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MSWA Bulletin Magazine Winter 2017

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BULLETIN

THE OFFICIAL MAGAZINE OF MSWA mswa.org.au

WINTER 2017

PROTECT YOURSELF AGAINST THE FLU

THE RESILIENCE FORMULA

NEWLY DIAGNOSED MEET AND GREET

COMING TO GRIPS WITH MS


MSWA’S MAGAZINE FOR PEOPLE LIVING WITH MS

NURSING Our MS nurses are usually the first point of contact after the neurologist’s

diagnosis of MS. We’re committed to providing holistic supports; providing a greater

understanding of what to expect.

Lou Hatter, Manager: 9365 4809 or Community Nurse: 9365 4888

WILSON CENTRE

29 Parkhill Way (08) 9365 4888

Fax (08) 9451 4453

Freecall 1800 287 367

See Health Team Dept contacts on this page

PHYSIOTHERAPY Our team aims to provide treatment interventions to develop and

maintain mobility and function. Our Physiotherapists are experts in movement and function,

and work in partnership with you to attain the highest possible level of independence.

Dave Hathorn, Manager: 9365 4837 or Physiotherapy Department: 9365 4834

MEMBER SERVICES

DIRECTORY

GENERAL MANAGER – MEMBER SERVICES

Sue Shapland: 9365 4840

INDIVIDUAL OPTIONS

Manager Community

Care Programs 9365 4851

NDIS TEAM 1800 287 367

OUTREACH GROUPS

Wilson Outreach (Mon-Thurs): 9365 4830

Beechboro Lodge (Mon, Fri): 9377 7800

Southside Outreach (Fri): 9592 9202

Bunbury Outreach (Wed): 9791 2472

Albany Outreach (Fri): 9841 6657

BUNBURY OFFICE

1 Mason Street, Davenport 6454 2800

BUSSELTON OFFICE

1/21 Cammilleri Street 9754 2320

MARGARET DOODY RESPITE HOUSE

Manager, Chris Rush: 9385 9574

FERN RIVER ACCOMMODATION

Manager, Liz Stewart: 9356 2747

HAMILTON HILL ACCOMMODATION

Manager, Jayne O’Sullivan: 9331 5780

TREENDALE GARDENS RESPITE &

ACCOMMODATION

Manager, Linda Kidd: 9725 9209

CONTACT US

If you would like to comment

on anything you read in this

Bulletin please email

bulletin@mswa.org.au

or write to

MSWA, Locked Bag 2,

Bentley DC WA 6983

The Bulletin can also be viewed at

mswa.org.au/bulletin

EDITORIAL COMMITTEE

Greg Brotherson (Editor), Marcus Stafford (CEO),

David Bugden, Sue Shapland, Ros Harman,

Libby Cassidy, Sandra Wallace, Narelle Taylor,

Leonie Wellington, Sarah Lorrimar, and Dawn Burke.

The Editor welcomes unsolicited submissions.

All articles are subject to a reviewing process.

The views expressed are those of the Authors

and do not necessarily reflect the view of the

Society’s staff, advisors, Directors or officers.

OCCUPATIONAL THERAPY Occupational Therapists enable Members, and Clients,

to continue their work and other interests for as long as possible through advice, aids

and equipment.

Rosemarie Dravnieks, Manager: 9365 4804 or OT Department: 9365 4888

SPEECH PATHOLOGY Our Speech Pathologists provide support by assessing,

diagnosing and creating individualised treatment programs for Members who experience

swallowing and/or communication difficulties. We equip Members with information and

strategies to promote better communication and safe swallowing.

Jamaica Grantis, Speech Pathologist: 6454 3140

COUNSELLING Talking with a Counsellor creates a safe, respectful and confidential

environment for you and those close to you to explore options, create change or

gain understanding about your life. Attending counselling with our tertiary qualified

practitioners enables opportunity for personal growth and exploration in a nonjudgemental

environment. To make an appointment please call:

Lisa Papas, Manager: 9365 4836 or Main Counselling line: 9365 4811

SOCIAL WELFARE Social Welfare Officers assist people living with MS and their

families to access services and supports to remain living independently at home.

They specialise in case management, advocacy and sourcing funding options.

They provide information on benefits and entitlements through Centrelink and other

government departments.

Irene Gallagher, Senior Social Welfare Officer: 9365 4835

INDIVIDUAL OPTIONS We provide long-term and time limited in-home supports

including assistance with personal care for people with MS, to help them remain in their

homes. Care and supports are provided through a combination of funding from the

Disability Services Commission (DSC) and our own fundraising efforts. We manage both

DSC and NDIS individually funded care packages.

Contact us on 9365 4851 for more information.

THE NDIS TEAM We provide a convenient and fast one stop shop to enable you to

easily transition to the NDIS as it becomes available in your area. We help you determine

whether you are eligible for assistance under the NDIS; we guide you through the

application process and then we help you develop a comprehensive NDIS plan to

maximize your entitlements. We support people with all neurological conditions.

Mark Douglas, NDIS Operations Manager: 9365 4824

CAMPS & RECREATION MSWA provides separate recreation camps for Members,

carers, and families, primarily funded by Lotterywest, and for a nominal cost to participants.

These camps provide a break from daily routines, and strengthen friendships and

support networks.

Coordinator for Camps & Recreation: 9365 4843

2 | MSWA BULLETIN WINTER 2017


Letter from the MSWA President

GEORGE PAMPACOS

It is with great sadness I advise that after 15 years as CEO,

Marcus Stafford has decided to resign from MSWA.

Although this may come as a surprise to many, to ensure

preparedness and continuity, Marcus flagged his plans to the

Board and members of management some time ago.

In the time that Marcus has been at the management helm,

MSWA has gone from strength to strength. This year MSWA

will post record revenues, record levels of Member and

Client services and a record contribution to research. Our

foundations for a successful future have never been stronger.

Marcus also spearheaded the rescue and turnaround of the

MS Society of South Australia and the Northern Territory.

Although incredibly sorry to see Marcus go, I respect and

understand his wish to pursue some of his other career

interests, including management consulting, public speaking

and Board directorships. I am confident his experience and

leadership will allow him to make a broader, positive difference

to Western Australia’s business and social community.

It is critical MSWA doesn’t lose momentum and Marcus has

confirmed that he will remain as CEO until his successor

is appointed and an appropriate handover period has

taken place. Timings are always difficult to forecast with

senior roles, but it is likely Marcus will continue as CEO for

most, if not all of 2017, so there will be plenty of time for a

proper farewell.

Regards,

George Pampacos

MSWA President

Inside | Winter 2017

Letter from the MSWA President 3

Letter from the Editor 4

From the desk of the CEO 5

A message from the General Manager

– Member Services 6

Marcus honoured with Order of Australia 7

Our Core Values 7

Round-up of research and other items of interest 8-9

The NDIS continues to benefit more people in WA 10

An overview of the Annual Member Survey – 2016 11

Did you know that MS may affect your

thinking and memory? 12

The resilience formula 13

It’s worth the effort 14-15

Newly Diagnosed Meet and Greet 15

Occupational therapy in persistent pain care 16

Protect yourself against the flu 17

That’s Life with Narelle 18

Meet Ms Carer 19

The present 19

Auld Acquaintance, Not Forgot 20

Mindfulness Meditation 21

MSWA Volunteering News 22-23

Coming to grips with MS 24

South West regional round up 25

Albany Outreach News 26

Wilson Outreach news 26

Geraldton Trip 27

Northam morning tea 27

MSWA BULLETIN WINTER 2017 | 3


Letter from the Editor

DR GREG BROTHERSON

Welcome to the winter edition of your Bulletin and greetings

from MSWA’s Treendale Gardens Respite in Bunbury where

I’m currently a guest while my wife takes a well-earned

break. I must say that the country looks dry and hopefully by

the time this Bulletin reaches you the rain will have arrived

and seeding will be underway. When asked about the need for

rain one farmer told me, “We are a hopeful, hardy lot.” Now

that’s something people with multiple sclerosis (MS) know all

about - hope for the future.

You will have read the letter from the President of MSWA,

George Pampacos, notifying you of the resignation of MSWA’s

CEO Marcus Stafford, after 15 years at the helm. I must say

the news left me rather drained as it did with many other

people I’ve spoken with. Fifteen years is a long time to be

associated with such a pleasant, talented person with a

seemingly endless appetite for work. People with MS have

much to thank him for, and of course it is only natural that

such a popular person who left his mark wherever he went

will be missed by each and every one of us.

In this issue of your Bulletin, Sue Shapland provides us with

some insight as to what it has been like to be a senior manager

and member of Marcus’ management team. Sue also talks

about the roll out of the National Disability Insurance Scheme

(NDIS), with all its benefits and challenges. Of particular

interest to the 676 Members who are 65 years of age and

older is that the aged care sector will have their revamped

model commencing this year.

Looking into the future, Nigel Carey, NDIS Business Manager,

tells us about all the benefits the NDIS is bringing to the lives

of people with MS and other neurological conditions who are

Members and Clients of MSWA. Nigel discusses the rollout

of the scheme and how you can get in touch with the MSWA

NDIS team. These experts are always available to advise you

on the benefits you are entitled to and to help you develop

plans which maximise the services you can receive.

Sue Shapland brings you the latest research round-up and

the exciting news that Ocrelizumab (Ocrevus), the first drug

to show some promise for people with progressive MS, has

received FDA approval in the U.S. We hope that approval of

the drug will follow quickly here in Australia and be made

available on the PBS.

Counsellor Simon Rolph offers three solutions to any

problematic situation no matter what it is. This is called the

resilience formula. Sarah Lorrimar, Peer Support and Health

Education Coordinator, tells us about mindfulness meditation

to help clear our minds and become more aware of ourselves

and our environment.

In combination with mindfulness, Ian Cheok, MSWA

Occupational Therapist (OT), discusses how OT’s can help

people cope with and manage their pain. An OT may be able

to help you navigate the system and find the right resource

to help you.

Sue Shapland also brings you an overview of the results of the

recent Member Survey. A big thank you also goes out to the

783 Members who took the time to complete this survey. This

is a significant contribution, and a great help in the planning

of future services to the Membership. Your suggestions are

also appreciated.

Dawn Burke gives us the latest on volunteering focussing on

National Volunteers Week and a delicious luncheon that was

organised for our volunteers. This luncheon is MSWA’s way of

acknowledging the efforts of our volunteers and the time they

give to us, and to let them know how appreciated and valued

they all are to all Members and MSWA staff.

You will find our usual look at MS from different perspectives

by Ros, Narelle and Dr Ong. We also have two biographical

stories from Members, which are always welcome, and

something really special and rather different from the

perspective of a carer.

Finally, there is some Outreach news, where you are

always welcome. Stay warm, safe and from the team of

writers who bring you this issue of your Bulletin, we look

forward to you enjoying what we have for you.

4 | MSWA BULLETIN WINTER 2017


From the desk of the CEO

MARCUS STAFFORD

I remember it like it was yesterday ... but it wasn’t! It was, in

fact, a little over 15 years ago that I sat down to write my very

first article for the Bulletin.

For a range of reasons, I found it tricky to write. To start with,

I knew nothing! But I was aware that many were looking at

their new CEO with a degree of expectation. The Board has

hired this guy; let’s see what he has to say.

The Multiple Sclerosis Society of Western Australia, as it

was known then, had a rich and worthy history. It was a

fine organisation, full of fine people. My job was to take us

forward. Trouble was that I didn’t know where!

My first article talked of exciting futures and a commitment

to people with MS. As I write this Bulletin article, cognisant of

the fact that it will be one of my last, those words ring as true

today as they did then.

After 15 years of leading this organisation, it is time for me to

do some other things in my career. It is time for me to pass

the baton to some lucky soul who will have that same feeling

of honour that I have experienced. Without knowing who that

person will be, I can only wish them every success and hope

that they will enjoy the journey as much as I have.

It has been a real pleasure, brimming with immense pride

and satisfaction to watch our organisation grow year on year

to the leader it is today. We always came from a good place,

which makes the CEO’s job so much easier. ‘Back then’, I

would look at our $5 million in revenue and 170 staff and

dream about where I hoped we could be. It’s a good feeling to

hang up my MSWA spurs, on a record breaking year, with an

annual revenue of over $50 million and 700 staff. 700 staff

who are doing amazing work to help people with MS and

other neurological conditions. We’ve never been stronger and

our future will be both safe and sparkling.

Gracious CEO’s talk about ‘the great team effort’ because

they’ve read in the CEO handbook that is the thing to do! Some

mean it; some don’t! I really mean it. And I mean - really!

In my time, I have been privileged to work with a Board of

Directors that has shown the wisdom of knowing when to go

conservative and when to support a more ambitious stance.

A Board that has represented all stakeholders and people at

all stages of MS.

I have worked with the very best senior managers who have

deployed commercial acumen, whilst never forgetting the

people who we are here to serve. How lucky am I to have

worked with them for just about all my 15 years? I applaud

their loyalty!

Long after I have become a distant memory of ‘that bloke who

used to work here’, the broader team of Board, management,

staff, Members and volunteers will continue to write us into

the record books. I am totally confident that, until the cure

is found, that broader team effort will lead to the ongoing

improvement in the lives of people with MS and other

neurological conditions.

In many respects, this Bulletin article is somewhat premature!

I’m going on to do things like management consulting, key

note speaking and will be sitting on a couple of Boards, so

there is no deadline attached to my resignation. I just feel that

it’s the right time. In fact, to ensure that MSWA’s momentum

isn’t lost, I’ll be your CEO until the budget year is formally

closed out, my successor is found and we have worked

through the handover process. That will be most, if not all of

2017. Plenty of time to say proper goodbyes.

When I sat down to write that first Bulletin article, all

those years ago, my wildest dreams never imagined over

15 satisfying years working in the best organisation in

Western Australia. Neither did I expect to be the author

of 60 articles in the Bulletin!

Thank you for having me!

Do you want to receive the Bulletin online?

Want monthly information updates?

Register your email address today to start receiving our

monthly Vitality e-newsletter and the Bulletin magazine online.

Just email donna.hill@mswa.org.au or call 9365 4869

and let us know your current email address.

MSWA BULLETIN WINTER 2017 | 5


A message from the General Manager –

Member Services

SUE SHAPLAND RN, BN

“When you can’t change the direction of the wind – adjust your sails,”

H. Jackson Brown, Jr.

I think this quote has relevance in many ways. People

living with MS I am sure can relate to having to make some

adjustments of their sails throughout their individual journey;

some people probably more times than others.

As you are aware, the winds of change continue to blow

across the disability sector, with the roll out of the National

Disability Insurance Scheme (NDIS) with all its benefits and

challenges, and with the aged care sector commencing their

revamped model this year.

The NDIS in WA continues to roll out, although we are still

unclear on the new Government’s review of the previous

decision. Whilst increasingly we hear of challenges and issues

with the NDIS in the Eastern States mainly due to the sheer

volume and timeframes involved.

Then of course there are the internal MSWA changes that

have been recently announced which include the imminent

retirement of Dave Bugden, General Manager of Brand,

Marketing and Sales, and the resignation of Marcus, our

CEO. These departures are huge for most of us at MSWA

Members, staff and volunteers included – as both have played

pivotal roles in steering MSWA into the successful position we

proudly hold today.

For over 15 years now, Dave Bugden has been vital to our

success in fundraising and raising our brand awareness.

The Funds raised have allowed Member Services to continue

to grow programs, staffing and build numerous facilities

including Treendale Gardens, Hamilton Hill and the Bunbury

Community and Health Services Hub. I would personally like

to thank Dave for his hard work and untiring support of all

things MSWA; enjoy your well-earned retirement!

As for Marcus, where do I start? I was very fortunate to

be recruited by Marcus in 2003 and feel privileged to have

worked with him, and our Senior Management team, over the

past 14 and a half years. MSWA today is almost a world away

from when we started thanks to his commitment, business

acumen, dedication and vision. Our success, and the very

solid position in which he will leave us, has been as a result of

hard work and innovation, the support of an excellent Board

and our greatest asset – our staff and volunteers! We will all

miss Marcus but thank him for his undying commitment over

the past 15 years and wish him well on his future endeavours.

We have recently had another MS treatment approved under

the PBS, Zinbryta, and eagerly await approval for Ocrelizumab

which is also the first product to have also shown promise for

people with progressive MS.

There are several positive changes imminent with our

proposed re-location of the Wangara office to a larger, more

suitable premises in Joondalup. We will also be seeking new

premises in Armadale, Mandurah and Busselton to be more

accessible for Members and NDIS Clients in those areas. Our

Butler services hub and high support accommodation complex

will also commence construction later this year. MSWA is

very fortunate to be able to fund such expansions and bring

services closer to home for our Members and Clients.

Once again, we will be allocating a record amount of funds

to MS Research this year. We will bring you updates on the

allocation of the funds and outcomes from research already

funded by MSWA.

The Member Services team continues to grow and add new

programs and MS resources for our Members. For example,

we now have massage in several new regional areas including

Geraldton, Northam, Manjimup and Margaret River.

Our annual MS Awareness Week Members’ Forum was

held on June 2 this year and I’ll provide an overview of the

presentations in our next Bulletin.

Please don’t forget our Member Services team is here

to help you. Whether it’s for information on the latest

treatments or lifestyle advice, research updates or

a service you require please don’t hesitate to make

contact. We are a phone call away and can be reached on

08 9365 4888 or email us at get-in-touch@mswa.org.au

Want to access research articles?

Here are the places you can access up to date research

articles relating to multiple sclerosis:

• Vitality – Our monthly research focussed e-newsletter

• Our website – https://mswa.org.au/news/latest-news

• Right here as part of your Member magazine Bulletin.

It includes great research articles and information every quarter.

Just email communications@mswa.org.au if you would like any further information.

6 | MSWA BULLETIN WINTER 2017


Marcus honoured with Order of Australia

It was incredible to learn of our very own CEO, Marcus

Stafford, being honoured with a Member of the Order of

Australia in the General Division last month.

In recognition of his significant services to people with a

disability, and to community health, through support for those

affected by multiple sclerosis, Mr Stafford has been awarded

a Member of the Order of Australia in the General Division.

Marcus started in his role as our leader over 15 years ago, and

since then has turned MSWA into one of the most successful

not-for-profit organisations in Western Australia.

Our President, George Pampacos had this to say on learning

of the Award, “Due to his amazing work Marcus has improved

the lives of people living with MS and other neurological

conditions not only in WA but nationwide. He has always had

a long-term vision about where he wanted MSWA to be and

most importantly how it could be achieved. He is a natural

leader who has been able to rally and inspire the team at

MSWA to achieve incredible things. There’s no doubt the

organisation is as successful as it is because of his guidance.”

Jayne O’Sullivan, the manager

of MSWA’s Hamilton Hill high

support accommodation facility

said Marcus’s management style,

compassion and drive filtered

throughout the organisation.

“Most of us base the way we work

on what we see. The culture of

MSWA is formed from what we see

at the top. Care, compassion and hard work. We just want to

do what’s best for our Members to make their lives better and

that comes from Marcus,” said Jayne.

“I’ve been at MSWA for 20 years and the organisation has

come along in leaps and bounds since Marcus became

CEO. In terms of the services being offered and funding for

research, it just gets bigger and better every year.”

Marcus, from everyone at MSWA we congratulate you on

this very richly deserved recognition.

In everything we do at MSWA, our Staff, Volunteers

and Board proudly demonstrate our Core Values.

OUR CORE VALUES

We are proud to be part of MSWA.

As a team, these are the values we strive for.

PROFESSIONALISM

We commit to fostering an environment

of professionalism and excellence by:

• Encouraging innovation

• Supporting continuous improvement

and professional development

• Setting the highest standards

in all that we do

SERVICE

We commit to providing the

best possible service by:

• Acting in a responsive and timely manner

• Understanding, enabling and empowering others

• Promoting awareness and shared

knowledge, both internally and externally

TEAMWORK

We commit to working

together as a team by:

• Encouraging a unified

approach to our shared goal

• Communicating openly and honestly

• Recognising the value of

each other’s contribution

RESPECT

We commit to respecting

and valuing one another by:

• Encouraging and empowering each

other to reach our full potential

• Always maintaining our integrity and ethics

• Honouring our commitments and promises

MSWA BULLETIN WINTER 2017 | 7


ROUND-UP OF RESEARCH

AND OTHER ITEMS OF INTEREST

SUE SHAPLAND RN, BN

From the UK MS Trust site:

Tracking daily fatigue fluctuations in multiple sclerosis:

ecological momentary assessment provides unique insights

Powell DJ 1,2 , Liossi C 3 , Schlotz W 3,4 , Moss-Morris R 3,5 .

Studies investigating the prevalence, cause, and consequence

of MS related fatigue use single measures that imply

symptom-stability over time; not gaining information about if,

when, and why severity fluctuates.

This study sought to examine the extent of moment-to-moment

and day-to-day variability in fatigue in relapsing-remitting

MS (RRMS) and healthy individuals, and identify daily life

determinants of fluctuations.

Seventy six participants (38 RRMS and 38 controls) provided

real-time self-reports six times daily. 1,661 reports were

analysed measuring fatigue severity, stressors, mood, and

physical exertion, and daily self-reports of sleep quality. Fatigue

fluctuations were evident in both groups; however, fatigue was

highest in RRMS, typically peaking in late-afternoon.

Many of the factors in daily life that influence fatigue were

similar for both people with and without MS, but physical

activity seemed to have a greater effect on people with

MS, and a poor night’s sleep had a greater effect on people

without MS.

The researchers concluded that a better understanding of

the changing levels of fatigue experienced by each person

provides opportunities to develop personalised strategies for

managing fatigue.

When can you safely stop taking disease modifying drugs?

There is very little evidence to suggest

who can safely stop taking disease

modifying drugs (DMDs). An American

study has compared the experiences

of people who stopped taking DMDs -

those advised to stop and those who

chose to stop.

The first group consisted of 77 people with secondary

progressive MS with no clinical or MRI signs of MS activity for

at least two years. They had been advised to stop treatment

(advised group). The second group consisted of 17 people

with RRMS who chose to stop taking their treatment (chose

group). People in both groups were assessed at the time of

stopping DMDs and monitored for recurrence of MS activity

(relapse or MRI lesions) for at least one year after.

Twelve per cent of those in the advised to stop group and

59% of those in chose to stop group had recurrence of MS

activity, within two years of stopping treatment.

The investigator reported that it may be safe to stop DMDs

in older people (70 years or older) who have been free of

MS activity for at least two years, although monitoring for

recurrence of MS activity is warranted.

However, younger people with relapsing-remitting MS

choosing to stop their DMD have a 60% likelihood of further

MS activity, underlining the importance of continuing with

treatment for this group.

Promising results from long term studies of stem cell transplants

Two recently published studies reported data on levels of

disability in people with MS five years after receiving stem

cell transplants.

In one study, researchers sought data from 25 centres which

had used a range of stem cell treatment methods to treat

people with either relapsing or progressive MS between

January 1995 and December 2006. They reported that five

years after treatment, just under half of the 281 people for

whom data was available had not experienced an increase in

their disability.

A second study reported long-term results of stem cell therapy

in 24 people with highly active RRMS. After five years, about

two thirds continued to show no relapses, no progression and

no new lesions.

Both studies acknowledged that to fully assess the risks

and benefits of stem cell treatments and understand where

they fit into current MS treatment options, we really need

evidence from controlled, randomised clinical trials directly

comparing stem cell treatments against other treatments in

both relapsing-remitting and progressive MS.

Read more at:

mswa.org.au/researchupdate

8 | MSWA BULLETIN WINTER 2017


From the International Progressive MS Alliance site:

Ocrelizumab (Ocrevus)

The first disease modifying therapy for primary progressive

MS, Ocrelizumab, has received FDA approval in the U.S.

Prof. Alan Thompson, Chair of the Alliance’s Scientific

Steering Committee and Dean of University College London

Faculty of Brain Sciences said, “One cannot underestimate the

importance and impact of the very first treatment for primary

progressive MS. This is the crucial first step in finding ever

more effective treatments for everyone with progressive MS.”

From the newly revamped MS Research Australia (MSRA) site:

Re-purposing for progressive MS - a new trial on Simvastatin

A large-scale phase 3 trial will soon begin in the UK. The trial

will investigate whether the commonly used and inexpensive

cholesterol-lowering drug Simvastatin, could potentially

become a treatment for Secondary Progressive MS. This is

a global collaboration costing more than A$10.4 million, with

over 1,000 people with MS around the world involved.

Can cognitive therapy treat depression?

People with MS are more likely to suffer from depression than

the general community, especially when newly diagnosed. Whilst

there are a number of psychological treatments available, only a

few are designed specifically for depression in people with MS.

Researchers at the University of Melbourne are conducting

a trial directly comparing two different therapies, a cognitive

behavioural therapy, which is a talk therapy that helps

individuals learn skills about thinking and behaviour, and a

supportive listening therapy, which is another type of talk

therapy that involves talking about your problems.

The community knowledge gap about MS

People with MS commonly report that the general public don’t

understand their disease. A recent survey of 1,000 people,

commissioned by MSRA has shown that:

• Whilst approximately 7.3 million Australians know someone

with MS, only half of all Australians actually know what MS is.

• Four in ten of those knowing someone with MS were unable

to describe what the disease is.

• More than 50% didn’t realise MS is predominantly diagnosed

in young adults (average age of diagnosis being 30)

• They weren’t aware that MS largely affects women.

• They have the perception that all people affected by MS

could not remain employed.

These results reaffirm what the MS community already

knows; greater awareness is desperately needed.

From the National MS Society

Study finds links between risk of MS in

children and low vitamin D and obesity

New research, partly funded by the

National MS Society, found that being

overweight and having low blood

levels of vitamin D increased the risk

for children to develop pediatric onset MS.

The study examined blood samples from 569 non-Hispanic

whites with MS from pediatric MS centers around the U.S. and

Sweden, and matched them with 16,251 people without MS.

The report states that approximately 5% of people with MS

experience symptoms before the age of 18. Whilst there is

strong evidence of the relationship between low vitamin D

levels and increased risk of adult MS, few studies have looked

at whether this applies in pediatric MS.

Scientists from several institutions used genetic risk scores

(GRS), based on DNA information, to confirm these links.

These results add to the growing evidence of genetic and

environmental factors in the risk of developing pediatriconset

MS. Knowing that both low vitamin D levels and obesity

are risk factors has potential implications for preventing MS

in children and adults.

From News Medical Life Science’s web site:

Skimpy sleep followed by ‘catch

up’ tied to worse cognition in

young adults

Baylor University researchers

have found that skimping on

sleep, followed by ‘catch-up’

days with long snoozes, is

linked to worse cognition – both

in attention and creativity – in

young adults, particularly, those tackling major projects.

The study, involving interior design students, also challenges

a common myth that “the best design ideas only come in

the middle of the night”, as researchers found the opposite.

“Consistent habits are at least as important as total length of

sleep,” study co-author Michael Scullin, Ph.D said.

The National Sleep Foundation recommends that young adults

have seven to nine hours of sleep each day.

MSWA BULLETIN WINTER 2017 | 9


THE NDIS CONTINUES TO

BENEFIT MORE PEOPLE IN WA

NIGEL CAREY, NDIS BUSINESS MANAGER

The NDIS continues to grow rapidly and attract new

participants across all of the WA trial site areas.

The full list of the trial sites is as follows:

• Lower South West

• Cockburn and Kwinana

• Armadale, Serpentine - Jarrahdale and Murray

• City of Swan, Kalamunda and Mundaring

• Bayswater, Bassendean, Toodyay, Chittering, Northam

and York

These sites were joined on July 1 by the new WA NDIS areas of

Mandurah and Rockingham. We will be contacting all MSWA

Members, living in these two areas, to discuss the benefits of

the scheme and guide them through the application process

if they are interested.

In the interim, do contact our friendly NDIS team at MSWA if

you have any immediate questions about the NDIS, eligibility

or what it can offer. This is particularly relevant if you are

nearing the age of 65 as this is the ‘cut off age’ for you to be

eligible to enrol.

We are also holding a series of NDIS information sessions,

which started in June, in both Mandurah and Rockingham.

Details on upcoming information sessions can be found on

our website – mswa.org.au

It should be noted that there will be no further expansion of

the NDIS in 2017 after Mandurah and Rockingham. The next

trial sites will commence in July 2018 in the following areas:

• Fremantle, Melville, South Perth

• Goldfields Esperance

• Joondalup, Wanneroo

We are often asked to provide actual examples of how the

NDIS can help you.

The following examples illustrate how comprehensive the

NDIS can be in helping people to more fully participate in

everyday life.

1) Maintaining your independence in the home

The NDIS funding actively supports people to continue to live

in their own homes.

Did you know MSWA provides a wide range of personal care

services such as helping with dressing and taking a shower?

We also help with preparing meals, shopping and cleaning

homes. MSWA also ensures Clients remain safe and mobile

by installing ramps and rails throughout the house all of which

can be funded through your plan.

2) Keeping in touch with your family and community

We have Members and Clients who may feel rather isolated

and wish to participate more fully in the community. The NDIS

helps fund transport to and from community events, children’s

sporting events and social occasions. The NDIS also provides

physiotherapy to increase mobility and counselling and

speech therapy to increase social confidence.

3) Maintaining employment

The NDIS supports people who want to remain in employment

once they have been diagnosed with a neurological condition.

For example, you may run your own business but fatigue

issues may be affecting your ability to effectively manage

both your work and home life. The NDIS can provide funding

that will allow you to manage your fatigue and cognitive

issues, including occupational therapy assessments of your

work place and transport to work on days you can’t drive.

Our MSWA NDIS team is always available to advise you

on the benefits you are entitled to and to help you develop

plans which maximise the services you can receive. Our

key objective is to deliver a very smooth and easy customer

journey for our Members and Clients.

To this end we have recently added a new Client Relationship

Coordinator, Annabel Vasquez, to our team to further enhance

our customer service.

Please contact any of the following MSWA NDIS team

members for more information on the NDIS:

Christine Richards: Client Relationship Coordinator

Email:

christine.richards@mswa.org.au

Phone: 9365 4867

Pranjal Pawar: Client Relationship Coordinator

Email:

pranjal.pawar@mswa.org.au

Phone: 9365 4810

Annabel Vasquez: Client Relationship Coordinator

Email:

annabel.vasquez@mswa.org.au

Phone: 9365 4806

Finally, your chance to win a $100 shopping voucher!

All you need to do is answer the following three questions:

• Which two new NDIS areas started on July 1?

• Name three services that MSWA provides under the NDIS.

• Name one of the people you can contact at MSWA to learn

more about the NDIS.

Email your answers to nigel.carey@mswa.org.au now

with ‘Bulletin Quiz’ in the subject header.

However, be quick! Only the first three correct responses

will win a $100 shopping voucher!

10 | MSWA BULLETIN WINTER 2017


AN OVERVIEW OF THE ANNUAL

MEMBER SURVEY – 2016

SUE SHAPLAND RN, BN

Firstly, I would sincerely like to thank the 783 Members

who responded to our annual survey! This survey is an

important feedback mechanism for determining satisfaction

levels and unmet needs, whilst also providing an insight into

demographics such as age and location.

Survey Responses by Age Group

800

600

400

393

624

How much does your MS affect you?

612

215

523

225

172 196

173 153

200

97

3 30 34

47

0

18-24 25-34 35-44 45-54 55-64 65-74 75Yrs

+

2016 responses by age Ages of Members on MSWIMS

• 80% of respondents were female and 20% male

• 73% live in the metro area

• 95% told us they read the Bulletin!

30%

32%

9%

30%

Not at all

A little

More than a little,

but not a lot

A lot

Do you currently use any mobility aids?

44% responded yes 56% responded no

Are you always treated with care and respect

when you contact MSWA staff?

99.55% responded yes 0.45% responded no

Overall how would you rate our services? 727 responses

97.4% said satisfied or very satisfied

2.6% said dissatisfied or very dissatisfied

Do you know about the NDIS? 738 responded

76.4% responded yes 24% responded no

How likely are you to recommend MSWA as a service

provider to others?

Likely / very likely 96.6%

Unlikely / very unlikely 3.4%

Whilst we received some great feedback and congratulations

on our services, we also received many useful comments

regarding gaps in services and also letting us know that

we don’t always get it right. This helps us to reflect and

encourages us to always strive for improvement.

Top 10 reported MS symptoms/problems experienced.

Fatigue 82% 605

Heat intolerance 72% 537

Balance 67% 497

Weak legs 58% 427

Muscle weakness 56% 415

Numbness 46% 343

Pins and needles 44% 326

Incontinence; bladder/bowel 43% 316

Muscle spasms 42% 308

Muscle stiffness 42% 308

Some comments from Members

“A comforting and helpful environment that is a pleasure to

be part of.”

“Fortunately, I can manage my symptoms at present so do

not require assistance. Very satisfied with support that is

available should I need it.”

“For me MSWA plays an important role in my life by giving

me peace of mind in knowing work is being done to find

a cure for MS, and that if my condition progresses in the

meantime I will have support services at the ready.”

“I am happy to know that if the time comes, the service is

available when I will be in need. Thank you.”

“For Members in full time employment, it would be useful

to have more seminars/services available outside working

hours. This would truly support people with MS who are

working. Thanks for all the services and support.”

“I am happy with what you provide. I am not as bad as a

lot of people. If and when I get worse I will call on your

assistance. Thank you.”

“I find there is little to no support outside the Metro areas.

Also having very mild/little disability there will be even less

under NDIS.”

“I used to live down South where there wasn’t support, now

after moving to Rockingham I’ve got all the support I need.”

MSWA BULLETIN WINTER 2017 | 11


DID YOU KNOW THAT MS

MAY AFFECT YOUR

THINKING AND MEMORY?

MSWA OTs with the postcards.

Some people living with MS may experience some form

of change in their cognitive function. However generally

these changes are often mild and can be referred to as a

hidden symptom.

Only a small percentage of people with MS will experience

a significant impact on their thinking abilities. Maintaining a

healthy lifestyle, accessing support and adopting practical

strategies can help to manage these changes.

Common symptoms of cognitive changes include being easily

distracted, taking longer to respond to a question, forgetting

names or planned tasks, difficulty following a conversation,

difficulty multi-tasking and being unable to think quickly.

Some cognitive changes are temporary whilst others may be

more permanent.

It is important to identify any changes to your cognition

when the issue arises and to seek the appropriate support to

manage these changes. MS experienced health professionals

such as neurologists, MS nurses and MSWA Occupational

Therapists can provide advice and practical information to

help reduce the impact of changes to your cognition.

The following strategies can be undertaken by you, and your

friends and family, to help with everyday tasks!

For the person with MS

• Be organised, have a place for everything.

• Use a note book, or your smart phone, to write lists.

• Have a calendar for you and your family.

• Let your support people know about your thinking changes

or challenges.

• Use alarms on your smart phone when cooking or for your

medication prompts.

For friends and family

• Discuss one topic at a time.

• Allow time for the person to respond.

• Make sure you have their attention.

• Put things back where they belong.

• Add your appointments to the family calendar.

It’s not just brain lesions that can cause cognitive changes.

Lack of sleep, fatigue, stress and some medications, for

example, can all impact on thinking.

Developing a healthy lifestyle which incorporates the following

brain health tips can be helpful:

Get regular sleep

Sleep helps restore the brain by flushing out toxins that build

up during waking hours. Sleep is also helpful for storing our

memories. A good goal is to aim for seven to eight hours sleep

per night.

Keep active

Whatever is good for your heart is good for your brain! Physical

activity increases blood flow to the brain which helps with

growth of brain cells.

Challenge your brain

Your brain is a muscle, it needs exercise too! Challenging

the brain helps strengthen and build new brain cells. Learn

something new every day, pick up a book, take up a hobby or

research something you’re interested in.

Rest and relax

Fatigue can affect the way we think. When we are more alert,

we are more able to manage our day to day lives. Regular rest

and relaxation can help you achieve a clearer mind.

Socialise

Social activities that involve mental and physical stimulation,

like singing or team sports, benefit our brain health. Catch

up with family or friends, or get to know your neighbours to

stimulate your brain!

Eat well

A balanced diet helps our brains function properly. Enjoy a

variety of foods and cut back on saturated fats. Follow the

Australian Dietary Guidelines or liaise with your GP or dietitian.

MSWA has developed a series of postcards which feature

information on cognition and brain health. If you would

like a copy or for any other queries, please contact the

MSWA Occupational Therapy or MSWA Nursing team

on 9365 4888.

References: MS Australia

12 | MSWA BULLETIN WINTER 2017


THE RESILIENCE

FORMULA

SIMON ROLPH, MSWA COUNSELLOR

When people come to counselling, a common request I hear

is, “Just tell me, what should I do?” Counsellors cannot

directly answer this question. Lives are complex, we are all

unique individuals and it is impossible to offer a one size fits

all solution to everyone. Counselling is not a mathematical

formula; people are not numbers.

Having said that, there is one formula that I regularly use

with the people I work with, that offers three solutions to any

problematic situation no matter what it is. It’s called - the

resilience formula.

Option One – Leave

Whenever we are in a problematic situation, the first option

is to leave.

For example:

• If in an unhappy relationship, leave the relationship.

• If in an unsatisfying job, find a different job.

• If living in an area with undesirable employment/social/

weather options, move to a more desirable area.

There is no guarantee that the consequence of leaving will be

an improvement, but based on the information available, you

need to decide if there is a greater chance of improving your

life if you do leave. However, leaving isn’t always an option.

There are times when the reality of our situation prevents

us from leaving. This might be due to financial reasons,

emotional reasons or even physical restrictions. If leaving is

not possible there are still two more options available.

Option Two – Stay and change what can be changed.

Accept what can’t be changed. Live by our values.

If we can’t leave, we stay. But staying in a problematic situation

doesn’t mean we passively accept the situation. We identify

what we have control over and try and influence change to

improve our lives as much as possible. Even if changes are

small, they can still lead us towards a more purposeful and

fulfilling life.

There will always be aspects of our lives that we cannot

change. Other people, the weather, a chronic diagnosis such

as multiple sclerosis. As much as we want other people to

be different, as much as we wish the weather to be hotter/

colder/wetter/dryer (select personal preference), as much as

we wish we didn’t have to live with a chronic diagnosis, some

things are unchangeable. So, we accept certain realities, offer

ourselves compassion in the face of these painful realities,

continue to change what can be changed and be guided by

our values to live a meaningful and vital life.

Option Three – Stay, give up and do things that make

life worse.

We have all done option three. We have all stayed in a

relationship too long, a job too long, lost any hope for change

and made the situation worse through our own behaviour.

Whilst many of us do not actively chose option three (some

do), through a sense of hopelessness we can all give up at

times and fall into self-defeating patterns of behaviour that

contribute to our own suffering.

If we are aware of these options, this knowledge prevents

us from passively falling into option three. We can still

actively choose option three but it then becomes a choice

with the opportunity to also choose alternative options. Whilst

counselling cannot offer precise one size fits all solutions,

it can raise awareness and with it choice of options and

actions available.

The World Health Organisation have, with the aid of Russ

Harris, introduced the resilience formula to refugee camps

throughout the world. For many people living in such camps,

the option of leaving is just not possible, but options two

or three are still available. People can be trapped in the

most awful conditions sometimes for their entire lives. It

is still possible though to initiate positive change, accept

what cannot be changed and live by values of how to treat

others, how to treat ourselves and live as meaningful a life

as possible despite all the restrictions faced and the painful

realities of day to day life. The alternative is option three. This

is the choice we all have.

If you would like to discuss any of the topics found

in this article with a counsellor, you can contact

the MSWA Counselling team on 9365 4811 to organise

an appointment.

Further reading: The Reality Slap by Russ Harris

MSWA BULLETIN WINTER 2017 | 13


IT’S WORTH

THE EFFORT

JENNIFER FOWLER

For 23 years I was a primary school teacher, dedicated and

devoted to my career. I loved my children and a significant

number of them remain in contact with me to this day which

indicates that many of them also loved me.

I contracted polio early in my childhood years and have lived

with disability in various forms for most of my life but largely

thanks to the support of my mother, I was able to do almost

everything I set out to do including teacher training. Being

different can sometimes be a challenge in itself, but we are

all different in some way - that’s what makes us individual,

interesting and loveable.

During 1989 and 1990 I began to experience fatigue in a new

kind of way. Believing it to be part of post-polio syndrome,

I fought against it with all the reserve I had. My emotional

well-being was a little shaky and I put that down to the fact

that my precious mother had died of cancer in 1988 at age

65. Coping with that was not my strong point. Then, at the

end of March in 1991, I had a cold. Simple enough really but

because I thought it might get worse and cause me to have

to take days off from school, I took myself off to my GP for a

quick fix. While I was with the GP I said to her that the vision

in my left eye was a bit fuzzy and asked her to check it out.

She peered into it, as they do, frowned, as they do, and said

she wanted me to see a specialist - that day. She made the

appointment. My sister took me to see Dr Tim Day.

I was admitted to hospital that day and went through numerous

tests. At the end of the week I had an MRI scan. Dr Day (how I

miss him) came to my room (on April Fool’s day!) at St John’s,

sat on my bed and told me the results of all the tests pointed

in one direction and that was that I had multiple sclerosis. I

didn’t know much about MS and treated his diagnosis with

some flippancy wanting to know when I would get better and

when could I go back to school.

I had some serious learning to do. By this time I had no vision

at all in my left eye and fatigue was a major problem. I had

begun to spasm at the most inconvenient times and I lost

control of my waterworks. Emotionally, I was a wreck.

At home I lived alone in the house of my dreams in the hills

on the east side of Perth. I had all that I needed and was

very happy. But my house was up on stumps and not at all

wheelchair friendly. Guess what I had to do first. Yes, I sold my

house in favour of a flat one down in the flats. I persevered in

my teaching but in a tandem arrangement in which I worked

four days and my partner worked one day. Then, my full time

teaching days were over.

Depression set in big time. I was finished. I was scrap heap

material. I was of no further use. I stayed that way, allowing

everyone to do everything for me until September of that year.

Then one day a colleague of mine visited me to deliver an

Education Department publication which he thought may

be of interest to me. It proved to be the catalyst of a huge

turn around in my attitude. There was a small advertisement

in the publication giving notice of a Master of Education

Degree course offered at summer school in the University

of Tasmania. I had a Diploma of Teaching and a Bachelor of

Education so was qualified to apply for this course which I

did. I was accepted and for the next three summers I went

to Tassie and studied like crazy. The fourth year I went over

to graduate as a Master of Education. Oh, what a feeling. My

sister and her husband came over to share the occasion with

me and there was much celebration. I thought this would lead

me into further gainful employment.

It didn’t.

My MS was still pretty angry and before long, I slipped back

into my own little pity party. By now I had lost the ability to

swallow properly and I had several bouts of being unable

to speak. I was no longer allowed to drive and did not have

permission to do relief teaching.

In 1998 I decided that I could, despite everything being against

me, drive again and teach again. The red tape abounded and

most of my friends thought I was setting myself up for failure.

It’s a long story, but by the end of the year I was driving again

and had written permission to do relief teaching in State

Government schools. Life began again. But it was slow. I was

not getting enough work and there is a wide gulf financially

between teaching and living on a pension.

14 | MSWA BULLETIN WINTER 2017


So, in 1999 with a courage that was not really my own, I

enrolled in the Bachelor of Social Science Course at Edith

Cowan University believing that if I couldn’t get a job in

education, I could get one in some aspect of human service.

On 21 April, 2002, I graduated and was awarded the degree

of Bachelor in Social Science. It had been a long haul.

I had a heart attack in August of 2001 followed by triple bypass

surgery in October. Having been discharged from that operation

I had three weeks to do three major assignments and complete

two major exams. That’s where the support network really came

into play. I was one very sick chick and one friend in particular

plastered the walls of my house with notes and I just sat and

studied those notes for many hours each day. Thanks Liz. The

exams came and went and I was not at all confident. I was back

in hospital when friend Liz rang and told me the results were

online and I had passed! The joy was immeasurable.

For 11 years I had a job and I felt like a real person again.

I worked for a specialised tutoring company on a part time

basis and it gave me more pleasure than I can describe. One

day I will get a job in some human service capacity and I know

I will have deserved it and I know I will do it well. I have proved

to myself that if something is worth fighting for it is worth

fighting hard for. I wanted this degree and I was going to get it

in my own time frame no matter what. It has been truly worth

the effort. It has been truly worth the stress. I have forged

some lifelong friendships with people who value me for who I

am and not because I have MS.

My final word is to people who have MS who may feel

that life is passing them by. Don’t let it. There is so much

one can do and every achievement, no matter how big

or small, gives so much pleasure. Don’t allow yourself to

have everything done for you. If you can do some things

for yourself then do them - don’t just sit there and let the

world pass you by. The world is full of opportunities for

everyone. Go for it.

NEWLY DIAGNOSED MEET AND GREET

SARAH LORRIMAR, MSWA PEER SUPPORT AND HEALTH EDUCATION COORDINATOR

Recently, the Newly Diagnosed Meet and Greet made a

welcome return. Our newly diagnosed Members were invited

to bring their friends and family for an informal opportunity

to meet with others in a similar situation. The group had a

wonderful turn out, with 18 people in attendance as well

as four MSWA staff including, Social Welfare Manager Lisa

Papas, Counsellor Cherry Chapman, Community Access

Nurse Rosie Hunt and myself.

The focus of the meet and greet was to create a safe place

for Members and their support persons, to listen to and

share experiences of their new lives with MS. The group

also provided a place to seek support from those with a lived

understanding and MSWA staff.

Feedback from attendees reported that the group was a way

for them to gain new information about MS, listen to other’s

experiences and to participate in the support system.

Our peer volunteer, Tom Lerner was in attendance to share

his personal story of being diagnosed with MS and his journey

so far. Tom spoke about how he has maintained his wellbeing

and a positive outlook on life with MS over the years.

With very positive feedback from the group, we hope to hold

another meet and greet soon.

Some feedback included:

“The evening exceeded my expectations, I learned more about

my partner and MS.”

“This was beyond my expectations! Definitely worthwhile.”

“A nice and relaxed environment. The meeting exceeded my

expectations.”

If you are interested in attending or would like to

provide any feedback, please phone Sarah Lorrimar on

9365 4858 or email Sarah.Lorrimar@mswa.org.au

MSWA BULLETIN WINTER 2017 | 15


OCCUPATIONAL THERAPY

IN PERSISTENT PAIN CARE

IAN CHEOK, MSWA OCCUPATIONAL THERAPIST

If you suffer from persistent pain, you are enduring more

than your fair share of obstacles. In addition to continual

discomfort, you may also experience a lot of frustration.

Persistent pain takes a major toll on your ability to do the

things that are important to you daily, such as cooking a

meal, having a shower, looking after your family, going to

work and going out with your friends. Left unaddressed, it

can cause you to lose your independence, leaving you little or

no alternative but to rely on others to do the things you used

to be able to do on your own.

Medical researchers now understand that various elements

are simultaneously at play in someone with persistent pain.

These elements can be physical (e.g. your body, issues in

your tissues, infection, inflammation), mental (e.g. beliefs,

fears, worries, anxieties) and environmental (e.g. heat/cold,

pressure, chemical exposure, pathogens). Researchers have

even discovered that our social and cultural environment can

affect how we experience and cope with pain. Pain is complex,

and to manage it successfully, we will have to understand its

many elements.

Occupational therapy is the use of purposeful activities

to help people improve their function and independence.

Occupational Therapists (OTs) are qualified health professionals

who help people achieve good health and wellbeing using

specific activities. OTs have a detailed understanding of the

interrelationship between the complex systems of the human

body and the external environment. This is helpful when

dealing with persistent pain.

OTs can help people cope with and manage their pain, so

they can continue to carry out the activities most important

to them. For instance, some activities can stimulate pain,

especially if they require more effort or range of motion than

you have available. OTs can help to find strategies to make the

activity less taxing, or find ways to modify the environment

to make the activity more doable. As OTs are very familiar

with all kinds of adaptive devices, they may suggest a device

that will make the activity easier. Sometimes it’s also a

question of breaking down the activity into manageable bits,

with rest breaks in between, that will allow the activity to be

accomplished without triggering pain.

When you have persistent pain, you often experience a great

deal of fatigue because of constantly tolerating the pain,

difficulty sleeping, or being less active. OTs can suggest ways

of structuring your day to manage fatigue. Alternatively, they

may be able to suggest sleeping positions that will allow you

to get a better night’s rest. In addition, an OT may also be

able to help you find the right activities in your community

that meets your needs to overcome fatigue and feel more

refreshed. Helping you engage in such activities is also a

wonderful way to make sure your family and friends can

participate along with you.

Persistent pain also causes stress, which can affect your

emotional and mental wellbeing. OTs can show clients how to

redirect their pain so that it interferes less in their daily lives.

They may achieve this by teaching relaxation and visualisation

activities that will make it easier for you to cope with the

feelings of loss, anger and other emotional challenges of

dealing with pain every day.

Finally, there is still a lot of stigma associated with having

persistent pain. It’s an invisible disability and, as such, the

public may have difficulty understanding and empathising.

OTs pride themselves on their role as advocates. As such,

OTs usually have good knowledge of community resources as

well as an understanding of the way the healthcare system

works. An OT may be able to help you navigate the system

and find the right resource to help you. If you have a question

about how to get more support, you can talk to an OT to get

some clever ideas.

In addition to the MSWA Occupational Therapy team, the

MSWA Counselling team also offer mindfulness meditation

workshops which can assist some people with managing

persistent pain.

If you are interested in finding out more about this

service please contact the MSWA Occupational Therapy

team on 9365 4854.

16 | MSWA BULLETIN WINTER 2017


PROTECT YOURSELF

AGAINST THE FLU

Protect yourselves and others

An annual flu vaccination is recommended as the first step

in protection against the flu. It reduces the chances of both

catching and transmitting the flu. This is especially important

for those at risk of complications arising from influenza and

those in close contact with at risk people.

Influenza, also known as the flu, is highly contagious and

spread through coughing or sneezing virus droplets into the

air. Others then breathe them in and become infected. It’s

important to remember that touching contaminated surfaces

(including hands) and then touching your mouth, nose or eyes

can also lead to infection.

You can minimise the spread of the virus during flu season

by practicing good household and personal hygiene, avoiding

close contact with others if you or they are ill, and covering

your mouth and nose when coughing or sneezing.

The bad news

• Flu viruses can survive an hour or more in enclosed

environments, meaning contaminated respiratory secretions,

can be picked up even without someone coughing or

sneezing near us.

• Even before we show symptoms, we can be shedding the

flu viruses; infecting others around us.

• Flu viruses are characterised by constant evolution; this

means they can pose a new threat every year.

The good news – you can protect yourself and others

through good cough and sneeze etiquette including:

• turning away from others;

• covering your mouth and nose with a tissue or your sleeve;

• using tissues rather than a hankie;

• disposing of used tissues in the nearest bin; and

• washing your hands or using alcohol hand rub as soon as

possible afterwards.

Hand washing is the single most effective way of killing

the flu virus and limits the spread of the flu and other

respiratory infections.

Always wash your hands with soap and water or alcoholbased

product (gels, rinses, foams) that don’t require water:

• after coughing, sneezing or blowing your nose;

• after being in contact with someone who has a cold or flu;

• before touching your eyes, nose or mouth; and

• before preparing food and eating.

Stop the spread in your house

Flu viruses can survive for more than eight hours on hard

surfaces; you should regularly clean frequently touched

surfaces such as door handles and benches.

Flu viruses can be inactivated and removed with normal

household detergents. Keep personal items such as towels,

bedding and toothbrushes separate. Don’t share cutlery and

crockery, food or drinks.

Is it the flu or a cold?

Colds affect the nose, throat and upper airways, and common

symptoms include coughing, fever, sore throat, sneezing,

blocked or runny nose and general congestion. They are

caused by about 200 different viruses and there is no vaccine

for a cold.

Symptoms of a cold tend to be mild to moderately severe.

The flu is a viral infection affecting your nose, throat and

sometimes your lungs. Typical symptoms of flu include fever,

sore throat and muscle aches.

Both colds and flu can also lead to complications, such as

pneumonia, which can sometimes lead to death.

Check out the healthdirect website for more information:

healthdirect.gov.au/cold-or-flu-infographic

If you are feeling concerned about any symptoms

of a cold or flu then see your doctor or call an

after hours doctor.

If you would like to speak to a registered nurse, call

healthdirect on 1800 022 222, available 24 hours a day,

seven days a week.

MSWA BULLETIN WINTER 2017 | 17


THAT’S LIFE

WITH NARELLE

NARELLE TAYLOR

It has been 25 years almost to the day since I went to a

seminar for the newly diagnosed at MSWA in Wilson. To me

at the time, it could have just as easily been for the newly

condemned. I went anyway, with my family.

I was deep in denial so everything they told us seemed so

horrific. I recall my late husband Greg got up in the middle of

it and went to the races. I don’t blame him.

When Dr Alan Kermode addressed a large group of us, he

focussed on what the research had established so far. He was

kind without giving false hope. He spoke about the dedicated

work towards finding a cure.

I remember he said some research had found MS is more

common in areas farthest from the equator, such as in

Scotland, but virtually unheard of among the Inuit of the Arctic.

How often an Eskimo encounters a neurologist, I wondered.

Next, the people around me began to ask questions and share

anecdotes. Some of their stories were very moving and all

of them were sad. The indignity of the disabilities that MS

inflicts seemed to be a theme. I wanted to say something

positive so I stood (I could then), and told the seminar I did not

care how my disability appeared to others.

“I still have things to do,” I said. “I will keep doing them, even

if I have to drag my back legs.”

Everyone laughed and so did I. But I was actually serious, and

I still am.

I have had MS for such a long time now. I no longer wait around

for a miracle cure and instead get on with this business of

living my life. On and on. As John Lennon once sang, “Life is

what happens to you when you are busy making other plans”.

As it turns out, I have literally had to drag my legs sometimes,

most recently when I was stranded on my bed. It was just

on dawn and my powerchair was parked on the other side of

the bedroom. It was an especially busy time of the day at the

aged care facility where I live, and the conversation I already

had with my shower lady told me she considered it far too

early for me to get up.

I did not agree. After she left the room, I slid down the side

of my bed like a teenager escaping to a party without their

parents’ knowledge. I did my best impression of an SAS

soldier to pull myself across the carpet on my belly towards

my mobility device. I impressed myself. When I reached my

powerchair, I spent a good 40 minutes climbing up to sit on

it. Part way through this massive effort, I was grateful for

physiotherapy. I don’t suggest it was pretty though.

Triumphantly positioned in my powerchair, I moved my hand

to the throttle and smiled. Thunder Road. I drove into the

common area and looked smug. I think we’ve all got stories

like this.

All of us with MS are getting on with it every day. A decade

after I had been dealt what Greg used to so succinctly call

“the s…t cards” of MS, I went to another seminar for the

newly diagnosed, this time as a speaker. The people I saw

reminded me what a shock it all had been. A young woman

came up to me after I gave my “keep going” speech and said

she was relieved. She told me, “I figure that’s the way to do

it.”

Here I am getting on with it, and pragmatic about some of

the collateral damage. Last week I shattered a floor-to-ceiling

window with the footplate of my powerchair. I was unharmed,

and since MS made me do it, I was also not to blame. I did

feel bad but these things can happen when you need a 200kg

machine to move around a room.

The footplate has form. Last year it reduced a ceramic toilet

to a pile of shards. I also felt bad about this. Fortunately, the

staff at my aged care facility believe that my independence

is worth more than a Caroma toilet bowl or a sheet of glass.

They also get on with it and call a tradie.

18 | MSWA BULLETIN WINTER 2017


MEET

Ms CARER

Meet Ms Carer, a fit and active lady enjoying her retirement

years with a beloved partner. But, alas, her marriage is

somewhat of a triangular affair with the third party being MS.

Recently this interloper (MS) has not been content with playing

second fiddle and is trying to dominate the relationship.

Consequently Ms Carer feels overloaded with the work and

effort needed to maintain a loving and elegant lifestyle with

her partner of 40 years.

Ms Carer is reeling over the loss of free time with so much of

her day and night taken up with the tedious and often hard

tasks of caring. The greater emphasis now placed on her role

as carer also dulls her usually positive outlook and lessens

the time and energy for feelings of love and friendship. Her

rose coloured glasses are cracked and cloudy but true to

her personality she keeps them nearby, hoping they can

be repaired. And she also copes by making a practical

assessment of immediate needs and devises a plan of action.

Ms Carer is just waiting to let her hair down but for now she

has it tied up underneath her sponge hat, a hat so useful for

absorbing burdens and soaking up tears. The hat carries her

busy bee moniker and a useful bell now that she feels like she

is at everybody’s beck and call. Always enjoying fashion, Ms

Carer still tries to dress nicely with practical but stylish black

slacks and a colourful top.

Her amethyst necklace is worn because traditionally it was

thought to heal and keep the owner cool headed and it holds

other symbolic meanings dear to Ms Carer.

An added vest with useful pockets holds her dreams and

interests close to her heart as she does the more mundane

chores but more about the vest later.

Ms Carer is weighted down with her red bag chock full of

MS carer paraphernalia: a notebook full of medical notes,

prescription refills, various medications, printed instructions

from the chemist, a water bottle to ensure her spouse drinks

his two litres daily, tools to fix wheelchairs, catheter supplies,

cleaning products and a rock or two to signify the weight of

responsibility and workload – this is adjustable. Her arms and

hands seem to have grown oversize to cope with her load.

Ms Carer’s vest is worn in anticipation of the interests close

to her heart which seem to be a bit forgotten in the recent

workload of care. The busy bee pocket holds a sewing

machine for her much loved hobby time. The flower pocket

reminds her of her love of beauty and her childhood love of

picking every flower she saw! There is a pocket for love, the

attached key opens her heart. The star pocket looks empty

but it is full of pride at being a star at coping and managing

life’s dramas.

Ms Carer keeps checking her well-worn rose coloured

glasses because one day, just maybe, she will look

through them and detect a silver lining.

THE PRESENT

DR ANDREW E. ONG

Each of us has a bank which credits our account every

morning. However, if we do not draw or utilise this account

the credit cannot be either carried forward or accumulated,

but is lost forever.

This bank is called time. Each day we are credited with a

day’s worth of 86,400 seconds, but none can be carried over

to the next day. If we waste a second, it is lost forever. We

must therefore invest this time as best we can in maintaining

our health, happiness, peace of mind, and in trying to make

the world a better place to live in. This is the value of time, but

how do we spend it?

Time is the most valuable gift we have been given, but the

least appreciated until it is brought suddenly to our notice.

A student who has failed an exam all of a sudden knows the

value of a year wasted. Mothers of premature babies know

the value of a month. Politicians know the value of a week.

Lovers in a private romantic rendezvous know the value of

an hour. Miss a bus or train and you will know the value of

a minute. Witness an accident and you will realise the value

of a second. Perhaps ask an athlete about the value of a

millisecond?

Therefore, treasure every moment that you have to

spend. Ensure that a second spent counts for something,

for time, it is well said, “waits for no person”. Share a

moment with a friend, a lover or someone special.

Yesterday is history, tomorrow is a mystery, but today is

a special gift. That is why it is called ‘The Present’.

MSWA BULLETIN WINTER 2017 | 19


AULD ACQUAINTANCE,

NOT FORGOT

ROS HARMAN

I first bumped into Helen when I was seven months pregnant.

She was pregnant too, and we struck up a friendship

immediately, comparing notes about stretch marks and

morning sickness and other baby paraphernalia. This was

1991 and everything was exciting and new for me, as it was

my first (and only) pregnancy. It was Helen’s fourth, so she

had lots more experience in the natal arena.

We remained friends for a number of years. Our children played

together and Helen and I played together too, taking a break

from parenting duties occasionally to go clothes shopping or

see a film. I went to my first ever opera with Helen as she

was a passionate fan. MS was playing havoc in my life in

those years, like some nasty practical joker launching sudden

surprise attacks on me, with frequent and irregular relapses,

which usually left me unable to walk, and then gradual

remissions. Helen was a good friend to me, helping out with

my child and keeping me company throughout it all.

About four years into our friendship, Helen’s father was

diagnosed with Huntington’s Disease, a neurological condition

that affects movement, thinking and emotion. It is a genetic

condition so if your parent has it, you have a 50% chance of

inheriting it. There is no cure for Huntington’s Disease and

limited treatment. After genetic testing, Helen discovered that

she had the gene and from then on knew that sometime in

the next decade or two she would begin to have symptoms.

I lost contact with Helen after a few years when I moved house

to a distant suburb. I don’t know why I let the relationship

lapse – I was busy I suppose, and I let the little effort

required loom larger than it really was. Years passed, and I

often thought of her. I wondered how she was coping, and

how her family were dealing with Huntington’s, which must

surely have manifested itself by now. Then one day recently,

I discovered her on a social media site and we renewed our

contact. She and her husband had moved and now live only

10 minutes away from me, and I was invited for afternoon tea.

Meeting Helen again after so long was both lovely and sad.

She greeted me with a big hug and it felt great to be with her

again, but it was impossible to ignore the insidious effect of the

monster in her life. Her speech was affected, though I could

still understand her, and she made constant, uncontrollable

jerky movements with her arms and legs. Nevertheless, she

was still the same person that had been my friend before, and

we spent a wonderful couple of hours together sharing news

of the children and of our lives.

MSWA has for some years supported a handful of people with

conditions other than multiple sclerosis, but with the coming

of the NDIS has officially placed itself to offer services to

many neurological conditions. Meeting Helen again really put

a face to what that will mean. I feel so grateful that MSWA has

been there for me over the 29 years that I have lived with MS.

Having a neurological condition is no bowl of cherries and

there is no magic bullet for Huntington’s Disease or for MS.

There is help available though that makes life easier. I am

so glad that I could offer Helen some information about the

support that MSWA will be able to give her in the next few

years, and I know that it will really make a difference for

Helen and her family.

I am so glad that we are friends again.

20 | MSWA BULLETIN WINTER 2017


MINDFULNESS

MEDITATION

SARAH LORRIMAR,

MSWA PEER SUPPORT AND HEALTH EDUCATION COORDINATOR

What is mindfulness?

We spend so much time thinking about things from the past,

or worrying about what may happen in the future that we

often forget to appreciate the present moment. Mindfulness is

a practice which involves consciously bringing awareness to

our current experience. In mindfulness meditation, the aim is

not to change or control our thoughts and feelings but instead

observe them without judgment.

Being mindful allows us to be aware of our surroundings, pay

attention to what we’re doing and the things around us. How

many times have you walked into a room and forgotten why

you were there? Or checked your watch only to look back up

and forget the time? These are some examples of when we are

being mindless. When we are not being mindful, it’s difficult

for us to move away from the automatic and unhelpful ways

of thinking and responding that we’ve been conditioned to.

Mindfulness helps us separate ourselves from our reactions,

allowing us to have a more conscious awareness of how we

feel and what is around us.

Why practice mindfulness?

Practicing mindfulness helps us clear our minds so we can

become more aware of ourselves and our environment. By

slowing down our thoughts, we can better understand how

we feel and consequently this can help us manage things

such as illness.

Mindfulness is useful for a variety of reasons and has been

known to reduce stress, improve self-awareness as well

as enhance emotional intelligence. When we are not being

mindful, our vulnerability to stress and poor mental health is

increased. Mindfulness provides us with perspective, reducing

any tendencies to overthink and act with an emotional charge.

If we focus on present sensations and disengage from habitual

thoughts, then automatically we relax and can be brought out

of moments of stress and anxiety.

Mindfulness gives us an opportunity to understand and be

aware of our autopilot reaction, so that we can alter and

improve the way we think and feel about our lives.

Other benefits of mindfulness include:

• Being present

• Safe exploration of unpleasant thoughts

• Becoming aware of what you’re avoiding

• Being more connected to self and others

• Being less reactive to unpleasant experiences

• More calmness and peacefulness

• Understanding that everything changes

(e.g. thoughts and feelings)

• Developing self-compassion

Anyone can practice mindfulness and it’s available to us in

every moment. Although it seems like a simple concept, it is

not necessarily easy. For many of us, we have spent our lives

learning to shift our focus away from how we presently feel.

Mindfulness is a skill which takes time and practice.

Where can I practice mindfulness?

Our MSWA Counsellors run mindfulness meditation workshops

throughout the year. These workshops are for both beginners

and those wishing to deepen their practice. The sessions

include guided meditations and provide attendees with skills

for relaxation and mindfulness. Our classes aim to empower

people to respond more effectively to life challenges.

There are several sessions run throughout the year in

four locations – Rockingham, Armadale, Currambine and

Mirrabooka. Classes are held from 10am to 12pm and are

just a gold coin donation. For more information, please

contact Sarah Lorrimar at Sarah.Lorrimar@mswa.org.au

or on 9365 4858.

References

perthmeditationcentre.com.au

beyondblue.com.au

McKenzie, S., and Hassed, C. (2012). Mindfulness for Life.

Wollombi, NSW: Exisle Publishing.

MSWA BULLETIN WINTER 2017 | 21


MSWA VOLUNTEERING

NEWS

DAWN BURKE, MSWA COORDINATOR OF VOLUNTEERS

Hello again and welcome to the winter edition of the Bulletin.

I can’t believe we are halfway through the year and so much

has happened - as always is the case at MSWA.

The first part of my year is spent focussing on National

Volunteers Week and organising a beautiful luncheon to invite

our volunteers along to. What a great way for us to celebrate

together and to say, “Thank you for all you do.” This luncheon

is MSWA’s way of acknowledging their efforts and the time

they give to us, and to let them know how appreciated

and valued they all are to all MSWA staff. Without you, our

volunteers, we wouldn’t be able to do all that we do for our

Members. I’d like all volunteers to take a moment and pat

yourselves on the back, and say well done. I would also like to

take this opportunity to send out my own personal heartfelt

thanks to you all.

The luncheon was a beautiful affair, and again held at

Burswood on Swan. As per previous years we had the most

amazing food and none of us went home hungry. I’m sure

some of us felt we could roll home, we felt so full. If you didn’t

try the hummus you missed out on a mouth-watering treat. I

have tried many but this was without a doubt the best I have

ever tasted. Many of the volunteers thought the same and

even had the chef write out the recipe, which he happily did.

I took a photo of the recipe he gave the volunteers. Aren’t

mobile phones convenient little devices at times? The staff at

Burswood on Swan are the most helpful staff I have ever come

across. They make the organising of this event incredibly easy

and on the day, are happy to lend a hand in any way to make

it run as smoothly as possible.

The view from the venue is just glorious, sitting right on the

river overlooking Perth. You couldn’t ask for more, but more

we got! We had a couple of seagulls floating around, who

thought they would come inside every now and then to have

a chat. There was another bird, which I believe is the Great

Egret, strutting its stuff in all its finery for all to see and a

friendly spider sitting in a tea cup hoping to enjoy the soothing

aroma of a hot cup of tea. The table centrepieces were again

designed and made by two of our volunteers, Lesley Pitt and

Lynn Hoonhout. They looked fantastic - I would like to say

thank you for creating such lovely centrepieces. They gave

the tables such a personal touch. The feedback from the

luncheon is always fantastic and everyone comments on how

much they enjoy the venue. Hopefully we can go there again

next year.

During the Volunteer Luncheon our President, George

Pampacos, brought forward a few volunteers that were

nominated by their Department Supervisors for a Certificate

of Appreciation Award. The recipients for 2017 were Pam

Stupples, Callum Begg, Priya Rath, Lesley Pitt, Robert

York, Lynn Hoonhout, Bee Lean Kim, and Rosalind Beatty.

Congratulations to you all, thank you for your ongoing efforts

and I’m sure you will be with us for many more years to come.

I have been fortunate to attend two camps already this year.

The first was a last-minute inclusion for me in April. I attended

the Carers Retreat on Rottnest and took a volunteer, Rosalind,

to assist myself and one of the counsellors, Karen Brown

throughout the three days. The weather was amazing and

the view from the unit I stayed in was second to none. The

carers who were fortunate to share a unit with Rosalind were

very spoilt and enjoyed being fussed after. It is important for

our carers to have rest from their caring role with their loved

ones. To have someone available to care and nurture them

for a short period is worth its weight in gold. It is extremely

important to care for the carer, as the role can be extremely

demanding and sometimes thankless. The carers had a great

time and enjoyed soaking up the sun rays.

22 | MSWA BULLETIN WINTER 2017


In May, I attended the first Members camp for 2017. As usual

it was in Guilderton, or more affectionately known as Moore

River. The weather was mixed with rain, clouds and sun, but

the weather gods were doing their job on the day of the river

cruise and our BBQ lunch and kept the sun out while keeping

the rain and clouds away. This was the biggest camp I have

attended in my years here at MSWA and it was great to see

quite a few new Members come along.

We were very fortunate to have three volunteers attend this

camp, Rosalind, Jacqui and Mike. You have no idea how hard

these volunteers worked over the three days. The Member

camps are so much more involved than the Carers Retreat,

and require a much more hands on approach. The volunteers,

as well as staff, most of whom volunteer outside of their

regular work hours on camp, must load and unload equipment

and belongings, drive to the venue, help set up and pack up

Members beds, constantly wash and dry dishes (it is such a

food fest), help in the kitchen, help with activities and provide

general support to Members throughout the day. This camp

would not run as well as it does or be as enjoyable as it is

without the volunteers.

Our volunteers give the staff the space to organise activities

for the Members. This year we focused on Warrior games

and groups were formed, shields were made and chants

were roared. As always, we had many laughs, rekindled old

friendships while making some new ones, shared stories and

generally had a good time. Thank you to all my volunteers and

to all the staff who attended. For me to make a difference in

others’ lives is important, and these camps make a difference

to many, and for that I am truly grateful.

When I started in this position, over four years ago, Member

Services volunteer numbers were fluctuating around

100-105. The volunteer numbers have since grown in this

area and numbers are now fluctuating between 125-130.

This is amazing and shows that MSWA is a great organisation

for volunteering.

We are also very fortunate to have many long-term volunteers.

MSWA’s Events team are always looking for volunteers for

the MSWA events that are held throughout the year. Trish

Watson, the Events Coordinator is at the helm of recruiting

volunteers for upcoming events, so if you have a spare few

hours throughout the year, or you know someone who would

like to assist with the events, pass on Trish’s contact number

6454 3116.

Once again it has been a pleasure talking with you all. I

look forward to catching up with you whether it is around

the hallways at Wilson, out and about in the community or

by phone and email. Please do not hesitate to contact me to

discuss anything or just to say hi. My door is always open, if

you can find me, and I’m happy to have a chat. Welcome to

all our new volunteers, welcome into the MSWA family, and I

look forward in getting to know you better.

Until next time, it’s bye for now.

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MSWA BULLETIN WINTER 2017 | 23


COMING TO GRIPS

WITH MS

TERRY YOUNG

I was diagnosed with MS in December of 2000. I had moved

back to Perth a few years earlier with my wife at the time

and two children. We had recently bought a house and I

had just taken on the ownership of a new marine trimming

factory. The business was involved in boat upholstery and it

was wonderful, creative work and I felt I could really express

myself. However, I was working seven days a week and was

experiencing some relationship issues – so I was under a lot

of stress and I didn’t allow myself the time to rest.

I first noticed my symptoms at work, leaning on a work bench

feeling overcome with fatigue and having blurred vision. My

running was affected and one night lying in bed, I noticed that

one of my legs was a completely different temperature to the

other. It took three months of going and back and forth with

my GP to finally come to a diagnosis.

Initially, I had no idea about MS apart from my daughter having

participated in the MS Readathon. It was a strange experience

after I had been diagnosed. I didn’t understand what MS was

and when I came to MSWA to speak to one of the nurses,

I saw people in wheelchairs and that was confronting. The

thought of being in a wheelchair was the scariest expectation

I had. I refused to believe that it could be me. It took me two

years before I accepted the disability pension, not accepting

of the word disability. I think when you’re initially diagnosed

and you know nothing about MS, particularly 17 years ago

when there wasn’t much available, you are not given much

hope. Thankfully, I have since learnt that there is a lot you can

do to feel better and I can do things to help myself.

I continued to drive after my diagnosis, after a while I used a

car with hand controls as I had to leave my foot off the brake.

I used a walker to help me do things and then I began to use

a wheelchair to help me when travelling long distances and

for activities like shopping. In 2010, I was in a car accident

which left me permanently in a wheelchair and it was after

this when things became harder. I couldn’t use the sewing

machine for work anymore and my body felt weaker. Even

though life has changed now that I’m in a wheelchair, I have

not lost my passion for life. As I’m sure we all know, life can

deal us many and varied hands, and it is how we deal with

that which makes the difference.

My MS is stable at the moment. Having progressive MS, I

know there is a slight decline. My writing is not very good

anymore and my arms can become very fatigued. Fatigue

can affect me out of the blue sometimes, often it’s due to

changes in the weather. My legs and my muscles is where I

feel pain. I also have some nerve issues, like a little electrical

shock when I’m in the pool. I try not to focus on this though.

Working with different people has helped me understand why

these things are happening to my body and has helped me to

manage these changes. Listen to your physiotherapists and

your OTs - pick their brains because you need them.

Before I was diagnosed, I wasn’t eating healthy and I was

smoking. These days I have quit smoking, my diet has

improved immensely and I am regularly exercising. I go

swimming at my local pool and I have an exercise program at

home with assistance from a physiotherapist. Each morning

I wake up at 5am and meditate for half an hour before my

morning coffee. Meditating allows me to get a sense of how

my body feels - I notice where my body is holding tension

and which muscles are tight. Meditation also allows me to

be mindful which I find helpful. Of course, I’m tired at the

end of the day but these activities make me feel like my days

are fulfilled. My relationships with people have helped me

so much. Social connection is extremely valuable for your

wellness. I’m conscious of positive self-talk and I value my

independence, so I do as much as possible on my own.

In the past few years, I have come to realise all the services

MSWA offers. I have met some great friends through MSWA

and have accessed counselling, occupational therapy,

physiotherapy and nursing services for about 10 years now.

About a year ago, I struggled to get in and out of bed. I found

it hard to reposition myself and get comfortable. It was then I

learnt that MSWA offers services which could help me out at

home. MSWA care support workers now visit during the week

to help me get ready for the day and into bed. I have always

felt that acknowledging you need help does not take away

from yourself or make you more disabled – it helps make you

more independent.

I don’t deny that I have MS. It makes things tough but I have

accepted that I have it and try not to focus on the negative.

Having MS has opened a lot of possibilities for me. I have

made new friendships, recognised the passions in my life and

its inspired me to help others.

My advice to others is to be kind to yourself. It’s important

to recognise that there are challenges and it will take

time to do things, but you will get it done.

24 | MSWA BULLETIN WINTER 2017


SOUTH WEST

Regional Round Up

The latest

news from

the South

West

BUNBURY OUTREACH NEWS

SUZY BARKER

A big warm “hello” from all the Members and staff at Bunbury

Outreach Group, situated inside the fabulous new Bunbury

Community and Health Services Hub.

We are all ecstatic with our wonderfully spacious Outreach

areas, atrium one and two (when we draw the room-divider),

enabling us to comfortably move around and enjoy our social

gatherings every Wednesday. We now can set up tables to

create craft activities, play board and floor games and do

the word quizzes on the shiny new white board! We have

completed our first art activity, a colourfully painted ‘Outreach’

plaque to be proudly mounted on the wall in our social area.

In early April we held our first big event – a Hawaii Vacation

themed morning tea! It was a hoot to say the least with

everyone getting into the spirit of being colourfully dressed.

We all attempted a quite comical hula dance around the

room before enjoying a morning tea of Hawaiian pizza, fruit

salad and tropical punch. We had such a great morning with

many laughs, so thanks to Wilson Outreach for the loan of the

Hawaiian box of goodies.

We are now planning our next holiday adventure to Paris,

France in mid-July! We are aiming to recreate a typical

Parisienne café ambience, with rustic French decorations,

music and memorabilia of famous icons and places in Paris.

We even may dare to attempt the Can Can dance! Our project

now is to create our ‘French Connection’ box with handmade

costumes, crafty flags and all things French so we can pass

the box onto the other outreach groups. So until next time,

watch this space, Viva La France!

MSWA BULLETIN WINTER 2017 | 25


ALBANY OUTREACH NEWS

CAROLINE CLARKE-SMITH, MSWA RESOURCE COORDINATOR

In May we enjoyed a lovely morning tea with 10 of our Members

at The Three Anchors restaurant at Middleton Beach. It was a

great social outing and we look forward to the next one.

Our next outing will be a lunch on Wednesday 19 July, at the

Emu Point Café. We look forward to seeing everyone there.

Please contact us to register your interest.

Physiotherapy exercise classes commenced May 31 and ran

on Wednesdays for six weeks. These classes may continue

depending on interest. For more information or to register

your interest, please contact our office.

We enjoyed a visit from MSWA Senior Counsellor Leonie

Wellington, Social Welfare Officer Gerald O’Sullivan and

Senior Nurse Nimisha Baird. It was great to have them here

and we received some input from their fields.

The MSWA Albany Swim on March 18 was a great success.

Thank you to all those who contributed. Your time and effort

assisted in raising more than $20,000.

Please be sure we have the correct contact details for you

so we can keep you up to date. To update your details or

for any other enquiries please contact us on 9377 7800.

WILSON OUTREACH NEWS

NICOLA RYAN, MSWA SENIOR OUTREACH COORDINATOR

Our first half of the year at Wilson Outreach has been

extremely busy and a whole lot of fun! Members often say

when they are here that “the place just doesn’t stop”. That’s

of course what we like to hear as ultimately everything we do

is for the good of our Members!

Many have enjoyed going on outings in the community and

with the beautiful weather we have had in the first half of

the year this was always going to be a winner! Sculptures

by the Sea, a yearly event at Cottesloe beach, proved to be

very popular amongst our Members with more going this year

than ever.

For the first time a visit was arranged to the Scented Garden

in South Perth. Our Members from the ‘Embrace the Shake’

group thoroughly enjoyed their time wandering around the

beauty on the foreshore and have come back with lots of

ideas to have something similar reproduced here, so watch

this space!

Movies are always a popular outing as many Members find

it difficult to get there on their own. With the buses that we

have on hand at Outreach this is easily arranged and after the

movie there’s always time to get back to the centre for lunch!

We are very lucky here in Perth to have such fantastic parks

available literally on our doorstep at Wilson so a favourite

outing for both Members and staff alike is a stroll along the

Shelley foreshore and the beautiful Kent Street Weir!

From outside outings to inside ones, we are again travelling

the world and so far, this year have been to Italy and

Las Vegas. Just like our previous two years of travel we

manage to bring the places alive in the atrium where our

Outreach meets.

From different props, many pictures, great music, items

brought in for show and our awesome staff arranging activities

we soon find ourselves feeling that we are right there in the

moment! Lunches while we travel are also an important part

of our journey and we have had some amazing meals with

all the fantastic aromas throughout the building helping with

the atmosphere!

In the times in between, when we are not travelling inside or

outside, we always have activities that Members can join in on

as well as some great places to sit and chat with others. Our

volunteer pianists are here three days per week entertaining

us so really there is never a dull moment! Members often

pass through after other appointments and everyone is more

than welcome to stay for a cuppa and chat.

Outreach is a place to do exactly that! So please come

and join us.

26 | MSWA BULLETIN WINTER 2017


GERALDTON TRIP

There were many activities happening as part of this year’s

annual visit to Geraldton!

Visiting MSWA staff included Senior Community Access

Nurse Jill Crombie, Social Welfare Officer June Brown, and

Physiotherapy Manager Dave Hathorn. Together, they made

visits to Members at home and attended a local hospital,

nursing home and the Disability Service Commission to

update them on the recent growth of MSWA. They also met

with the local MSWA Physiotherapists and masseur and joined

the Geraldton peer support group which meets each month.

On the first day of their three day visit, a Bunnings sausage

sizzle fundraiser was organised by the wonderful Members in

Geraldton which raised an impressive $800!

The visit was a great way to connect with local Members

and staff. MSWA are looking forward to next year’s visit

– which thanks to the suggestion of one of our Members,

could involve a fishing expedition!

MSWA staff and Members at the Bunnings fundraiser.

NORTHAM MORNING TEA

On June 1, a group of MSWA Members from Northam

and surrounds came together for a peer morning

tea at the Bridgeley Community Centre. With people

travelling from areas such as Bolgart and Toodyay,

there was a great turnout of 15 people! This included

people living with MS, their support persons and two

staff members from Northam Hospital.

Joining the group were MSWA staff members,

Peer Support and Health Education Coordinator

Sarah Lorrimar, Counsellor Cherry Chapman, NDIS

Client Relationship Coordinator Pranjal Pawar and

MS Nurse Dee Menzies.

Following introductions, the group quickly warmed to

each other and the session was spent sharing stories

of life with MS as well as discussion on topics such

as medication, neurologists, accessing supports,

wellness and the NDIS. With such a successful first

meeting, the group has already put in the motions to

continue a regular meeting in Northam!

MSWA BULLETIN WINTER 2017 | 27


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