up of research and<br />

other items of interest 8-9<br />

Healthy Feet 10<br />

Our Health House 11<br />

NDIS / NDIS My Way WA<br />

Trial Sites Update - February 20<strong>16</strong> 12<br />

<strong>MSWA</strong> leading the way for WA research 13<br />

<strong>MSWA</strong> heads to Shenton Park 14<br />

MS Mega Home Lottery 14<br />

There’s an app for that! 15<br />

Tips for successful communication <strong>16</strong><br />

Zika Virus Alert <strong>16</strong><br />

Shaping your own destiny 17<br />

Shermar Moore 18<br />

Outside 19<br />

That’s life with Narelle 20<br />

Volunteer update 21<br />

Anytime Fitness Stadium Stair Race 22<br />

Swimming for MS 22<br />

Walking in memory –<br />

Rotary Team Challenge 20<strong>16</strong> 23<br />

A night under the stars 23<br />

South West regional round up 24-25<br />

Wilson Outreach news 26<br />

Fern River - our 2015 in review 26<br />

Southside Outreach news 27<br />

News from Eastside and Northside<br />

Outreach Groups at Beechboro Lodge 27<br />

Albany Outreach news 27<br />

NURSING Our nursing team is usually the first point of contact, after the neurologist,<br />

for anyone diagnosed with multiple sclerosis. We’re committed to providing holistic support<br />

so you have a greater understanding of what to expect from your condition.<br />

Manager: Lou Hatter on 9365 4809<br />

Hospital Liaison Nurse (S.C.G.H.): 9346 3333<br />

Community Nurses: 9365 4812, 9365 4838, 9365 4870, 9387 4846 or 9365 4888<br />

PHYSIOTHERAPY Physiotherapy aims to provide treatment interventions to develop and<br />

maintain mobility and function. Our physiotherapists are experts in movement and function,<br />

and work in partnership with Members to attain the highest possible level of independence.<br />

Manager: Marilyn Sylvester on 9365 4837<br />

Physiotherapy Office: 9365 4834<br />

OCCUPATIONAL THERAPY Occupational therapists work with Members, and clients,<br />

to enable them to continue their work and other interests for as long as possible, where they<br />

may otherwise have been limited by their condition.<br />

Manager: Sandra Wallace on 9365 4804<br />

An occupational therapy contact can be reached on 9365 4888<br />

COUNSELLING Some people need support to deal with the news that they have MS,<br />

and the challenges that may present over time. Our qualified counsellors provide a safe<br />

space for you to explore your concerns, in a safe and confidential environment.<br />

Manager: Lisa Papas on 9365 4836<br />

Support Counsellors: 9365 4808 or 9365 4811 Peer Support Program: 9365 4808<br />

Welfare Officers & Funding Locators: 9365 4889 or 9365 4835<br />

INDIVIDUAL OPTIONS We are able to supply limited in-home support such as<br />

assistance with personal care for people with disability due to multiple sclerosis, to help<br />

them remain in their homes. Care and supports are provided through a combination of<br />

funding from the Disability Services Commission (DSC) and our own fundraising efforts.<br />

We also manage DSC allocated individually funded care packages.<br />

Contact us on 9365 4851 for more information.<br />


<strong>MSWA</strong> provides separate recreation camps for Members, carers, and families, primarily<br />

funded by Lotterywest, and for a nominal cost to participants. These camps provide a<br />

break from daily routines, and strengthen friendships and support networks.<br />

Coordinator for Camps & Recreation: 9365 4843<br />

“Opportunities don’t happen. You create them.”<br />

Chris Grosser<br />

Without a doubt, 2015 was the year of creating opportunities<br />

here at the MS Society. Opportunities to bring us closer to our<br />

vision of a world free from multiple sclerosis, and our purpose<br />

of helping people living with MS to get the best out of life.<br />

In the last <strong>Bulletin</strong>, I spoke to you about our plans to grow our<br />

strategic footprint, fund local research and prepare ourselves<br />

for the NDIS.<br />

And if 2015 was the year of opportunities, 20<strong>16</strong> is the year<br />

of action!<br />

In January this year, we announced the results of our inaugural<br />

<strong>MSWA</strong> Research Funding Round. Out of our record $1.5<br />

million contribution to MS research nationally, half a million<br />

dollars was set aside to fund Western Australian researchers.<br />

This money is not just our way of showing support for local<br />

researchers. The research is of the highest quality and<br />

fits within the global effort. In the long term, it is our aim<br />

to financially support and grow the talent in WA so that we<br />

become leaders in MS research in Australia and are at the<br />

heart of the search for a cure.<br />

The calibre of applicants was truly outstanding and as a<br />

consequence we have committed almost one million dollars<br />

to fund five local researchers for the next two years.<br />

We don’t have the medication to completely stop MS yet<br />

but we have ones to slow its progression, so every piece of<br />

research undertaken is very important. Learn more about the<br />

researchers and their work on page 13 of this <strong>Bulletin</strong>.<br />

We then rounded off January with the official announcement<br />

of our plans to build a new high support accommodation<br />

facility at the site of the old Shenton Park Hospital.<br />

The $2 million facility will offer people with disabilities<br />

accommodation with a private bedroom, lounge, kitchen and<br />

bathroom, so they have the best of both worlds – around the<br />

clock care and a great place to call home.<br />

The facility will be positioned in a fantastic location with good<br />

public transport links and means family and friends will be<br />

able to visit easily.<br />

I’m thankful to the State Government for the opportunity to build<br />

accommodation that meets the needs of our Members in Perth.<br />

Finally, in February I headed down to Bunbury to check on the<br />

progress of our current build and to meet with Mayor Gary<br />

Brennan as he joined me in turning the first sod on our new<br />

$1.5 million Community and Health Services Centre.<br />

It was a significant occasion, one I’m glad Members and staff<br />

in Bunbury could be a part of.<br />

The Centre fills an important need in the South West as we’ve<br />

outgrown our current Bunbury Outreach Centre and the<br />

demand for our services continues to grow.<br />

The purpose built Centre will be a one-stop shop for the 234<br />

Members in the region, including their family and carers, who<br />

will all be able to access a wide range of services.<br />

It will also be ‘open for business’ for people with other<br />

neurological conditions who are in receipt of NDIS funding.<br />

It is exciting times for the Society and our Members and it’s<br />

important to acknowledge at this juncture that it is thanks to<br />

the public’s continued donations and support as well as the<br />

Mega Home Lottery that we have been able to put these plans<br />

in place to build the new facilities.<br />

We’re proud of our leadership position but we’re by no means<br />

resting on our laurels.<br />

Our strategic footprint will continue to grow with funds already<br />

being allocated for a high support accommodation facility in<br />

Albany and the preliminary identification of suitable land in<br />

the northern suburbs.<br />

The team across WA is committed to building a bright<br />

future for people living with multiple sclerosis and other<br />

neurological conditions in Western Australia. Thank you<br />

for allowing us to be part of your journey.<br />

2 <strong>Autumn</strong> 20<strong>16</strong> The MS Society of Western Australia The MS Society of Western Australia <strong>Autumn</strong> 20<strong>16</strong> 3

A message from the General Manager<br />

– Member Services Sue Shapland<br />

Letter from the Editor<br />

Dr Greg Brotherson<br />

“If you change the way you look at things,<br />

the things you look at change.”<br />

Wayne Dyer<br />

As they say, one of the only constants in life is change!<br />

Whilst change can be unsettling, it can also bring great<br />

anticipation and excitement especially when the outcomes<br />

will be for the better.<br />

The National Disability Insurance Scheme (NDIS) is one such<br />

change. This change has been a long time coming and the<br />

outcome will be more timely access to funded supports<br />

for people living with disability. Greater equity of access to<br />

funding will bring opportunities for more people to live a<br />

better life. Mark Douglas, <strong>MSWA</strong> NDIS Operations Manager,<br />

has provided another NDIS WA trial update on page 12 of<br />

this <strong>Bulletin</strong>. We are still eagerly waiting to hear what the<br />

WA timeline for the roll out will be and will keep you posted.<br />

<strong>MSWA</strong> staff will be providing our Members with relevant<br />

information and support to determine eligibility under the<br />

NDIS and register for planning.<br />

This year will be another busy but rewarding year for <strong>MSWA</strong><br />

as we see more of our strategic plan come to life. We recently<br />

attended a ceremonial turning of the sod at the site of our<br />

Bunbury Community and Health Services Centre; what a pleasant<br />

surprise to see the formwork already placed in readiness for<br />

the pad to be poured. The Bunbury Outreach group has been<br />

relocated twice since 2003 and each time has been for the<br />

better, but never ideal. This new building will provide us with<br />

a purpose designed and built Centre for our regional services.<br />

Plans include a physiotherapy gym, large meeting areas, office<br />

space and consulting rooms providing a much needed base for<br />

the nursing and allied health staff working in the area. We will be<br />

able to share the progress with you in the next <strong>Bulletin</strong>.<br />

<strong>MSWA</strong> Camps for 20<strong>16</strong><br />

We are also progressing our plans for additional high<br />

support accommodation units in both Shenton Park and the<br />

northern suburbs, where we will also create a much needed<br />

Services Centre.<br />

Last year we sought Member feedback regarding supports for<br />

the newly diagnosed and peer support opportunities. We have<br />

employed a Health Education and Peer Support Coordinator,<br />

Sarah, who is already putting together the 20<strong>16</strong> program.<br />

As you may be aware <strong>MSWA</strong> has made very significant<br />

contributions, over $1 million annually, towards MS research<br />

in Australia. This year we have allocated part of these funds<br />

to five WA researchers to support their projects; read more<br />

about this in this edition on page 13.<br />

This year has started off with a few challenges. Our hearts went<br />

out to those affected by the devastating January bushfires in<br />

and around Yarloop and Harvey. Treendale Gardens was able<br />

to help in a small way by providing shelter to some evacuees<br />

whilst also preparing for possible evacuation.<br />

Then there is the heatwave we have had to contend with!<br />

I hope you have managed to remain cool and rested at night.<br />

Please remember if you need any advice regarding<br />

managing any aspects of your MS, or you want specific<br />

information, don’t hesitate to give Member Services a call<br />

on 9365 4840 or email us at Get-In-Touch@mswa.org.au.<br />

<strong>MSWA</strong> provides recreation camps for Members, carers and families, primarily funded<br />

by Lotterywest, and at a nominal cost to participants. These camps provide a break<br />

from daily routines, and strengthen friendships and support networks. These services<br />

are provided at little or no cost to financial Members of the MS Society.<br />

Here are the dates for camps being held in the coming few months:<br />

Members Camp at Moore River: <strong>16</strong> May – 19 May<br />

Members Camp at Woodman Point: 5 September – 8 September<br />

Family Camp at Woodman point: 27 September – 30 September<br />

For further enquiries and bookings, contact Sumit Sandhu - Camps coordinator on (08) 9365 4843.<br />

A first and positive result for<br />

people with primary and secondary<br />

progressive multiple sclerosis<br />

Professor Alan Thompson, Chairman of the International<br />

Progressive MS Alliance Scientific Committee, said of<br />

Ocrelizumab, “It is not only a source of hope, but also an<br />

important milestone that will further inform development<br />

for effective treatments for everyone with progressive forms<br />

of MS.”<br />

Happy New Year everyone, and what an exciting year it now<br />

promises to be! On behalf of the <strong>Bulletin</strong> team here at the<br />

treadmill we hope that you did not find the extreme heat too<br />

draining. With the seasons as a guide, this is the first of four<br />

<strong>Bulletin</strong>s you will receive for 20<strong>16</strong>.<br />

In the past two editions of your <strong>Bulletin</strong> we have been<br />

discussing the International Progressive MS Alliance, which<br />

continues to grow and expand. With more than 2.3 million<br />

people worldwide currently living with multiple sclerosis, and<br />

with more than half of these people living with a progressive<br />

form of multiple sclerosis, that a concerted coordinated effort<br />

by this global alliance of multiple sclerosis societies is taking<br />

shape will provide each of us with hope of a breakthrough<br />

treatment in 20<strong>16</strong>.<br />

This global alliance includes MS Research Australia (MSRA);<br />

Associazione Italiana Sclerosi Multipla (Italy); Deutsche<br />

Multiple Sklerose Gesellschaft (Germany); Esclerosis Múltiple<br />

España (Spain); Multiple Sclerosis International Federation<br />

(UK); Multiple Sclerosis Society of Canada (Canada); Nationale<br />

Belgische Multiple Sclerosa Liga (Belgium); National Multiple<br />

Sclerosis Society (USA); Scleroseforeningen (Denmark); and<br />

Stichting MS Research (The Netherlands).<br />

While currently there are no approved treatments for primary<br />

and secondary progressive multiple sclerosis, the people at<br />

MSRA tell us that the recent clinical trial results of Ocrelizumab<br />

make it the first therapy to have a beneficial effect in the<br />

progressive group of patients.<br />

Although these are early results from the trial and show a<br />

relatively small effect on progression, we are also told that<br />

the results have created a great deal of excitement in the MS<br />

research community as it raises hope that there may soon be<br />

a treatment that can be prescribed for people with progressive<br />

multiple sclerosis (Reference MS Wire, January 20<strong>16</strong>).<br />

Commenting on Ocrelizumab Phase III trial, Lawrence<br />

Steinman, Professor of Neurology at Stanford University<br />

said, “The results are on the mild side, but it’s a great start.<br />

An absolute gift – it’s the first time that anything’s worked in<br />

the field.”<br />

We have also been informed that Ocrelizumab has generated<br />

quite a buzz in the research community by creating an added<br />

impetus for a new direction of research into progressive MS<br />

treatments. The Alliance has called for planning grants which<br />

resulted in applications for 52 different networks involving<br />

480 researchers from around the world. The Scientific<br />

Steering Committee of the Alliance is currently evaluating all<br />

proposals to determine the awards.<br />

Further applicants will be accepted from Planning Grant<br />

recipients in mid-20<strong>16</strong> and grants for the Collaborative<br />

Network Awards will be awarded in late 20<strong>16</strong>. The goal<br />

of these awards is to establish teams of excellence that<br />

engage in transformative research leading directly to clinical<br />

application and tangible improvements for people living with<br />

progressive forms of multiple sclerosis.<br />

The sponsor for Ocrelizumab, Roche, plans to submit the<br />

full data from the clinical trials to the US Food and Drug<br />

Administration early this year. Submissions to the regulatory<br />

authorities in other countries are likely to follow later in 20<strong>16</strong>.<br />

Do you want to receive the <strong>Bulletin</strong> online?<br />

Want monthly information updates?<br />

Register your email address today to start receiving our<br />

monthly Vitality e-newsletter and the <strong>Bulletin</strong> magazine online.<br />

Just email bhavna.jagtiani@mswa.org.au or call 6454 3114<br />

and let us know your current email address.<br />

4 <strong>Autumn</strong> 20<strong>16</strong> The MS Society of Western Australia The MS Society of Western Australia <strong>Autumn</strong> 20<strong>16</strong> 5

Letters to the Editor<br />

We cannot get over how much the MS Society of WA has<br />

helped us, especially over the past two years when Tim has<br />

needed more assistance and equipment than in the previous<br />

25 years of living with MS.<br />

The staff in the many departments we have utilised are all<br />

wonderful as they guide us through the journey of MS. The<br />

friendliness and professionalism of each staff member is of<br />

the highest order. To mention a few:<br />

Associate care provides seamless home help every week.<br />

The office staff are great and the care workers well trained<br />

and very positive individuals.<br />

Marilyn Sylvester and her physio team help keep up Tim’s<br />

physical strength and abilities allowing him to be able to<br />

function with some independence and dignity at home.<br />

The OT Department with Sandra Wallace and Brea Carlton<br />

have provided us much assistance with wheelchair funding,<br />

posture management, hoist training and extra things needed<br />

to manage at home.<br />

Michaela Kilroy in counselling helped us both cope better with<br />

the difficulties of multiple sclerosis.<br />

Irene Willis and Sumit Sandhu provide carer related activities<br />

and regular monitoring of the support carers need.<br />

The nursing staff including Lyn Reeves and Jill Crombie have<br />

responded to our concerns with phone calls, emails, chats at<br />

the Wilson Centre, home and in hospital.<br />

The respite provided by the Society has been so important<br />

for us. Treendale Gardens staff have been so welcoming<br />

which allows me respite and also a chance to visit my family<br />

overseas. We also love the opportunity for holidays together<br />

using the family unit there.<br />

As you can see, we have a long, long list and unfortunately<br />

cannot name more of your able staff on this occasion. We can<br />

end with a big shout out to staff who provide such awesome<br />

fundraising and fund managing that directly impacts Members<br />

in a positive way.<br />

I want to thank you and all staff again for the amazing work<br />

the Society does to enable us to feel much more empowered<br />

and centred as Tim and I continue experiencing life with<br />

multiple sclerosis.<br />

Tim and Diane Johnson<br />

I have just turned 60 and maybe it’s time for a midlife crisis.<br />

In fashion, orange is the new black and maybe 60 is now<br />

the new midlife, it certainly feels like it for me as I have<br />

recently been testing the boundaries of my relatively tame<br />

and pedestrian life with many new adventures.<br />

After five long years<br />

I have finally finished<br />

my Bachelor of Arts in<br />

Theology and I feel like<br />

a bottle of champagne<br />

bubbling up after the<br />

cork is released. So,<br />

here I am, free from<br />

the millstone of study,<br />

at the new midlife of<br />

60 looking around for<br />

things to do.<br />

I had a very conventional birthday barbecue at home which<br />

was catching up with a snapshot of my life. Lots of family,<br />

even a few from my ex-husband’s family, people from my<br />

pre-MS career, post-MS people from my church and people<br />

who I have met on my life’s journey. It was humbling that so<br />

many people took the time to celebrate my birthday with me.<br />

Thank you<br />

My family and I marked the occasion by doing a freefall<br />

tandem parachute jump from 14,000 feet. We landed on<br />

the soft sand of the beach at Jurien Bay and started a new<br />

tradition of an annual weekend away together as a family, a<br />

great way to retain connection. Two ticks for the bucket list.<br />

My MS still improves and I picked up a half completed cross<br />

stitch which I started before my diagnosis. I’m taking on this<br />

new challenge in my midlife. The stitches are not quite as<br />

precise as previously and I am making many mistakes but<br />

I’m happy and hopeful that the completed work will look okay.<br />

I have enrolled in an intensive course at Royal Perth Hospital<br />

as a Chaplain Intern and am contemplating a clinical trial for<br />

a non-MS related condition which includes stem cells and<br />

ceramic printing; it sounds intriguing. I have just bought a new<br />

car, very sporty looking, hmm…how midlife crisis.<br />

I have also just joined the State Emergency Service (SES) as<br />

a volunteer radio operator. This is a real job, doing real things<br />

and making a real difference in people’s lives. I feel complete<br />

doing this work.<br />

Midlife must agree with me as I was approached by someone<br />

who asked me to take part in a small film, he liked my energy.<br />

Wow, midlife crisis, bring it on, life just keeps getting better<br />

and better.<br />

Julie Nelson-White<br />

I am a Member and attend the Beechboro Outreach Group.<br />

I was first diagnosed in Perth over 18 years ago. My symptoms<br />

seem to have stabilised years ago and I am still walking about;<br />

only slowly are things deteriorating. I’m one of the lucky ones.<br />

I’m writing to offer my congratulations to our CEO Marcus<br />

Stafford on his well-deserved award of 2015 National<br />

Not-for-Profit Manager of the Year, given by the Australian<br />

Institute of Management.<br />

We all love it when Marcus visits us at Beechboro, spreading<br />

good cheer and keeping us informed and up to date on all<br />

matters regarding the Society and current research. It would<br />

be pleasant to meet some of the other hardworking and<br />

dedicated people mentioned in our <strong>Bulletin</strong>, perhaps at least<br />

once a year.<br />

I would also like to express our appreciation to Dr Greg<br />

Brotherson and congratulate him for an ever increasing<br />

standard of excellence in the presentation of the <strong>Bulletin</strong>.<br />

As a Member for many years, I have seen Dr Brotherson’s<br />

editorship of the <strong>Bulletin</strong> develop the journal into one of the<br />

highest quality magazines of its kind in Western Australia.<br />

Finally, I wish to thank Ms Sue Shapland for her most<br />

informative article in the <strong>Bulletin</strong> (Summer 2015). It has taken<br />

years for me, and I think my doctors, to recognise that my<br />

form of multiple sclerosis has been the progressive kind, with<br />

relapses gradually decreasing, but secondary symptoms of<br />

neurological disability gradually increasing.<br />

I feel I have been let off lightly so far, compared with many of<br />

my fellow sufferers, who I commend here at Beechboro, for<br />

their courage, cheerfulness and ever-present good manners.<br />

The weekly trips to Beechboro and the excellent care given by<br />

staff, gym and physio specialists, makes us feel we are part<br />

of a warm, generous family and for this I’m sure all of us offer<br />

heartfelt thanks to the MS Society of WA.<br />

Valerie Melrose<br />

Giving a donation or leaving a gift in your Will to <strong>MSWA</strong>, can open<br />

up many exciting opportunities for you to make a big difference to<br />

the lives of people with MS. Your gift, combined with those from<br />

other <strong>MSWA</strong> supporters, will make a powerful impact and help us<br />

to continue our very important work.<br />

The Society would like to acknowledge the following people for<br />

their generous gifts:<br />

Mr & Mrs D’Angelo<br />

Ms. Ettles<br />

For more information on making a donation to the MS Society or<br />

leaving a gift in your Will, please call Michael van Oudtshoorn on<br />

(08) 6454 3<strong>16</strong>8 or email Michael.VanOudtshoorn@mswa.org.au<br />

Michael van Oudtshoorn<br />

Planned Giving Manager<br />

6 <strong>Autumn</strong> 20<strong>16</strong> The MS Society of Western Australia The MS Society of Western Australia <strong>Autumn</strong> 20<strong>16</strong> 7

Round-up of research<br />

and other items of interest<br />

Sue Shapland RN, BN<br />

Bringing you MS research updates from around<br />

the world:<br />

Multiple Sclerosis Society UK<br />

Ocrelizumab is an intravenous infusion treatment, developed<br />

by Hoffmann-La Roche, that has been in phase three clinical<br />

trials looking at its use in primary progressive MS and<br />

relapsing MS.<br />

Two phase three trials completed in June 2015 had positive<br />

outcomes reported as a treatment for relapsing-remitting MS<br />

against interferon beta-1a (also known as Rebif). The trials<br />

involved over 1,600 people and after two years, the study<br />

is reported to show that Ocrelizumab reduced the annual<br />

relapse rate by 46% and the number of lesions in the brain,<br />

as measured by MRI scans, by 94%.<br />

Update on Ocrelizumab<br />

Ocrelizumab works by targeting a certain kind of immune cell<br />

that can contribute to the damage to the nervous system,<br />

including the nerve cells and the protective covering around<br />

nerve fibers. It is taken by intravenous infusion twice a year.<br />

In the clinical trial data released last spring, which covered<br />

732 people with primary progressive MS, people who took<br />

the drug had a 24 percent reduction in the progression of<br />

disability after 12 weeks compared to those who received<br />

a placebo. Study participants on the experimental medicine<br />

also experienced slower declines in walking ability and brain<br />

volume than people in the control group.<br />

The reason that the new drug is generating so much interest,<br />

though, is that it’s the first time a therapy for primary<br />

progressive MS has had any impact at all.<br />

And it’s the first MS drug to ever receive a “breakthrough”<br />

designation from the Food and Drug Administration, which<br />

puts the experimental medicine on a fast track to get through<br />

the review process as quickly as possible. The agency granted<br />

the designation in February this year.<br />

UK MS Trust<br />

How common is nerve pain in early MS?<br />

This study of 377 people with MS examined how common<br />

nerve pain was in early MS.<br />

Nerve (neuropathic) pain is caused by damage to the nerves<br />

in the brain and spinal cord and includes trigeminal neuralgia,<br />

the MS hug, Lhermitte’s sign and altered sensations such as<br />

pins and needles, numbness, crawling or burning feelings.<br />

Participants who were experiencing nerve pain, also had<br />

significantly higher levels of depression, fatigue and disability.<br />

The researchers suggested that treatment of the pain should<br />

also take these other factors into account, to help improve<br />

overall wellbeing.<br />

What effect do disease modifying drugs have on<br />

disability progression?<br />

Disease modifying drugs (DMDs) work by interacting with<br />

different parts of the immune system to treat the inflammation<br />

caused by MS, reducing the number and severity of relapses.<br />

There is also some evidence that the DMDs can reduce<br />

disability progression (the build-up of disability over time).<br />

Thirteen studies, of between one and three years, with a total<br />

of 9,788 participants were included in the analysis.<br />

The review found that overall, the DMDs reduce the risk<br />

of increasing disability compared to participants taking<br />

a placebo. Further analysis revealed that there were no<br />

differences in the effect on disability regardless of how the<br />

drug was taken or whether it was used as first or second<br />

line treatment.<br />

What MS symptoms affect work?<br />

This study in the USA examined<br />

four key MS factors –<br />

depression, cognition, fatigue<br />

and motor function – to<br />

investigate their relationship<br />

with employment in a group of<br />

53 people with MS.<br />

Participants took three to<br />

four hour long assessment<br />

sessions completing various<br />

tests and questionnaires to assess their<br />

cognition, motor function, mood and fatigue.<br />

The study found that cognitive, motor function and fatigue<br />

test scores, as well as higher EDSS scores, were significantly<br />

related to unemployment.<br />

The researchers concluded that health professionals could<br />

support people with MS and help them to learn management<br />

techniques to deal with, or compensate for, fatigue and<br />

cognitive symptoms that could help them stay employed.<br />

Emotional changes in people with MS<br />

This French study looked<br />

at emotional changes in<br />

60 people with relapsingremitting<br />

MS (RRMS) and 41<br />

with primary progressive MS<br />

(PPMS). Each person with MS<br />

in the study was matched to a<br />

control participant (who did not<br />

have MS), for age, gender and<br />

level of education.<br />

The study found that emotional changes are common in<br />

both people with RRMS and PPMS and can be found in people<br />

who do not meet the criteria for a diagnosis of depression<br />

or anxiety.<br />

As even subtle emotional changes can have an impact on<br />

quality of life, the researchers concluded that a health<br />

professional’s ability to recognise these smaller changes help<br />

people with MS access the necessary support to manage<br />

emotional changes they experience.<br />

MS Society of Canada<br />

Researchers link the ‘clock’ hormone melatonin to<br />

seasonal MS relapses<br />

MS relapse activity follows the<br />

seasons with attacks generally<br />

more frequent in spring and<br />

summer. Although the reason<br />

for this seasonal pattern is<br />

unknown, one hypothesis<br />

suggests that a factor provoked<br />

by the environment that rises<br />

and falls with the time of year<br />

may be responsible.<br />

An international team of scientists from Argentina and the<br />

United States identified a possible candidate; the hormone<br />

melatonin, whose levels peak over the autumn/winter months<br />

and then drop off in the spring/summer months.<br />

The authors provided strong evidence that melatonin protects<br />

against MS relapses, decreasing the number and severity of<br />

relapses during the autumn and winter months. This protective<br />

effect is diminished in spring and summer as melatonin<br />

levels subside.<br />

Diet and Exercise<br />

The effects of diet on MS<br />

treatment and progression are<br />

uncertain. Although a topic of<br />

interest for the MS community,<br />

conclusive evidence supporting<br />

dietary claims is scarce.<br />

Research investigating the<br />

effect of dietary manipulation<br />

on MS is challenging, as these<br />

types of studies are difficult to design and control for.<br />

Exercise has demonstrated benefits above and beyond<br />

fitness, including neuroprotection, neurogenesis (the birth of<br />

new neurons), and improved cognitive function.<br />

Dr Amy Latimer-Cheung from Queen’s University published an<br />

extensive review highlighting data on the effects of exercise<br />

in MS. Many studies demonstrated that exercise training<br />

improved mobility, fatigue and quality of life among people<br />

living with MS.<br />

There are a number of clinical trials under way around the<br />

world that are providing clearer answers as to whether<br />

exercise interventions may improve MS disease.<br />

Read more at:<br />

mswa.org.au/<br />

researchupdate<br />

8 <strong>Autumn</strong> 20<strong>16</strong> The MS Society of Western Australia The MS Society of Western Australia <strong>Autumn</strong> 20<strong>16</strong> 9

Healthy Feet<br />

Our Health House<br />

Lisa Papas, Counselling and Social Welfare Manager<br />

What is so important about my feet?<br />

Healthy feet are essential for comfort, stability, balance and<br />

healthy ageing.<br />

Having healthy feet allows you to be active which has<br />

numerous benefits such as:<br />

• helping you to keep weight stable;<br />

• maintaining and improving muscle and bone strength; and<br />

• improving emotional and mental health.<br />

When feet are healthy, it allows for proper foot and body<br />

mechanisms, which helps prevent falls.<br />

Even wearing footwear is more comfortable when your feet<br />

are well looked after.<br />

Caring for Feet<br />

A large proportion of <strong>MSWA</strong> Members may require assistance<br />

with their basic foot and nail care.<br />

Mobility changes, poor manual dexterity or poor vision can<br />

make it too difficult for self-care of feet. For some people,<br />

accessing basic foot and nail care is difficult, due to costs,<br />

transport and not having anyone willing or able to assist.<br />

Being unable to perform these tasks can lead to a degree of foot<br />

and nail neglect which can contribute to more serious issues.<br />

It is important to make sure that the person tending to your<br />

foot care is suitable. Some people will access foot care<br />

services through a podiatrist and some will rely on family<br />

members or friends for help with this.<br />

Care support workers may file nails and check length but they<br />

are not permitted to cut nails. If a cutting service is required,<br />

care support workers must refer the request to their supervisor.<br />

It is always recommended that if you have any of the conditions<br />

listed below, you should see a podiatrist regularly for toe nail<br />

cutting and foot care:<br />

• Diabetes<br />

• Peripheral Neuropathy (numbness, tingling in legs or feet<br />

and weak muscles in legs)<br />

• Peripheral Vascular Disease (circulation problems in legs,<br />

diseases of arteries)<br />

• A current, or history of having, a foot ulcer<br />

• A foot or leg amputation<br />

• Ingrown toenails<br />

• Are taking anticoagulant medications<br />

• Have problems with chronic swelling of feet or legs<br />

Many moons ago I had the privilege of working in New Zealand<br />

as a counsellor in the field of addictions. As you would imagine,<br />

working in that area had its own challenges and rewards.<br />

It was through this work that I was introduced to the concept of<br />

Te Whare Tapa Wha which is a model developed to understand<br />

the four cornerstones of how Maori people conceptualise<br />

health. I have often used this model with people to explore<br />

balance and wholeness.<br />

Te Whare Tapa Wha is embedded in the concept of a four<br />

sided house. Should one of the four ‘walls’ be missing or in<br />

some way damaged, a person, or a collective may become<br />

unbalanced and the house falls down.<br />

In a traditional Maori approach, the inclusion of the wairua,<br />

(spiritual health), the role of the whanau (family), and the<br />

balance of the hinengaro (mind), are as important as the<br />

physical presentations of illness.<br />

I always felt this was a lovely idea and lent itself to an<br />

understanding of the wider concept of the whole person.<br />

Have a read of the explanation of the four elements and have<br />

a think about how this model fits with your idea of health and<br />

wholeness.<br />

Taha tinana (physical health) – the capacity for physical<br />

growth and development.<br />

Our physical being supports our essence and shelters us<br />

from the external environment. For Maori people, the physical<br />

dimension is just one aspect of health and well-being and<br />

cannot be separated from the aspect of mind, spirit and family.<br />

Taha wairua (spiritual health) – the capacity for faith and<br />

wider communication.<br />

Health is related to unseen and unspoken energies.<br />

The spiritual essence of a person is their life force. This<br />

determines us as individuals and as a collective, who and what<br />

we are, where we have come from and where we are going.<br />

A traditional Maori analysis of physical manifestations of<br />

illness will focus on the wairua or spirit, to determine whether<br />

damage here could be a contributing factor.<br />

Taha whanau (family health) – the capacity to belong, to<br />

care and to share where individuals are part of wider social<br />

systems.<br />

Whanau provides us with the strength to be who we are. This<br />

is the link to our ancestors, our ties with the past, the present<br />

and the future.<br />

Understanding the importance of whanau and how whanau can<br />

contribute to illness and assist in curing illness is fundamental<br />

to understanding Maori health issues.<br />

Taha hinengaro (mental health) – the capacity to<br />

communicate, to think and to feel mind and body are<br />

inseparable.<br />

Thoughts, feelings and emotions are integral components of<br />

the body and soul.<br />

Taken from: publichealthworkforce.org.nz/Maori-publichealth-perspective.aspx<br />

Bringing these concepts to counselling work and my<br />

discussions with people, helped me to work with greater<br />

understanding of both indigenous communities and the wider<br />

community concepts of whole health or holistic wellbeing.<br />

Australia’s indigenous communities have a very similar<br />

concept of health that is linked to the delicate balance and<br />

cultural attachment to the life force of the land, spiritual<br />

practice, family connections and psychological wellbeing.<br />

When one or more of these elements are out of kilter, health<br />

and wellbeing suffer.<br />

In my experience, embedding these cultural concepts into my<br />

work as a counsellor gives people another way to envisage<br />

their own health journey.<br />

Take on a challenge if you wish…get a piece of paper and<br />

draw four quadrants. Name each quadrant:<br />

• Mind<br />

• Body<br />

• Spirit<br />

• Family/Community<br />

Consider each area.<br />

Are there things that affect your health house walls?<br />

What can you do to keep your walls strong?<br />

Talk to your family or support person about your health house<br />

and how it looks for you.<br />

You can always contact us at the <strong>MSWA</strong> Counselling<br />

department on 9365 4808 to talk about balance and<br />

wellbeing and how you can work towards achieving this.<br />

There are some great lessons to be learned from some<br />

of our oldest cultures and their concepts of wellbeing.<br />

I hope you keep your walls strong and your house full!<br />

If you are unable to maintain your own foot care and there is<br />

not someone else who attends to this for you, it is important<br />

that you seek alternative care. The following list of affordable<br />

and suitable options may be helpful:<br />

• Your GP can arrange five private allied health visits per<br />

year for a person with MS – this includes podiatry. The<br />

cost is usually covered or subsidised by Medicare. This<br />

service is arranged by your GP through a Chronic Disease<br />

Management Plan (previously known as an Enhanced<br />

Primary Care Plan).<br />

• Many local councils in WA provide subsidised podiatry<br />

clinics to seniors and people with a pension or disability<br />

pension card. Contact your local council to enquire. Head<br />

to elections.wa.gov.au/elections/local/council-list/ for a full<br />

council list and their contact numbers.<br />

• In-home podiatry services are also available for eligible<br />

Home and Community Care (HACC) clients in some<br />

local councils.<br />

• Active Podiatry in O’Connor and Canning Vale provide an<br />

in-home service to HACC assessed clients. They also<br />

provide a subsidised podiatry service for those with a<br />

Chronic Disease Management Plan. Phone 9337 1912 to<br />

get in contact.<br />

• The University of Western Australia offers a podiatry clinic<br />

with services run during the University semester. Podiatry<br />

students under the supervision of qualified podiatrists<br />

provide a full range of podiatry services for around 50%<br />

less cost than private practices. Have a look at their website<br />

meddent.uwa.edu.au/podiatry/clinic or phone 6488 4522.<br />

There is a podiatry directory listed with Department of<br />

Health and public funded podiatry services throughout<br />

metro and rural WA. To access this directory visit<br />

health.wa.gov.au<br />

10 <strong>Autumn</strong> 20<strong>16</strong> The MS Society of Western Australia The MS Society of Western Australia <strong>Autumn</strong> 20<strong>16</strong> 11

NDIS / NDIS My Way WA Trial Sites<br />

Update – February 20<strong>16</strong><br />

Mark Douglas, Manager Operations, <strong>MSWA</strong> NDIS Business Development<br />

<strong>MSWA</strong> leading the way<br />

for WA research<br />

The launch of the concept and trials for a National Disability<br />

Insurance Scheme (NDIS) in Australia was the culmination of<br />

years of advocacy and lobbying from both the disability and<br />

carers sectors and a Productivity Commission Report. It is the<br />

largest reform of the disability sector in Australia’s history.<br />

Western Australia agreed to participate in a two-year trial of<br />

the NDIS that commenced in July 2014. WA is the only state<br />

hosting two versions; the National model in the Hills area<br />

and the WA State Government model NDIS My Way in the<br />

Southwest and now Cockburn and Kwinana.<br />

In my previous articles I have discussed these two different<br />

models of the NDIS being trialled in Western Australia and<br />

the benefits of comparing them prior to a final decision being<br />

made as to which model would be implemented in here.<br />

With the WA trials due to conclude in June this year and<br />

full roll out of the scheme expected to commence from<br />

July, a decision has not yet been announced regarding<br />

the future model of the NDIS in Western Australia or the roll<br />

out timetable.<br />

It is vital that this decision is made without further delay so that<br />

Governments bilateral agreements can be completed. Once<br />

these agreements have been signed, information regarding<br />

how the NDIS will be rolled out to the rest of Western Australia<br />

will be made available. This will provide potential participants<br />

with some certainty as to when they may be able to access<br />

supports provided by the NDIS.<br />

Regardless of the ultimate model of the scheme that is<br />

chosen, the NDIS will allow eligible people to access timely<br />

supports previously unavailable to them.<br />

Since my last update, I have spoken with some of our Members<br />

living in the trial sites and asked them to share their thoughts.<br />

NDIS Hills Trial Site contact details:<br />

For people living in the local government areas of<br />

Swan, Kalamunda and Mundaring:<br />

NDIS: ndis.gov.au<br />

Telephone: 1800 800 110<br />

NDIS Access checklist: ndis.gov.au/<br />

ndis-access-checklist<br />

Joanna, from Middle Swan said, “Receiving NDIS supports is<br />

helping me live a fulfilling life. My goal was to be able to keep<br />

working and continue my daily living activities. Gaining supports<br />

from the NDIS was an easy process. I didn’t think I would be<br />

eligible because I was still working and was surprised to find out<br />

that the NDIS is not income tested and I could receive help.” This<br />

is a common misconception amongst the Members I spoke to,<br />

and the reason some have not yet tried to access the Scheme.<br />

One of the key principles of the NDIS is to provide access to<br />

supports earlier rather than later, helping people to maintain<br />

their employment and continue to contribute economically.<br />

Natasha from Beeliar told me that the process hasn’t been<br />

without issue but thought that the idea of the Scheme was<br />

right and that in time, hoped that the system would benefit a<br />

larger number of people living with a disability.<br />

Many participants with NDIS plans have echoed Natasha’s<br />

thoughts. The planning process can be lengthy and confusing<br />

for some. Please remember that the <strong>MSWA</strong> staff are here<br />

to help our Members better understand the Scheme and<br />

to help with the planning process.<br />

During the trial in Western Australia much has been<br />

learned about the best ways to support people living with a<br />

permanent and significant disability and the NDIS processes<br />

have improved.<br />

The number of people accessing the NDIS is steadily<br />

increasing as people become more familiar with the extensive<br />

types of funded supports offered.<br />

I hope that in my next update, I will have the pleasure<br />

of advising you how the NDIS will be rolled out across<br />

the whole of WA and when you may be able to apply to<br />

access these supports.<br />

If you would like further information, please contact <strong>MSWA</strong> NDIS Operations Manager –<br />

Mark Douglas on 9365 4824 or email ndisenquiries@mswa.org.au<br />

NDIS – My Way contact details:<br />

For people living in the South West Region<br />

& Cities of Cockburn & Kwinana:<br />

NDIS – My Way: disability.wa.gov.au/<br />

wa-ndis-my-way/wa-ndis-my-way/<br />

Telephone: 1800 996 214<br />

Eligibility Check: dsc.wa.gov.au/Am_I_Eligible/<br />

<strong>MSWA</strong> has committed almost one million dollars to fund five<br />

local researchers for the next two years, in a bid to help find<br />

the cause, better treatments and a cure for MS.<br />

Our CEO Marcus Stafford said, “We are acutely aware of<br />

how hard it is for researchers to secure funding these days.<br />

Initially, we had planned to fund the researchers for one year<br />

but when we saw the quality of the work they are doing, we<br />

decided to commit to funding them for two years.”<br />

<strong>MSWA</strong> has a long history of providing significant financial<br />

contributions to Australian MS research efforts into finding<br />

the cause, better treatments and a cure for MS.<br />

This year we once again led the way with an additional one<br />

million dollars towards a national research focus.<br />

We are now proud to announce the successful candidates<br />

which includes three post doctorate research fellowships and<br />

two social and applied research applicants.<br />

Here we highlight two of the researchers and learn more<br />

about their projects.<br />

Dr Marzena Pedrini – Senior Research Officer, Western<br />

Australian Neuroscience Research Institute (WANRI)<br />

Well published in the multiple sclerosis and associated<br />

research fields, Dr Pedrini supports several current and<br />

proposed projects including “Exploring the mechanisms of<br />

MS pathogenies”, HSCT (stem cell) register, Ultraviolet B<br />

(UVB) therapy in MS and Epstein-Barr virus (EBV) research.<br />

She told us, “Our research aims to provide better understanding<br />

of the MS progression, from the first episode of demyelination<br />

to the conversion to MS and then to the benign or aggressive<br />

course. Knowing the predictors, biomarkers of specific course<br />

will help to tailor the best therapy.<br />

“This project will utilise radiological as well as clinical data<br />

to predict specific disease sub-types. In this way, we hope to<br />

build a detailed profile of MS that can be utilised in disease<br />

diagnosis and monitoring.”<br />

Dr Michelle Byrne – Head of Clinical Psychology Unit,<br />

Centre for Neuromuscular & Neurological Disorders at<br />

the University of Western Australia<br />

Dr Byrne’s research focuses on neuroplasticity and rewiring<br />

the brain. Her project will evaluate the effects of an integrated<br />

cognitive and psychosocial rehabilitation program to facilitate<br />

improvements in cognitive and psychosocial development.<br />

“People with MS have lesions on the brain which have killed<br />

the cells. But through cognitive retraining programs there are<br />

other areas of the brain that can be recruited to become active<br />

and carry out the functions of the brain that are snoozing,”<br />

Dr Byrne said.<br />

“There’s a very strong interplay between someone’s physical,<br />

emotional and cognitive wellbeing. So if we can help someone<br />

improve their memory, information processing or problem<br />

solving, it will improve their quality of life.”<br />

The other researchers include:<br />

• Mr Anderson Jones from the Telethon Kids Institute<br />

focusing on extending the Phototherapy for Clinically Isolated<br />

Syndrome (PhoCIS) project looking at the mechanisms<br />

by which UV affects the immune system and contributes<br />

towards finding a way to stop the progression of MS;<br />

• Dr Lucinda Black from Curtin University focusing on<br />

exploring the link between dietary factors and the risk<br />

of MS; and<br />

• Professor Soumya Ghosh from WANRI and Sir<br />

Charles Gairdner Hospital investigating whether the<br />

use of non-invasive brain stimulation plus balance<br />

treatment enhances neuroplasticity for people with<br />

relapsing-remitting MS.<br />

Keep a look out for the next <strong>Bulletin</strong> where we<br />

will take a closer look at the remaining research<br />

projects and update you on the progress of the research<br />

being undertaken.<br />

12 <strong>Autumn</strong> 20<strong>16</strong> The MS Society of Western Australia The MS Society of Western Australia <strong>Autumn</strong> 20<strong>16</strong> 13

<strong>MSWA</strong> heads to<br />

Shenton Park<br />

There’s an<br />

app for that!<br />

<strong>MSWA</strong> is one step closer to building a new high support<br />

accommodation facility in Shenton Park for people with MS<br />

and other neurological conditions after the State Government<br />

announced in January plans to lease land to the Society.<br />

The Society has set aside $2 million for the build, and plans<br />

to commence work on the facility as soon as the agreement<br />

is finalised. The Shenton Park facility will offer high support<br />

accommodation to people with MS and other neurological<br />

conditions in WA, with lodgings to include a private bedroom,<br />

lounge, kitchen and bathroom and provide around the<br />

clock care.<br />

As well as <strong>MSWA</strong>’s high support accommodation facility,<br />

the old Shenton Park hospital site will also be a new home<br />

for the Leukaemia Foundation and an urban village for up to<br />

1,600 homes.<br />

You could be our very<br />

first multi-millionaire!<br />

The first MS Mega Home Lottery of 20<strong>16</strong> launched in<br />

February and the stakes are higher than ever. For the<br />

first time, the winner will be walking away an instant<br />

multi-millionaire!<br />

The Grand Prize is the biggest in the Lottery’s history at<br />

$2.1 million. This comprises a stunning $1.6 million how<br />

home located in the beach side suburb of Harbour Rise,<br />

Hillarys, built and furnished by Webb & Brown-Neaves,<br />

plus $500,000 in cash.<br />

In even more good news, the chances of winning a prize<br />

have significantly improved from last year’s 1 in 25 to an<br />

amazing 1 in 15. With a massive $5 million prize pool of<br />

8,338 prizes including prestige vehicles, overseas holidays<br />

and home electronics, the odds have never been better.<br />

Not forgetting, the $500,000 Early Bird Cash Prize, and four<br />

$50,000 Bonus Cash Prizes are also up for grabs! The four<br />

Bonus Cash Prizes will be drawn on Wednesday, 30 March.<br />

The winning tickets will be re-entered and eligible to win<br />

any of the remaining prizes, including the Grand Prize.<br />

The draw for all remaining prizes, including the Early Bird<br />

and Grand Prizes, will take place on Wednesday, 27 April,<br />

with winners to be published online at mslottery.com.au.<br />

It is hoped that the new Shenton Park facility will emulate the<br />

success of the Treendale high support accommodation facility<br />

near Bunbury where Members in residence have become part<br />

of the community.<br />

Shenton Park’s location makes it very convenient for transport<br />

links and means that family and friends will be able to<br />

visit easily.<br />

The build of the facility has been made possible thanks<br />

to the public’s continued donations and support as well<br />

as funds raised from the Mega Home Lottery.<br />

As in previous years, the lottery’s popularity is evident in<br />

the tickets having sold out in record time. Thank you to the<br />

supporters of the MS Mega Home Lottery for supporting<br />

<strong>MSWA</strong>’s work in providing support and services to the<br />

thousands of Western Australians living with MS and other<br />

neurological conditions.<br />

Keep an eye on mslottery.com.au as well as on<br />

facebook.com/MSMegaHomeLottery to see if you are<br />

one of the lucky winners!<br />

In the last edition of <strong>Bulletin</strong>, we shared with you five free<br />

apps designed to improve your life in one way or another. In<br />

our second instalment of this series, we bring you five free<br />

MS-specific apps from journals to record your symptoms and<br />

relapses to reminders you can share with family members.<br />

Whether you’re living with MS or involved in the care of<br />

someone with MS, these apps might help you better manage<br />

life with MS.<br />

1. SymTrac – SymTrac is an MS symptom tracking tool<br />

created by Novartis Pharmaceuticals. Record and rate<br />

your daily symptoms, chart your progress, and share your<br />

information with your healthcare team. The app allows<br />

you to add custom symptoms which means that no matter<br />

how unusual, you can still document and track them within<br />

the app. It also includes a series of exercises designed for<br />

people with MS.<br />

Compatibility: iPhone, Android<br />

2. RxmindMe Presciption – RxmindMe Prescription is a<br />

medication reminder app designed to help you keep track<br />

of your medications. You can set up medication reminder<br />

notifications, dosage information, and record when you’ve<br />

taken your medications.<br />

Compatibility: iPhone<br />

3. MS Self – Among other things, MS Self allows users to<br />

track symptoms, mobility, energy levels, and mood. Your<br />

journal entries are searchable and can help provide insight<br />

into finding patterns in behaviour and symptoms. The app<br />

also syncs to Fitbit to monitor your exercise and activity<br />

levels with more accuracy.<br />

Compatibility: iPhone, Fitbit<br />

4. Multiple Sclerosis Diagnosis & Management – This<br />

app has been designed as a tool for neurologists and<br />

other healthcare providers to help in the diagnosis and<br />

management of MS. The comprehensive app contains<br />

everything from a list of MS signs and symptoms to a two<br />

question screening tool for depression which can affect<br />

those who have been diagnosed.<br />

Compatibility: iPhone, Android<br />

5. MSAA – Multiple Sclerosis Self-Care Manager –<br />

This app has been specifically designed by the Multiple<br />

Sclerosis Association of America (MSAA) for people living<br />

with MS. Users can track relapses and symptoms, manage<br />

medications and get the latest research news. The app<br />

also includes a journal and allows you to compile your<br />

medical records.<br />

Compatibility: iPhone, Android<br />



Decorate your bike in your most outrageous lights and join us for a 40 or 70km ride on Friday night, 8 April 20<strong>16</strong>.<br />

Money raised will help us support the thousands of people in Western Australia living with MS and other neurological conditions.<br />

Register now at msfundraise.org.au/Bridges-Night-Ride-for-MS/register/<br />

14 <strong>Autumn</strong> 20<strong>16</strong> The MS Society of Western Australia The MS Society of Western Australia <strong>Autumn</strong> 20<strong>16</strong> 15

Tips for successful<br />

communication<br />

Leonie Wellington<br />

Shaping your<br />

own destiny<br />

Dr Andrew Ong<br />

A conversation is an opportunity for everyone involved to feel<br />

able to contribute their information into the main pool. Having<br />

all the information reduces the use of assumptions or jumping<br />

to conclusions.<br />

Active listening is a great way to check out the meaning<br />

behind what others are saying. Reflecting what you are<br />

hearing by paraphrasing, asking clarifying questions and<br />

summarising are all skills that help reduce misunderstanding<br />

and defensiveness.<br />

When sharing your own information, using “I” statements and<br />

avoiding exaggerations, generalisations and absolutes helps<br />

others to hear what you mean and minimises the possibility<br />

of others becoming defensive or clamming up.<br />

Here are some more ideas to make communication safe<br />

and open:<br />

• A conversation is not a debate; it is a search for mutual<br />

respect and understanding.<br />

• Choose the timing of a conversation for when you are calm<br />

and prepared.<br />

• Make a time and place to have important conversations and<br />

invite others.<br />

• Write a script or list of main points to keep you on track.<br />

• Ensure that there are minimal distractions.<br />

• Keep to the facts as you know them, don’t jump to<br />

conclusions or make assumptions.<br />

• Express your concerns in “I” statements; “I feel that”, “I am<br />

starting to wonder”, “I wanted to check out with you”.<br />

• Take responsibility for your part in the situation and share it.<br />

• Avoid generalisations and exaggerations such as “you<br />

never”, “you always”, “everybody knows”, “it is always”.<br />

• Invite others to tell their story.<br />

• Treat others as you wish to be treated.<br />

• Be prepared that not everyone will agree with you or share<br />

your beliefs and values.<br />

• Use active listening to check you are understanding what<br />

others are saying.<br />

• Be open to compromises or different solutions.<br />

• Practise new skills on easier topics to gain confidence for<br />

tougher conversations.<br />

“We see a universe marvellously arranged, obeying certain<br />

laws, but we understand the laws only dimly. Our limited<br />

minds cannot grasp the mysterious force that sways the<br />

constellations.” Albert Einstein, 1930.<br />

The most powerful way to shape our lives is to first make the<br />

decision to take action. The results that people produce from<br />

this mind-shaping exercise rest on that decision. Each of us<br />

will make different decisions and our different actions as a<br />

result of this will take us in a definite direction, leading us to<br />

an ultimate destination — our particular destiny.<br />

Making this positive decision in the first place means that<br />

we are no longer the creature of circumstances, instead we<br />

have made circumstances the creatures of men and women.<br />

So if we want to direct our lives we must take control of our<br />

actions, and then follow through by being consistent about it.<br />

What then precedes all our actions? What determines what<br />

we do and what we will become? What is it that gives birth<br />

to all actions? The answer to each of these questions is the<br />

decisions we make. You begin to shape your destiny the<br />

moment you make that decision.<br />

A different decision will radically change your life for better or<br />

for worse. It is your decision however, not the condition of your<br />

life that will determine your destiny. Your destiny is therefore in<br />

your hands and shaped by the decisions you make.<br />

The history books are full of people like Einstein, Gandhi, and<br />

the deafblind Helen Keller who, against all odds, have broken<br />

through impossible barriers to move on and beyond the<br />

limitations of their circumstances by making new decisions<br />

about what to do with their lives. They become our shining<br />

examples of the unlimited power of the human spirit.<br />

“The best and most beautiful things in the world cannot be<br />

seen or even touched – they must be felt with the heart.”<br />

Helen Keller<br />

SUNDAY, 1 MAY 20<strong>16</strong><br />

Zika Virus Alert<br />

A global health alert has been released by the World<br />

Health Organization (WHO) regarding Zika virus. As stated<br />

by Dr Margaret Chan, WHO Director General, “Zika virus<br />

is a serious global health concern with highly likely<br />

global spread”.<br />

Zika virus is a mosquito borne disease which is known<br />

to circulate in Africa, the Americas and the Pacific. Most<br />

patients who present with Zika virus are asymptomatic but<br />

in some cases it can cause fever, rash, severe headache as<br />

well as joint and muscle pain.<br />

There is particular concern regarding the effects of the<br />

virus on pregnant women and their foetuses. Women who<br />

are pregnant should reconsider travel to areas with current<br />

outbreaks of Zika and it is important for pregnant women<br />

to consult their health professional to discuss the risk of<br />

transmission and infection.<br />

There is no vaccine or specific treatment for Zika, which<br />

emphasises the importance of undertaking preventative<br />

measures. For those who are living in or travelling to endemic<br />

areas, prevention relies on avoiding mosquito bites.<br />

For further information, please follow the links below:<br />

smartraveller.gov.au/bulletins/zika_virus<br />

cdc.gov/zika/pregnancy/index.html<br />

who.int/mediacentre/factsheets/zika/en/<br />

health.gov.au/internet/main/publishing.nsf/Content/<br />

ohp-zika.htm<br />

Join this unique event and feel the reward and exhilaration of climbing 53 flights<br />

or 1,103 stairs to the top of Perth’s tallest building Central Park, whilst knowing<br />

you have helped make a difference to the thousands of Western Australians living<br />

with multiple sclerosis (MS) and other neurological conditions.<br />


<strong>16</strong> <strong>Autumn</strong> 20<strong>16</strong> The MS Society of Western Australia The MS Society of Western Australia <strong>Autumn</strong> 20<strong>16</strong> 17

Shemar Moore<br />

Outside<br />

Ros Harman<br />

American actor Shemar Moore is not only holding our<br />

attention as Derek Morgan in TV show Criminal Minds, he is<br />

also playing a role as loyal ambassador for the National MS<br />

Society in the USA.<br />

As an only child, whose parents split up when he was two,<br />

Shemar has always been very close to his mother Marilyn.<br />

“She made whatever sacrifices and took whatever job<br />

opportunities she could with the hopes that she could give<br />

me the best future I could have,” he says admiringly.<br />

The onset of his mother’s illness only strengthened that bond.<br />

He added, “It didn’t take MS for us to get close. We got closer.”<br />

Like many people, Marilyn experienced symptoms long before<br />

she was diagnosed. Her arm itched, her feet became numb,<br />

she experienced chills in her hands, her coordination was off,<br />

and she was overheating frequently.<br />

“There was always an explanation for the symptoms until my<br />

foot started to drag,” Marilyn says.<br />

Shemar, too, was in denial at first, “I was like, ‘Oh, Mum, just<br />

get a massage or go to a chiropractor.’”<br />

When doctors ran a series of tests on her, Shemar said, “…<br />

the last thing we expected was for her to get diagnosed with<br />

multiple sclerosis, because she was very athletic.”<br />

It took a few years for the realisation to set in that “my mum<br />

couldn’t fix it and that I couldn’t fix it. Like most kids, I always<br />

felt my mum was invincible. But here was a chink in her<br />

armour. She had kind of met her kryptonite.”<br />

When asked why he is taking part in Kiss Goodbye to MS,<br />

Shemar says, “I want my mum to beat this damn thing. She’s<br />

my Superwoman and she needs to know that someone is out<br />

there fighting for her at all times.”<br />

“Go outside and play for goodness sake!” my mother said,<br />

fed up with our constant bickering. And for goodness sake,<br />

we did.<br />

Outside, we climbed through the barbed wire fence and nimbly<br />

avoided cowpats as we ran barefoot across the paddock to the<br />

patch of bush left uncleared down by the creek. An ancient<br />

red gum split in half by lightning long ago in someone’s<br />

dreamtime became in turns our cubby-house, our castle, our<br />

lookout and our haven. Our toes gripped its blackened bark<br />

as we climbed up into its branches, stretching for handholds.<br />

A kookaburra laughed as we arranged branches into a bridge<br />

across the trickle of brownish water that was the creek. We<br />

watched glutinous frogs’ eggs turn into tadpoles which we<br />

took home in a jar. We fossicked around in the scrub and<br />

picked a conciliatory bouquet of raggedy wildflowers to offer<br />

to our mother.<br />

When I was a child, outside was a vast, ever changing,<br />

wondrously fascinating playground. It was my leisure centre,<br />

my fitness centre, my entertainment centre, my school and<br />

my place of worship. Outside I was in raw, visceral contact<br />

with nature and through this contact I learnt about the<br />

world and about myself. I grew strong and supple as I ran<br />

across the sandy earth and played in the blue-green bush.<br />

My vision developed as I studied a tiny beetle crawling on<br />

a leaf, and then looked far into the distance where the sky<br />

went on forever. I felt the numbing cold of the rain on my<br />

skin in winter and the fierce sting of the sun in summer. I<br />

learnt what it is to worship as I listened to a choir of ecstatic<br />

birds celebrating the sunrise on a dew-festooned morning. I<br />

understood what infinity means as I looked up and watched<br />

the stars embracing the night sky.<br />

These days I live most of my time inside. I sit in air-conditioned<br />

comfort in my cool, open-plan, suburban dwelling. My<br />

wheelchair glides smoothly over my shiny, even floorboards.<br />

I look out into my brick-paved courtyard at a garden bed<br />

planted with symmetrically placed, even-sized shrubs. If I turn<br />

the radio off and listen carefully, I can sometimes hear birds<br />

chirping in the street trees.<br />

Shemar has been a participant in Bike MS, a fundraising event<br />

organised by the National MS Society in the US, for ten years.<br />

“She did so much for me, it would be wrong for me not to give<br />

back and fight for her. It’s almost like in this stage of life we<br />

have traded positions; I’m doing whatever I have to do for her,<br />

and to give her a chance to enjoy her life. MS is real, but we<br />

are not going to let it beat us.”<br />

I venture outside occasionally and trundle in my electric<br />

wheelchair along the footpath to the nearby shops. Along the<br />

way I examine my neighbours’ neatly planted front gardens.<br />

Sometimes a dog barks as I go past, or a cat slinks under a<br />

bush. One day last spring I heard a cacophony of squawking<br />

coming from a tree ahead of me. As I approached I saw two<br />

large black birds sitting in the branches, their tails fanned out<br />

beneath them displaying a band of bright red. They observed<br />

me warily as I got near, but quickly decided I was not of much<br />

interest and continued pecking at seeds. I found out later they<br />

are called Red-tailed Black Cockatoos, and are a vulnerable<br />

species, running out of the trees they like because we keep<br />

chopping them down.<br />

I was so excited to see these rare visitors to our suburb that I<br />

stayed for some time watching them, until I noticed someone<br />

peering through their curtains in the house opposite me<br />

and thought I should move on in case I was mistaken for a<br />

cat burglar.<br />

I go past that tree several times a week, but I’ve never seen<br />

the Red-tailed Black Cockatoos again. Our neighbourhood<br />

is mostly brick and concrete, so I suppose they’ve gone<br />

somewhere with more trees. I hope they found some.<br />

I hope at least that they are still outside. For goodness sake.<br />

18 <strong>Autumn</strong> 20<strong>16</strong> The MS Society of Western Australia<br />

The MS Society of Western Australia <strong>Autumn</strong> 20<strong>16</strong> 19

That’s life<br />

with Narelle<br />

Narelle Taylor<br />

Volunteering with Dawn<br />

Dawn Burke, Volunteer Coordinator<br />

Summer is usually such a purgatory of discomfort but this year<br />

there was so much happening for me living in air-conditioned<br />

comfort that I didn’t even notice the rise in temperature.<br />

I’m sure that somebody, somewhere, may well have been<br />

sweltering but I was swanning about like Cleopatra having my<br />

every tiny whim anticipated and taken care of. I went to my<br />

daughter Chelsea’s home in Broken Hill for Christmas.<br />

The grandchildren were delightful, as grandchildren invariably<br />

are. Santa Claus chose gifts that were very well received and<br />

this lovely grandmother was pleased to meet friends of the<br />

parents, friends of the children and friends of all the family. It<br />

was heartening to know that those positions had been filled<br />

by individuals that I approved of and liked too.<br />

My sister Janine had also come from Sydney, which was great<br />

for me, and she was hospitably accommodated and included<br />

in everything by my daughter and her family.<br />

I was given an extensive visitor’s tour of every point of interest<br />

in town and even out in the bush to the first site of this, that,<br />

and the other, including an out of town trip to a vantage point<br />

from where we viewed the sunset.<br />

At times, the car was fully loaded with myself, Janine, Chelsea<br />

and Rob, Milla and Max and the new baby Alby, as well as his<br />

stroller and my wheelchair. Something had to stay at home.<br />

Alby is four months old and not even expected to walk, so the<br />

stroller stayed in the car. I suggested, in a somewhat cavalier<br />

fashion, that the wheelchair stay at the house. It wasn’t<br />

because I felt a miracle coming on but I figured I could see<br />

the impending phenomena through the windscreen, without<br />

wheels on my seat.<br />

They figured that Alby could be carried, like a papoose if<br />

necessary, and goodness, I haven’t put on that much weight.<br />

Believe it or not, the sun went down! (It was really the horizon<br />

rising, rather than the sun lowering, but I couldn’t imagine<br />

anyone in our party being blown away by that information.)<br />

We all agreed that it was beautiful to see and that the glass<br />

of wine we’d each had (children not included), was “ever so,<br />

ever so” and did raise the tone of the event.<br />

Chelsea had phoned the MS Society in WA and was directed<br />

to care providers and advised regarding what I might need to<br />

make my stay comfortable. Bathing in milk and eating only<br />

peeled grapes were not catered for but apart from doing<br />

without those, I endured no trauma being away from home.<br />

My father turns ninety in March in Sydney and I plan to<br />

be there.<br />

My daughters from Perth will accompany me and our group<br />

will present together to acclaim the old bloke for managing to<br />

still be there at the party and yet in no way spoil the fun.<br />

At the aged care facility where I’m living, I wonder if my<br />

Dad could ever fit in here. I think not. He still goes to the<br />

beach each morning, summer and winter, and follows my<br />

physiotherapy doings as if they, one day, will activate the<br />

world’s first cure of MS.<br />

I think the sun comes up a little bit later every day<br />

here and I wonder if one day I’ll not notice, or perhaps<br />

not care.<br />


Our next event volunteering opportunities are:<br />

Bridges Night Ride for MS - Friday, 8 April 20<strong>16</strong><br />

Step Up for MS - Sunday, 1 May 20<strong>16</strong><br />

Rotary Team Challenge - Saturday, 7 May 20<strong>16</strong><br />

World MS Day - Wednesday, 25 May 20<strong>16</strong><br />

Register your interest and help us support those living with MS in Western Australia, call (08) 6454 3131 or email events@mswa.org.au<br />

I’m sending you all a big hello, and welcoming you back to the<br />

Society for 20<strong>16</strong>. I hope you all had a wonderful break and are<br />

rested up ready to embrace another fun-filled year.<br />

The year has started off well and I don’t know about all of you,<br />

but life seems to get busier and busier and I have literally hit<br />

the ground running. I’m glad to see so many of our volunteers<br />

returning again. It shows we are doing something right to have<br />

such dedicated and reliable volunteers who keep coming back.<br />

I would also like to welcome all new <strong>MSWA</strong> volunteers and<br />

wish you well on your volunteer journey, whether it be for a<br />

short or a long time. Any time given, no matter how long it is,<br />

always helps and makes a difference for both Members and<br />

staff. We have a few existing vacancies to fill and a couple of<br />

new positions as well, which means there will be quite a few<br />

new faces floating around at various centres.<br />

I can now share the lowdown on the International Volunteers<br />

Day (IVD) which I briefly mentioned in the last <strong>Bulletin</strong>. IVD is<br />

celebrated on 5 December with one of the key events being<br />

a Garden Party at Government House. Last year’s event was<br />

enjoyed by nine <strong>MSWA</strong> volunteers and Nicola Ryan, Senior<br />

Outreach Coordinator, who attended in my place.<br />

The volunteers were lucky enough to meet the Governor of<br />

WA, Kerry Sanderson. Nicola informs me an enjoyable time<br />

was had by all. I believe one volunteer got up to a little bit of<br />

mischief which kept everyone entertained. I won’t mention<br />

any names, but you know who you are!<br />

The ninth of December saw our always popular end of year<br />

Christmas Party celebration for the Members, volunteers and<br />

staff, held again in the function room of the Christian Life Centre<br />

in Como. What a fantastic time we all had. Overall the whole<br />

event ran smoothly, with only some little hiccups along the way,<br />

but hey, who hasn’t experienced hiccups here and there.<br />

Staff and volunteers set up the function room beautifully,<br />

carrying the chosen colour theme of red and silver. We had<br />

beautiful table runners with adorable little snowmen, that our<br />

Wilson craft volunteers and Members made, and poinsettias<br />

as centrepieces.<br />

The entertainment was spectacular as always, especially<br />

the Hollywood meets Bollywood performance – I was in that<br />

one! Jokes aside, all acts were amazing, funny and enjoyed<br />

by all. Staff really go out of their way putting acts together<br />

to entertain everyone. Who knows, maybe we could do a<br />

volunteer act this Christmas? What do you think? You can<br />

count me in.<br />

All of those who know me by now, know I love to dress up<br />

and I was in my element in all my red splendour prancing and<br />

dancing around blowing bubbles. I love these types of events<br />

and what I enjoy the most is knowing that more and more<br />

volunteers and Members come along each year and we are<br />

hopefully making a difference to their day.<br />

Lunch, as always, was amazing and Julie’s Kitchen does such<br />

a wonderful job catering for our large numbers, and they do it<br />

well. Santa dropped in for a quick visit to deliver gifts for all.<br />

Poor ol’ Santa must have been tired after meeting everyone<br />

whilst dealing with the heat. I would personally like to thank<br />

Santa, as he is also registered as a volunteer with the Society.<br />

No rest for the wicked I’m afraid.<br />

As you are all aware, it takes a lot of work to organise an<br />

event such as this, and there are many people behind the<br />

wheel driving it to success. I would like to thank all of the<br />

planning committee, Nicola Ryan and her Wilson Outreach<br />

team and any other staff who volunteered and helped out on<br />

the day.<br />

The day wouldn’t run quite as well without the much<br />

appreciated assistance from the QBE volunteers. QBE have<br />

been volunteering at this event for quite a few years now and<br />

make the whole day run more smoothly. QBE help to set up,<br />

clean up and look after everyone by serving the drinks and<br />

food. Without their help, staff would have to get there extra<br />

early and stay late, so for this we are truly grateful.<br />

Christmas seems like such a long time ago now. I have a<br />

sister-in-law who loves Christmas and is already counting<br />

down the days until it’s here again, can you believe it? Let’s<br />

get Easter over with first. On that note, I trust you all had a<br />

lovely Easter break and enjoyed the warm weather a March<br />

Easter brings with it.<br />

In some sadder news, one of our long time and founding<br />

Members who served a term on the Board, Reemour Evans,<br />

who was also a long-term volunteer, sadly passed away 30<br />

January. Reemour will be sorely missed and we send our<br />

condolences to her family, as our thoughts are with them and<br />

with Reemour in her new spiritual journey.<br />

That’s all I have for now. I look forward to catching up with<br />

you. Please know my door is always open and if you have any<br />

questions, or would like to source other opportunities, do not<br />

hesitate to come and have a chat. I’m only a phone call away.<br />

Take care, and until next time, Dawn.<br />

20 <strong>Autumn</strong> 20<strong>16</strong> The MS Society of Western Australia The MS Society of Western Australia <strong>Autumn</strong> 20<strong>16</strong> 21

Anytime Fitness<br />

Stadium Stair Race<br />

Walking in memory –<br />

Rotary Team Challenge 20<strong>16</strong><br />

Second highest fundrasing team,<br />

Nelly’s Angels.<br />

Melissa (R) with her friend Sharon.<br />

Fitness fanatics, families and fervent fundraisers flocked to<br />

the Domain Stadium on Saturday, 20 February 20<strong>16</strong> for the<br />

Anytime Fitness Stadium Stair Race.<br />

Now in its second year, this unique and exciting event allowed<br />

participants to access all areas of Perth’s home of football,<br />

stepping up, down and through the iconic venue.<br />

This year’s event was bigger and better in every way. Participant<br />

numbers were up with a fantastic 589 steppers registering to<br />

take on the challenge of 6,000 steps in the full climb, 3,000<br />

steps in the half climb or 1,200 steps in the mini climb.<br />

Last year’s fundraising total was $42,785, a figure that, along<br />

with this year’s goal of $50,000, was surpassed with an<br />

impressive $60,110 raised.<br />

Our top fundraising team last year was Shanae’s Shufflers<br />

who raised $5,236. The team was back this year and have<br />

once again taken out the title of highest fundraisers, beating<br />

their own goal of $10,000 with an amazing $12,779! Well<br />

done to the team on this incredible effort.<br />

Team captain Russell said, “My wife Shanae was diagnosed<br />

with MS just over 10 years ago when she was 19. The team is<br />

made up of family and friends who really want to help people<br />

living with MS. We see what Shanae goes through day in and<br />

day out and we want to do anything we can to help make the<br />

lives of people living with MS easier.”<br />

Swimming for MS<br />

The Swim for MS events have become a staple on the<br />

<strong>MSWA</strong> fundraising event calendar, with over $200,000<br />

raised in the past five years for Western Australians living<br />

with MS and other neurological conditions.<br />

Swim for MS Albany is the longest running of the Swim<br />

events, beginning in 2012. It continues to be the most<br />

popular Swim for MS with 103 swimmers participating<br />

when the event was recently held on 27 February, and a<br />

fantastic $30,320 raised in the name of the ten-hour event.<br />

Last year the top fundraising team was The Marines,<br />

led by Marina Pietropaolo who is a <strong>MSWA</strong> Member. This<br />

year Marina and her team were at it again, topping the<br />

leaderboard with $10,677 raised.<br />

The second highest fundraising team was Nelly’s Angels,<br />

who had travelled from Kalbarri, Margaret River and Augusta<br />

to participate in the event in support of Narelle De Grauw<br />

who has MS. Narelle’s son, nieces and nephews took on the<br />

challenge and raised over $5,000. A great family effort!<br />

Our own <strong>MSWA</strong> President, George Pampacos once again<br />

participated in the event in the full climb category. Last time<br />

he completed the course in 60 minutes and this year saw him<br />

with a personal best of 48 minutes. Congratulations George!<br />

It was a real family event for George this year with his cousin<br />

Christina Miller our highest individual fundraiser, having<br />

raised $3,660.<br />

<strong>MSWA</strong> Ambassador Josh Kennedy was in attendance to<br />

cheer the participants on and was our official race starter. He<br />

also had some fun with the kids, kicking the footy and having<br />

his photo taken with his many fans.<br />

Congratulations to all involved with this successful event!<br />

Keep an eye on facebook.com/MSWesternAustralia and<br />

stadiumstairrace.com.au for details on next year’s event.<br />

Highest fundraising team –<br />

The Marines.<br />

Earlier this year a new location, Armadale, enjoyed its<br />

inaugural Swim for MS on Saturday, 6 February. There<br />

were 51 participants who swam in the four-hour event and<br />

they collectively raised $2,495 for <strong>MSWA</strong>.<br />

Bunbury took on the swimming challenge next with the<br />

Swim for MS Bunbury held on Sunday, 20 March 20<strong>16</strong>. This<br />

year the Bunbury swim was a four-hour event. Over the<br />

past three years, the Bunbury swim has raised $118,515<br />

and had 288 participants making a splash in the pool. Stay<br />

tuned to the next <strong>Bulletin</strong> to find out how participants did<br />

in this year’s event!<br />

For more information on any of the Swim for MS events,<br />

go to swimforms.org.au<br />

Melissa Lang’s mother Carole was diagnosed with MS over<br />

30 years ago. A long-time Member of the MS Society, sadly<br />

Carole passed away in 2013 due to MS complications. Melissa<br />

wanted to find a way to honour her mum’s memory and got<br />

in touch with the MS Society. She participated in the Rotary<br />

Team Challenge in 2015 and has signed up once again to walk<br />

in memory of her mother. We spoke to Melissa to find out more<br />

about her motivation to participate.<br />

Why are you participating in the Rotary Team Challenge?<br />

I first learnt about Rotary Team Challenge in 2014 and got<br />

in touch with the MS Society to inquire further. I told them<br />

about my mother, Carole, and was humbled and touched when<br />

<strong>MSWA</strong> employees offered to walk in honour of my mum. As<br />

<strong>MSWA</strong> had been an amazing support to my parents for over<br />

three decades, I felt participating in the Rotary Team Challenge<br />

and raising funds for <strong>MSWA</strong> was one positive way I could give<br />

back to them. So I took the plunge and signed up last year!<br />

What did you think of the event?<br />

My best friend Sharon and I participated in the 2015 Rotary<br />

Team Challenge and absolutely loved it! There were so many<br />

positives; it got us outdoors, we chatted for nearly 4 hours<br />

uninterrupted, the location was divine, temperature perfect, a<br />

fun way to exercise, we engaged the community for donations<br />

and to top it off, we shared so many laughs. It was a fantastic<br />

experience and one we really enjoyed.<br />

Do you have any fundraising plans this year?<br />

Last year, we raised over $1,000 through our friends by posting<br />

on Facebook explaining to them what we were doing and why.<br />

A night under the stars<br />

It was a perfect summer’s night out at the Lilac Hill Cocktail Gala on Saturday,<br />

6 February at Lilac Hill Park, Caversham. Hosted by Brittany Mucciarone, the<br />

event kicked off with an acoustic set by singer Zoe Tsagalis. Three hundred<br />

guests enjoyed drinks and canapes by the Swan River. The event also had a dash<br />

of star power with West Coast Eagles footballer Nic Naitanui attending. Guests<br />

bid in a live auction with the best item, a Black Caviar signed jersey, going for<br />

$2,000. DJ John Karoll took over for the rest of the night and guests danced the<br />

night away. The event raised over $22,000, which adds to the $4,000 Brittany<br />

raised through a 12-hour soccer event held in October. Brittany’s mother<br />

was diagnosed with MS four years ago and Brittany has been fundraising<br />

for the MS Society for two years through her organisation – Face Up to MS.<br />

For more information on her events, head to facebook.com/faceuptoms<br />

This year, I have emailed and posted requests for fundraising<br />

support to local members of Parliament, the Shire, businesses<br />

and the Lions Club.<br />

I am also fundraising via gardenexpress.com.au by promoting<br />

buying flower bulbs as a gorgeous Mother’s Day gift idea.<br />

It’s a win-win as people often like to get something back<br />

when spending money. In outlaying money for bulbs, they are<br />

assisting fundraising for a great cause and buying something<br />

for their garden or selecting a personal gift for Mother’s Day.<br />

My main fundraising avenue however is still via friends on<br />

Facebook but family and colleagues are also on our hit list.<br />

What would you say to encourage other <strong>MSWA</strong> members,<br />

family and friends to join in?<br />

Make this a priority and commit to the challenge. See it as<br />

some much deserved me time or your good deed for the day.<br />

Think of it as going on a rather long walk, a time to catch up<br />

with a mate and raise some much needed funds at the same<br />

time. And remember when you see the tunnel, the end is nigh!<br />

Just get out there and do it!<br />

The 20<strong>16</strong> Rotary Team Challenge is being held on Saturday,<br />

7 May. Cycle, run or walk along parts of the picturesque<br />

Avon River edge, the Kep Track, the Railway Heritage<br />

Trail and John Forrest National Park to the finish line at<br />

the Swan View Railway Station. Choose your distance<br />

from 22km, 50km or 75km. A unique event and a great<br />

physical challenge, in a scenic part of Western Australia,<br />

all for a great cause raising funds for the MS Society of<br />

WA. Register now at rotaryteamchallenge.org.au/register<br />

Brittany with Nic Naitanui.<br />

22 <strong>Autumn</strong> 20<strong>16</strong> The MS Society of Western Australia The MS Society of Western Australia <strong>Autumn</strong> 20<strong>16</strong> 23

South West<br />

Regional Round Up<br />

Treendale Gardens update<br />

Paula Kennedy, Respite Coordinator<br />

As you know, in January 20<strong>16</strong>, devastating fires ravaged parts<br />

of the South West affecting many people, including a number of<br />

our Members and staff in various ways. Fortunately, Treendale<br />

Gardens – <strong>MSWA</strong>’s residential and respite facility – were in a<br />

position to offer emergency accommodation to Members and<br />

staff until it was safe for them to return to their homes. Messages<br />

were sent out to our local Individual Options team to let any<br />

affected Members know that we were ready and willing to assist.<br />

Some staff sought alternate accommodation after using<br />

Treendale as a base whilst they got themselves organised.<br />

Three Members and their families took up our offer and stayed<br />

between two to five nights in different areas of the facility. One<br />

family in the holiday unit, one family in respite and a Member in<br />

the residential area. We are pleased that none of these families<br />

lost their property in the fires and we were able to offer a safe<br />

place to stay during the ‘watch and act’ and other emergency<br />

warnings in their area. They have all since returned home.<br />

Treendale Gardens itself was on bushfire advice and plans had to<br />

be made in case we actually had to evacuate. Our staff members<br />

were very composed and kept the Members and residents<br />

reassured and fully up to date with what was happening, and<br />

what plans were in place if we needed to evacuate.<br />

We received calls and visits from several local <strong>MSWA</strong> staff<br />

that are not based at Treendale, offering their assistance and<br />

letting us know that they would have their phones near them<br />

overnight should we need help to evacuate at short notice. We<br />

even had an extra vehicle onsite, kindly loaned by Baptistcare,<br />

to ensure we had sufficient onsite transport options should<br />

we need to evacuate.<br />

Thankfully this was not required but we would like to<br />

acknowledge all the <strong>MSWA</strong> staff involved for their assistance<br />

and support both locally and over the phone in the metropolitan<br />

area. Sue Shapland, General Manager of Member Services<br />

would like to add:<br />

“I would personally like to thank all of the staff, and especially<br />

Paula, who did such a wonderful job of welcoming our<br />

temporary guests whilst also organising everything in<br />

readiness for a potential evacuation. The residents have<br />

told me they were kept well informed and were both calm<br />

and confident that they were in safe hands during this very<br />

stressful time. The staff were all very supportive and many<br />

had properties under threat or loved ones fighting the fires.<br />

What a great team effort!”<br />

The latest<br />

news from<br />

the South<br />

West<br />

Treendale’s Bunnings Garden<br />

Linda Kidd, Paula Kennedy and the Team<br />

In December 2015, some of our residents approached our<br />

local Bunnings with some of their great ideas about improving<br />

our courtyards. Bunnings then generously offered to supply<br />

and install an accessible fruit/veggie/herb garden in one<br />

courtyard and some flowering plants in another.<br />

The Bunnings Community Activities team came over and<br />

developed a plan, consulting with residents and staff about<br />

what they would like to see in the revamped areas. Plans<br />

were then drawn up and a team of staff from Bunnings were<br />

enlisted to come over and remove the old plants, put in new<br />

soil (generously donated by Australind Landscaping Supplies),<br />

and generally make the area ready for the big planting.<br />

Once all the preparation work had been done, the team came<br />

back and put in raised garden beds and tubs making it easier<br />

for residents to view and care for the plants. They all worked<br />

very hard and really improved these areas, and this has not<br />

gone unnoticed by the residents and their families.<br />

The garden has become a focal point for residents to gather<br />

and chat whilst watering or just soaking up the atmosphere.<br />

We are pleased to report that all the residents’ hard work is<br />

now paying off and we have started harvesting vegetables<br />

such as cucumbers, huge tomatoes, zucchini and mini<br />

eggplants. This produce has gone into the residents’ kitchen<br />

and been incorporated into the delightful evening meals<br />

created by our wonderful cook.<br />

The Treendale Gardens residents and staff would like to thank<br />

Bunnings and their staff for their hard work and generosity.<br />

CEO Marcus Stafford in Treedale’s Bunnings<br />

courtyard with residents.<br />

One-stop shop Centre to open in Bunbury<br />

It was a momentous day as Members and staff came together<br />

in Bunbury to celebrate the build of <strong>MSWA</strong>’s new Community<br />

and Health Services Centre. The high 30 degree heat<br />

didn’t dull the excitement as our CEO Marcus Stafford and<br />

Bunbury Mayor Gary Brennan turned the first sod on the<br />

$1.5 million Centre.<br />

Marcus said, “This is a fantastic occasion for us. We’re hoping<br />

that by this time next year, the doors will be open and that it<br />

is fully operational.<br />

“We currently have 234 Members in the region, not including<br />

their family and carers, who will all be able to access a wide<br />

range of services at the purpose built Centre.”<br />

Located on Mason Road in Davenport, the Centre will be a<br />

one-stop shop for people living with multiple sclerosis and<br />

other neurological conditions.<br />

A range of services will be on offer including occupational<br />

therapy, physiotherapy and fatigue management. The large<br />

block of land means more room for outreach sessions,<br />

counselling, peer support groups and will serve as a base for<br />

staff coordinating support for people living at home and staff<br />

orientation and training workshops.<br />

The Centre will also include state of the art equipment such as a<br />

physiotherapy gym with a tilt table, a MOTOmed limb exerciser,<br />

parallel bars, exercise bikes, gym equipment, massage rooms,<br />

disability access toilets and therapy rooms for group sessions.<br />

CEO Marcus Stafford<br />

and Bunbury Mayor<br />

Gary Brennan turn the<br />

first sod on <strong>MSWA</strong>’s new<br />

Community and Health<br />

Services Centre.<br />

Lynda Whitton was diagnosed with MS in 1996 and is<br />

President of the Bunbury Outreach Group and a National<br />

Advocate for MS Australia. Lynda said that she and other<br />

Members are looking forward to the new Centre and the<br />

services it will provide.<br />

“It will be lovely to have all of the services under one roof.<br />

Our current location is basically a modified house, so it’s<br />

not ideal for people in wheelchairs and the physio room<br />

doubles as a counselling room. And rather than having to<br />

make an appointment or have someone come to visit, in the<br />

new Centre we’ll just be able to knock on the counsellor’s<br />

door and have a five-minute chat,” said Lynda.<br />

“Another good thing will be having plenty of parking for<br />

everyone. I think some people might be currently put off<br />

coming to our current Outreach centre, especially if you’re in<br />

a wheelchair or a walker, because there isn’t enough parking.<br />

“I’d also like to thank the people of the South West who<br />

donated to the yearly Swim for MS in Bunbury. In our first<br />

year alone we raised more than $55,000 and all of the money<br />

from the Swims has gone towards helping us to relocate to<br />

this new Centre, so please keep supporting us because every<br />

little bit helps.”<br />

The build of the Centre has been made possible thanks to<br />

the public’s donations and continued support including for the<br />

Mega Home Lottery.<br />

24 <strong>Autumn</strong> 20<strong>16</strong> The MS Society of Western Australia The MS Society of Western Australia <strong>Autumn</strong> 20<strong>16</strong> 25

Wilson Outreach news<br />

Nicola Ryan, Outreach Coordinator<br />

NEWSFLASH: Due to popular demand, Wilson Outreach is<br />

continuing to travel around the world in 20<strong>16</strong>! An exciting time<br />

for us all, come and join in the mayhem any time you are passing!<br />

Last year we ‘visited’ China, India, Africa and Alaska all from<br />

the comfort of our ‘armchairs’. The Members participated by<br />

coming to the Atrium at Wilson. We ‘travelled’ together as a<br />

group doing various activities, and we had visiting groups to<br />

share their stories, traditions and entertain us all. Of course we<br />

all enjoyed eating the scrumptious local food from the different<br />

countries thanks to Giselle our cook and her trusty volunteers.<br />

When we weren’t travelling we enjoyed various quizzes,<br />

board games and craft activities as well as ventured out for a<br />

number of outings in the community.<br />

Our wonderful Outreach support staff have already met and<br />

planned the program for yet another fantastic year! Our<br />

destinations will include New Zealand in February, Mexico in<br />

May, Italy in August and finishing with Hawaii in November.<br />

Time certainly doesn’t stand still for our Outreach Members!<br />

Birthday time is always made special at Outreach, especially<br />

if milestones are reached, of which we’ve already had two<br />

in our first week back. Our lovely shop volunteer Darryl<br />

celebrated her 70th and care support worker Jaci Plaisted<br />

‘partied’ the day away for her 60th. We were even treated to<br />

Jaci and Frank breaking out into a tango together!<br />

Fern River – our 2015 in review<br />

Liz Stewart, Fern River Manager<br />

Oh where did 2015 go! It was such a busy year for both<br />

residents and staff at Fern River! We felt that we would like to<br />

share some of the highlights of our year.<br />

We were very lucky to be able to make a number of<br />

improvements including having three new gabled patio<br />

structures installed. Replacing the previous problematic<br />

shade sails has now provided us with both protection and<br />

shelter in all weather conditions. Not only are the residents<br />

sheltered when getting in and out of vehicles, but they also<br />

provide a large open communal entertainment and recreation<br />

area and a home for our vegetable and herb gardens.<br />

We also had a beautiful new communal kitchen installed,<br />

including a dishwasher (that really excited the staff!). The new<br />

kitchen provides a nicer, more effective working environment<br />

for the staff who provide the delicious meals for residents. It<br />

also has an accessible area where residents can enjoy getting<br />

involved with the food preparation, if they choose to do so.<br />

Several staff took up the challenge of volunteering one<br />

weekend and manned the Bunnings BBQ to raise funds for<br />

Fern River. Top of the list was a new wide screen TV that<br />

Sadly, we have also had to say goodbye to two of our beautiful<br />

Wilson Members already this year. Iris and Reemour were<br />

part of our very popular Thursday OT craft day and shared<br />

their talent as well as their lovely smiles with other Members.<br />

Both ladies will be sadly missed and we pass on our sincere<br />

condolences to Iris’s husband Peter and Reemour’s daughter<br />

Glenis; both of whom are well known at Outreach as they<br />

often dropped in with them.<br />

Reflecting on our time at Outreach, looking back at what we<br />

did last year and our plans for 20<strong>16</strong> makes us realise how<br />

important it is to be a part of such a caring family such as the<br />

one here at <strong>MSWA</strong>.<br />

Stop by for a cuppa and a piece of cake, stay the whole<br />

morning to catch up with friends, come to have a chat<br />

or play board games, or even if it’s just a quick “hello”<br />

while passing through on the way to other appointments,<br />

we encourage anyone who hasn’t yet visited us to make<br />

a point of coming to Wilson and saying hi in the very<br />

near future.<br />

now sits proudly in our communal recreation room where<br />

residents are able to enjoy watching movies together. We<br />

were also able to purchase additional gardening supplies<br />

including a new worm farm, compost bin, raised garden beds,<br />

herb planter, potting mix and seedlings.<br />

We love celebrations and these included an Australia Day BBQ,<br />

a family Easter brunch and egg hunt, a Halloween picnic, a<br />

Saint Patrick’s Day outing to AQUA, many trips to the movies<br />

and other outings including visits to Mandurah and Fremantle.<br />

We enjoyed a multi-cultural lunch with staff bringing in a dish<br />

from their homeland to share.<br />

We also shared with residents, families and <strong>MSWA</strong> staff, a<br />

lovely Christmas lunch with a very well-kept surprise visit<br />

from Santa, complete with Harley trike, and the day was<br />

thoroughly enjoyed by everyone who attended.<br />

Fern River welcomed two new residents in 2015 who are settling<br />

into their new routines and getting to know the other residents.<br />

We are all now looking forward to what 20<strong>16</strong> has in<br />

store for us as we reflect back on a very busy but<br />

enjoyable 2015!<br />

Southside Outreach news<br />

Angie Wallace, <strong>MSWA</strong> Member<br />

We were all very happy to resume our Outreach get-togethers<br />

after the Christmas break whether it was physio, massages,<br />

lunches or just a good gossip with friends. We are very<br />

fortunate to have these services and opportunities available<br />

to us each week.<br />

A big ‘thank you’ to our energetic, smiling taxi driver, Robert,<br />

who supplied and had installed a TV aerial on the roof of our<br />

building. What a difference it’s making!<br />

What a treat also for carers attending the <strong>MSWA</strong> Rottnest<br />

Island four day, three night Carers retreat! Carers John, Anne<br />

and Lorraine joined others for a relaxing and well-deserved<br />

break. Rosalie was the cook so we know they were well fed!<br />

Member Angie went to City Beach respite (her first respite<br />

stay!) while Doug went to Treendale Gardens.<br />

News from Eastside and Northside<br />

Outreach Groups at Beechboro Lodge<br />

Zoe Harrison, Resource Coordinator<br />

After a very busy year and the usual hectic December followed<br />

by a relaxing Christmas break, I would like to welcome all<br />

Members, vollies and staff back to Beechboro Lodge for 20<strong>16</strong>.<br />

As always, the lead up to the Christmas break was hectic<br />

with preparations for both the Eastside and Northside Groups<br />

Christmas parties. Once again the very popular Julie’s Kitchen<br />

provided plenty of lovely food and everyone was in the mood<br />

for the festive cheer.<br />

We were also lucky enough to have the WA Stage School<br />

volunteer their time to sing Christmas carols at both parties,<br />

Albany Outreach news<br />

Caroline Clark-Smith, Resource Coordinator<br />

Welcome back to a New Year!<br />

It has started off rather busy here in the Great Southern with<br />

Swim for MS in February!<br />

We have had a number of fundraising events happening<br />

with sausage sizzles, movie nights, morning tea and raffles.<br />

Congratulations to all those who participated by organising,<br />

volunteering to help, or supporting these events. I did my bit<br />

by having breakfast at three sausage sizzles; luckily not on<br />

the same day.<br />

It has been great to see a few more Members accessing<br />

massage, especially those who have come from out of town and<br />

managed to get one at short notice. If you are heading to Albany<br />

on a Friday, give us a call on 9841 6651 to check if there is a<br />

place available. Please leave a message so we can call you back.<br />

It’s good to see two of our old Members Cheryl and Leah<br />

back with us again. Our group is expanding – recently we<br />

served 30 meals for Friday lunch – for Members, carers and<br />

volunteers. That’s a lot of lasagne, Rosalie! Thank you!<br />

Our physio, Sharon, was courtside for some of the Australian<br />

Open Tennis in Melbourne – nothing like being there live for<br />

the action! Last year she had a visit to the Galapagos Islands<br />

and has produced a wonderful photo book of the amazing<br />

wildlife – turtles, iguana and her favourite, the blue-footed<br />

boobies (it’s a bird!) dance. We are all very envious, Sharon!<br />

On behalf of all of us here at Southside, we wish everyone<br />

a happy and healthy 20<strong>16</strong>. Well, as healthy as we can be!<br />

and Paul Robinson performed carols and some classic singalongs<br />

so we could all join in and have a little dance. It is<br />

always a really great way to end the year and everyone joins<br />

in the fun and games.<br />

We returned to Beechboro at the end of January just in time<br />

to celebrate Australia Day. We had Aussie Day quizzes, played<br />

some two-up and enjoyed a very Aussie BBQ.<br />

From both groups and all the staff and vollies at<br />

Beechboro, we wish everyone a belated happy new year<br />

and we look forward to a fantastic 20<strong>16</strong>!<br />

After the swim, we resumed having guest speakers and<br />

activities at the outreach group. If you have any ideas, please<br />

let us know and we can see what we can do.<br />

Maureen will be doing some talks on medications as well as<br />

other health issues, so we look forward to those happening in<br />

the months to come.<br />

Last year we participated in the Stationary Ride for MS and we<br />

hope to do that again later this year. Keep it in mind as it would<br />

be great to have a few more participants this time around.<br />

For those Members I have seen recently after not seeing<br />

them for some time, it has been great to catch up and I<br />

hope to see you again soon.<br />

26 <strong>Autumn</strong> 20<strong>16</strong> The MS Society of Western Australia The MS Society of Western Australia <strong>Autumn</strong> 20<strong>16</strong> 27

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