The Official Magazine of the MS Society of WA | mswa.org · The Official Magazine of the MS Society of WA | mswa.org.au Summer 2014 Mental health is not a dirty word! The importance

bulletinThe Of f ic ia l Magaz ine o f the MS Soc ie ty o f WA | mswa.org .au

Summer 2014Mental health is not a dirty word!

The importance of staying hydrated

Sleep in the heat

Setting up for success – take charge

MSWA Members, Liz & Joanne, with Joanne’s son Daniel after all took part in Stadium Stair Race.

Summer 2014 The MS Society of Western Australia2

The Multiple Sclerosis Society of WA (Inc.)Telephone (08) 9365 4888Fax (08) 9451 4453Freecall 1800 287 367

Member Services DirectoryGENERAL MANAGER, MEMBER SERVICESSue Shapland 9365 4840

WANGARA OFFICE Unit 5/2 Prindiville Drive 9408 0772 or 9409 8920

BUNBURY OFFICE 9 Ramsay Street 9791 2472

OUTREACH GROUPS Wilson Outreach (Mon-Thurs): 9365 4830Beechboro Lodge (Mon, Fri): 9377 7800Southside Outreach (Fri): 9592 9202Albany Outreach (Fri): 9841 6651

MARGARET DOODY RESPITE HOUSE Manager, Chris Rush: 9385 9574

FERN RIVER Manager, Liz Stewart: 9356 2747

HAMILTON HILL Manager, Jayne O’Sullivan: 9331 5780

TREENDALE GARDENS Manager, Linda Kidd: 9725 9209

INDIVIDUAL OPTIONS Manager Community Care ProgramsGail Palmer: 9365 4851

Contact UsIf you would like to comment on anything you read in this Bulletin please email [email protected] or write to MSWA, Locked Bag 2, Bentley DC WA 6983

The Bulletin can also be viewed at mswa.org.au/bulletin

Editorial Committee

Greg Brotherson (Editor), Marcus Stafford (CEO), David Bugden, Sue Shapland, Sandra Wallace, Narelle Taylor, Leonie Wellington, Bhavna Jagtiani, Taryn Mokrzycki and Dawn Burke. The Editor welcomes unsolicited submissions. All articles are subject to a reviewing process. The views expressed are those of the Authors and do not necessarily reflect the view of the Society’s staff, advisors, Directors or officers.

NURSING Our nursing team is usually the first point of contact, after the neurologist,for anyone diagnosed with multiple sclerosis. We’re committed to providing holistic supportso you have a greater understanding of what to expect from your condition. Manager: Lou Hatter on 9365 4809Hospital Liaison Nurse (S.C.G.H.): 9346 3333Community Nurses: 9365 4812, 9365 4838, 9365 4870, 9387 4846 or 9365 4888

PHYSIOTHERAPY Physiotherapy aims to provide treatment interventions to develop andmaintain mobility and function. Our Physiotherapists are experts in movement and function,and work in partnership with Members to attain the highest possible level of independence.Manager: Marilyn Sylvester on 9365 4818Southside: Fridays on 9592 9202

OCCUPATIONAL THERAPY Occupational therapists work with Members, and clients,to enable them to continue their work and other interests for as long as possible, where theymay otherwise have been limited by their condition.Manager: Sandra Wallace on 9365 4804 Heather Mearns on 9365 4894, Robyn Loxley (Assistive Technology) on 9365 4866, Ilissa Liew on 9365 4832 and Verity Defries on 9365 4833

COUNSELLING Some people need support to deal with the news that they have MS,and the challenges that may present over time. Our qualified counsellors provide a safespace for you to explore your concerns, in a safe and confidential environment.Manager: Lisa Papas on 9365 4836Support Counsellors: 9365 4808 or 9365 4811 Peer Support Program: 9365 4808Welfare Officers & Funding Locators: 9365 4889 or 9365 4835

CAMPS & RECREATIONMSWA provides separate recreation camps for Members, carers, and families, primarilyfunded by Lotterywest, and for a nominal cost to participants. These camps provide abreak from daily routines, and strengthen friendships and support networks.Coordinator for Camps & Recreation: 9365 4843 In-home care: 9416 4505

Letter from the Editor 3-5From the desk of the CEO 6MSWA Christmas/New Year Closure 2014 6A message from the General Manager – Member Services 7Round-up of research and other items of interest 8-9Mental health is not a dirty word! 10Colour me karma 11Mindfulness book reviews 11The importance of staying hydrated 12Keeping cooler in summer 12How do bladder and bowel problems impact quality of life in MS? 13Check out Marcus’s blog 13Sleep in the heat 14Upcoming Programs 15A brief report from the Sexual Dysfunction Masterclass, London 16Remembering Berlin 17

Clarifying the meaning of “feeling sorry for yourself”: a case for healthy nostalgia 18That’s life with Narelle 19A New Year’s Cruise (Part Two) 20Five action steps to a better self-Image 21Setting up for success – take charge 22Farewell from Reception 23Navigating the seas 23Remembering Colin Whitton 23Fundraising round-up 24Volunteering news 25MSWA Camps 25Onwards and upwards 26Treendale gets gift of art 26South Metropolitan Health Service Update 26Wilson Outreach News 27Southside Outreach News 27Bunbury Outreach Group News 27

Inside | Summer 2014

The MS Society of Western Australia Summer 2014 3

Letter from the EditorDr Greg Brotherson

MS Society of WA (INC.) records another best ever result for the financial year to 30 June 2014.

The Society held the Annual General Meeting (AGM) at Wilson headquarters on October 25. The meeting was well attended, with the Society’s auditor and lawyers in attendance. The Society’s President, Mr George Pampacos, opened proceedings by welcoming everyone, acknowledging his volunteer Board of Directors, the CEO, Mr Marcus Stafford and senior managers to the “review of another successful year for the MS Society here in WA.”

Mr Pampacos drew attention to the material distributed “in your packs you will find included today’s agenda, the Society’s Annual Report, the Audited Financial Statement as at 30 June 2014 and copies of questions on notice”. Mr Pampacos went on to say that although item 7 on the Agenda dealt with questions on notice, most of the questions would be addressed within the various presentations to follow. Questions which remained unanswered were to be dealt with in turn and according to the Agenda. Mr Pampacos added that at the conclusion of formal business, there would be a further opportunity to speak informally with Board Members and members of the Senior Management Team over morning tea.

Having moved, seconded and passed the minutes of the previous AGM, Mr Pampacos presented his first report as President of the Society.

Mr Pampacos said: “It is a great honour to announce that all facets of our business segments have had a successful year, achieving all our targets in relation to fundraising, services provided to Members and our contribution to research into finding the cause and a cure for multiple sclerosis.”

Mr Pampacos announced that on the back of two strong MS Mega Home Lottery campaigns (financially the most successful yet), the Society was able to contribute a record-breaking $1.25 million to research, an increase in Member service hours by ten percent and a total of 515,347 service hours to people living with multiple sclerosis and other neurological conditions.

Mr Pampacos also pointed out that during the year, the MS Society of South Australia & Northern Territory (MSSANT) had fallen upon difficult times. “In recognising our strength and the leadership role we have taken on throughout Australia, we were asked to assist them to re-model their structure, service provision and fundraising activities in exchange for a management fee,” he said. He then thanked our staff for taking on the extra responsibility of assisting people with multiple sclerosis in South Australia and the Northern Territory.

Mr Pampacos closed his report by noting that the Society was also “excited” by the opportunities presented by the introduction of the National Disability Insurance Scheme (NDIS), and the support offered by the State Government Minister for Disability, the Hon. Helen Morton.

Before calling on the Society’s Treasurer, Mr Peter Wright, and our independent auditor to deliver their reports, Mr Pampacos confirmed that the Society’s financial statements reflect the Australian Accounting Standards and the requirements of the WA Department of Commerce and Australian Not-for-Profit Commission. Our financial statements are also available on our website, or as in previous years, will be sent by post upon request.

The Society’s Auditor, Mr Simon Cubitt, a senior partner with RSM Bird Cameron, confirmed that the Society’s financial statements were in order, and that Board Members were volunteers who had received no remuneration for their time. Mr Cubitt called for questions, and when no person responded, the Society’s Treasurer, Mr Peter Wright, presented his report.

Mr Wright stated that the Society was in a fortunate position as of 30 June 2014, posting a profit of $812,313. A total income of $33,204,172 was achieved, of which $18,284,842 was raised by the Society’s Marketing & Fundraising Department. Expenditure on services to Members has increased by $2,682,782 (a sixteen percent increase), including a record research contribution of $1,250,000. The Society’s Balance Sheet reflected a very healthy increase of 8% in net assets to $17,639,572.

“You are encouraged to read the Society’s annual Audited Financial Statements and, in particular, the statement of comprehensive income. This provides a detailed break-down of income, costs and net contribution by function.” Peter Wright

Mr Marcus Stafford, the Society’s CEO, then presented his report by pointing out that it was not all that long ago, less than a decade in fact, that the organisation was small but energetic with big plans for the future. The Society got by with only government funding and a small fundraising effort to help people with multiple sclerosis in the best possible way. Today, the Society’s turnover has risen from $6 million to in excess of $30 million, with 460 staff working in eleven locations throughout the state.

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Mr Stafford said that the Society is now a “broad church” that accommodates a variety of people with multiple sclerosis, from those who are newly diagnosed or low care (1106 people), to people who are medium care (850 people), and those who are severely neurologically disabled (250 people). But, these numbers in no way tell of the effect multiple sclerosis also has on their families, friends and carers. In addition, the Society also provides services to people with over thirty other neurological conditions.

This year’s results include a number of records. Mr Stafford pointed out that while it was pleasing to report that we have delivered a record contribution to research and a record number, volume, breadth and range of services to Members, this also means real things to real people — things like specialty neurological, community and high-end nursing, occupational therapy, physiotherapy, counselling, in-home support, outreach groups, respite, day-respite, camps for carers, for Members and for their children. We have also introduced new innovative services such as educational and information seminars, additional circuit exercise classes, extra support and visits to regional areas.

“A record number of Member Services. A record number of services to people with neurological conditions other than multiple sclerosis. A record in service quality. A record contribution to research. A record spread of Member locations. A record gross revenue. A record gross assets. A record net assets. This means real things to real people.” Marcus Stafford

Mr Stafford concluded that we are well positioned for the NDIS. The Society’s revenue base is strong, our cost structure is well managed and we pride ourselves on the professionalism of our staff. Future developments include incorporating the building of further infrastructure in the Perth metropolitan and rural areas, another high-support accommodation development, future growth in both Member and Client Services, and finally cementing our leadership position within research.

ITEM 7: BUSINESS ON NOTICE. Mr David Jones, an elected Board Member and a lawyer with the Crown Law Department, then spoke of the Board’s decision to withdraw the proposed changes to the Society’s Constitution. Legislative changes being put forward in State Parliament with regard to the provision of services and the NDIS will provide a three year window of opportunity for the Society to adapt itself to this new legislation. The Society

lawyers now agree, Mr Jones went on to say, that it is now more prudent to wait until 2015, following the progress of legislation, before making the proposed changes.

ITEM 8: CONFIRMATION OF THE ELECTION OF PERSONS TO THE BOARD OF DIRECTORS. Mr Pampacos announced that as there were two positions available and nominations were received from Ros Harman and Horst Bemmerl (both retiring Directors), he was pleased to announce that both Ros Harman and Horst Bemmerl were re-elected to the Board of Directors of the Society.

Members questions:Mr Pampacos stated that as had been previously agreed upon, questions received in advance were provided in the packs, most of which had already been covered by the Treasurer and the CEO when delivering their reports, Mr Pampacos then addressed the remaining questions together with some clarifying remarks.

Comments with regard to the Board MSWA Directors are voluntary men and women who do not receive any remuneration for their time and contribution to the Association. The majority of the Board is comprised of elected members living with multiple sclerosis and six non-elected members from the community. These non-elected members all come from a range of backgrounds, including financial planning, accounting, entrepreneurship, medical and government. The elected members are people living with multiple sclerosis every day and were voted onto the Board by our membership – people with multiple sclerosis living in Western Australia. The Board guides the Association to cater for people living with multiple sclerosis in WA, all within a wide spectrum and different stages of the disease.

The first question was based around Advertising and Fundraising. To ensure that the Society’s actions were correct and lawful, we felt it important to seek legal advice. It has been confirmed that MSWA is not subject to Article 8 of the United Nations Conventions. However, the Society recognises the Advertising Standards Bureau has adopted similar policies and we confirm our intention is to comply with those requirements.

As part of our ongoing management and as a matter of course, all aspects of the Society’s operating model were reviewed. This included a review of the Society’s branding campaign for the next twelve months. As the CEO previously stated to the broader membership, there is no intention of running advertisements that carry the same dark and frightening tones that have been widely reported. Instead, people with multiple sclerosis will be allowed to tell their stories. Some of these people will be newly diagnosed and low support people, some will have been living with multiple sclerosis for a number of years and others will be experiencing high levels of disability. The intention is to offer a balanced campaign aiming to educate the public on the broad spectrum of people living with MS and what the condition is.

Comments with regard to our financialsThrough its activities, the Society receives revenue from a mix of sources including government grants, donations and profit from fundraising events.

In relation to research, the Society is unable to contribute to research as a percentage of gross revenue, rather the contribution comes from our fundraising activities. The reason being that gross revenue includes funding from the State

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Government that is attached to audited service agreements and must be used for specific purposes.

It is a Board decision to balance between providing care and support, topping up and in many cases providing funding for otherwise unfunded healthcare services, residential and respite facilities, and also the research effort and funding in accordance with our mission of “Seeking the cure, providing the care”.Comment has been made in relation to KPIs and the balanced scorecard. Monthly KPIs, Benchmarks and the Balanced Scorecard are already prepared for internal management purposes and are reviewed monthly by the Board and the CEO. In addition, this is used for monthly reporting to senior management. Some of this information such as Member services hours, activities and the interim financial position are provided to Members at the quarterly CEO updates held at the outreach centres.Comments with regard to other reports regularly submitted: • Six monthly reporting to the Health Department of WA in

accordance with the Society’s agreement which includes statistics, narrative and an annual financial acquittal.

• Annual reporting to the Disability Services Committee in accordance with our agreement.

• Annual Financial Statements, independently audited and lodged with the Not For Profit Commission.

Comments with regard to Members’ engagement through several avenues, namely:• Representation on Board – seven Members democratically

elected by the membership living with MS with a range of MS symptoms and disabilities.

• Member Services Committee.• Annual Member Services Survey.• Members attending Outreach Groups through Advisory

Group Committees and through the CEO presentations with question and answers.

• Other methods include, specific feedback surveys used following educational forums, surveys specific to service types (e.g. physiotherapy), and other targeted surveys.

• In December 2012 there was a Members Information Needs Survey carried out.

The final questions or comments relating to Member Services: 1. How does MSWA create Member awareness and

encouragement of items that Members would be eligible for under the Chronic Disease Management plan?

This information is provided through the Health Team, the Bulletin magazine, e-newsletter and other means including GPs themselves and Medicare Locals.

Whilst the Chronic Disease Management process allows for five Medicare rebateable allied health services each year, these are easily used up if you have a multi-disciplinary health team leaving a significant gap. Many of our Members are pensioners and five visits are insufficient to even partially meet their needs.2. Offering information on other services outside of the MSWA

that Members may be eligible for and determination of particular services that should be directed and serviced by a GP rather than offered by the MSWA.

MSWA services are tailored to more multiple sclerosis specific issues rather than just generic information. 3. The creation of pooled resource sharing amongst the

nationwide MS Societies.The Society does share some information resources nationally but as independent societies with different structures and models, the aim is to meet state memberships first. The past president of our Society, Mr David Barnes AM, is now the President of MS Australia.

Mr Pampacos further commented on participation and input, together with the formal structures that underpin the Society. He added that an organisation like the MS Society, with such an important charter for all people with multiple sclerosis in WA, which has over 450 staff and a sizeable financial responsibility must have sound and strong processes in place to safeguard the Society. Those processes, checks and balances include, amongst others:• The Corporate Governance Committee (A committee of the Board)• The Audit and Risk Committee (A committee of the Board) • The Member Services Committee (A committee of the Board)• The Fundraising Committee (A committee of the Board)• The Finance, Property and Investment Committee (A

committee of the Board)In an ex officio capacity, the CEO, together with the relevant

General Managers of the Society, are part of, and inform, those committees. Each committee reports to the Board, the majority of whom are people living with multiple sclerosis, directly elected by the Members. All Members are actively encouraged to participate through those channels and all Members are actively encouraged to stand for any Board vacancy as they arise each year, as required within the Society’s Constitution.

The meeting closed with the appointment of RSM Bird Cameron as Auditors for 2014-15.

Copies of the Society’s Annual Report and Audited Financial Statements, and particularly the Statement of Comprehensive Income, are available on request (phone (08) 9365 4888).

Do you want to receive the Bulletin online? Want monthly information updates?

Register your email address today to start receiving our monthly Vitality e-newsletter and the Bulletin magazine online.

Just email [email protected] or call 6454 3114 and let us know your current email address.


MSWA Christmas/New Year Closure 2014Most facility based Member Services programs close the week ending 19 December 2014 and reopen on the week commencing 19 January 2015.

An on-call nurse is available between 9am and 3pm, except on weekends and public holidays, supporting immunotherapy and newly diagnosed Members on 0458 362 188.

An on-call counsellor service is available between 10am and 2pm, except on weekends and public holidays on 0458 999 422.

If you need to contact us over the break:• Please contact Individual Options (on-call phone) on

0417 982 814 and they will redirect your enquiry.• The contact us website link is monitored over the break

at mswa.org.au/Get-In-Touch; someone will get back to you by email as soon as possible.

Other useful contacts:• Health Direct for 24-hour phone advice 1800 022 222,

or your GP or locum.• In an emergency, present to an Emergency Department.• Lifeline is available for phone counselling. Call 13 11 14. • Crisis Care for people in crisis. Open 24-hours, Monday

to Friday. Call (08) 9223 1111.• Healthcare Direct where you can speak with a

registered nurse about any symptoms you may be experiencing. Available 24-hours a day seven-days a week. Call 1800 022 222.

On behalf of MSWA staff we extend Seasons Greetings to all Members and their families and wish you and yours a very Merry Christmas and Happy New Year.Take care, see you in 2015!

From the desk of the CEO Marcus Stafford

“Hey mate”, the wise man said to the young jockey. “Don’t be so focused on the finishing post that you forget to enjoy the ride.”

With those words of wisdom setting the scene for my article, let’s briefly reflect on the Society’s recent ride and spend a little time thinking about the tremendous dedication and skill of our ‘jockeys’!

The Editor has summarised the content of the Annual General Meeting, with a detailed account of our record year, so allow me to take a slightly different tack by acknowledging our staff.

By and large they are not like other staff with whom I have worked. I am not criticising those ‘other staff’ either. Many of them were very conscientious and focused on delivering shareholder return. But our staff tend to think differently. They realise that our shareholders are members of a club they never wanted to join and that the everyday worries of paying bills and placating bosses are nothing when compared to grappling with an incurable condition.

So our staff have a level of dedication, rarely seen. They work nights and weekends. They take calls at odd hours, and they worry! They will worry until they are satisfied that they have done what it takes to get it right. It doesn’t matter if they are working in Member Services, finance, admin or fundraising, their desire to do the best for people with MS drives them to a level of achievement that is truly remarkable.

I throw numbers around like they are going out of fashion. Over 450 staff. Over $30 million in revenue. Over $20 million in assets. 400,000 hours of Member Services. $1.25 million in research funding.

But that’s not it, you know. Behind every number sits a human story.

It might be the young person who has just left their neurologist’s appointment having received the shocking news of their diagnosis. They will wake up tomorrow morning with research for a cure on their mind.

Or it might be the person who, fighting to retain their mobility, has just left our physio session. That same person who through our associate care funding is able to stay living in their own home.

Or perhaps the resident in one of our superb, high-support accommodation facilities, remembering with a lingering sense of injustice how they were once painfully slouched in a manual wheelchair in an aged care facility.

For a moment, consider your own human story. Go on. Be self-indulgent. I give you permission! Perhaps you are that person who is coming to terms with your diagnosis. Or perhaps your unique stage has you focused on retaining your mobility. Or then again, you might be relying on our Care Support Worker to help you in ways you never built into your life plans.

Rest assured. Our dedicated staff never forget that behind every number sits your human story. We will be there for you.


I found this lovely quote in an Oprah book! I think it must have been the first documented comment around seeing things as “glass half full”! Of course, that is often easier said than done and sometimes certain challenges can make this a harder perspective for many of us.

This year has flown by once again. The festive season is looming and as I have said before, I do like Christmas with all the decorations and hunting for presents. It’s a chance for most of us to encourage family and friends to get together and be nice to each other! I can remember some family Christmases that failed to fully achieve the desired outcome with heated debates overtaking the festive cheer! Fortunately, a thing of the past!

Reflecting back on this year, it has been one of opportunity, some challenges, ongoing changes and very satisfying achievements. At MSWA, we are very fortunate to have such great fundraising capacity through skill and good management. These additional funds allow us to top up government funded programs and grow our services and supports for our Members. In addition, we provide significant funding to the MS research efforts in Australia; over $1 million again this year.

Our Health Team have continued to support Members by providing advice, information, assessments and supports. We have expanded our traditional supports to include both metro and regional educational forum programs, and introduced and increased some specialised interventions such as the Sleep Advisory Service, the Speech Therapist role and our new Balancemaster programs.

This year, several Health Team staff have been asked to speak at conferences in WA, nationally and internationally. This is such a great acknowledgement of their MS knowledge and expertise.

We officially opened Hamilton Hill 2 this year, bringing the number of high-support accommodation places to 32 across four sites. To put it in context, in 2003 we only had Fern River with seven places. I’m so pleased to report we only have one

vacancy currently and plan to build more units in the near future.Many changes are afoot; the NDIS Hills and My Way NDIS

Southwest trial sites are off and running. We continue to monitor progress on these and the other sites in the eastern states. Members living in these trial sites have already, and will in the future, receive information from us about how they can make contact with the agencies.

The much awaited phased opening of the Fiona Stanley Hospital is underway, with the Royal Perth Hospital (RPH) Shenton Park rehabilitation campus already occupying their new wards. The rest of the hospital will be opening through to March 2015. This involves changes for RPH and Fremantle Hospitals, but the new hospital is very impressive. Work on new sites for both Princess Margaret Hospital (at Nedlands) and Swan Districts Hospital (at Midland) are well underway and will bring positive change, and improved health services in WA.

The MS world continues to move forward in a positive way with more new treatments approved for Relapsing-Remitting multiple sclerosis, offering greater choice and opportunities for treatment. Of great excitement is the long awaited focus that is now being placed on progressive multiple sclerosis. An international alliance has been formed to develop a better understanding of the cause, its effects and to explore potential therapies through research and clinical trials.

As the year comes to a close, I would like to wish you all a safe and happy festive season on behalf of all of the Member Services team.

We are here to provide you with information, advice and support throughout your individual journey. We have access to up-to-date information and the latest research news from around the world so please contact us and let us know if we can be of assistance. You can call reception on 9365 4888 (note Christmas closure details) or through the contact us link on our website mswa.org.au/Get-In-Touch

“ Barns burnt down. Now I can see the moon” Mizoto Masahide (17th century Japanese poet).

A message from the General Manager – Member Services Sue Shapland

South Metropolitan Health Service Update

Along with the phased opening of Fiona Stanley Hospital, other changes in the south metropolitan area have commenced.

TERTIARY HOSPITALSFiona Stanley Hospital (FSH) a new 783-bed tertiary hospital will offer a range of health services including the State rehabilitation service (opened October 2014), cancer centre, mental health unit, maternity, paediatric and neonatal services and the State adult burns service. Some general medicine, general surgical, orthopaedics and anaesthetics services have commenced along with obstetrics, gynaecology and neonatal services. The Emergency Department opens March 2015 and Fremantle Emergency Department will close.

Shenton Park campus and Kaleeya Hospital are now closed.

GENERAL HOSPITALSArmadale Health Service will have 290 beds with an Emergency Department and Intensive Care Unit.

Rockingham General Hospital will have 242 beds (includes Murray District Hospital beds), general hospital with an Emergency Department and Intensive Care Unit.

Peel Health Campus is a general hospital with 140 public beds.

SPECIALIST HOSPITALSFremantle Hospital will have 300 beds providing high-quality aged care, mental health, secondary rehabilitation, planned surgeries and medical services.

Bentley Hospital will have 199 beds providing mental health, aged care and rehabilitation services, as well as some general medical services.

Further information visit southmetropolitan.health.wa.gov.au


Here we bring you brief summaries on research updates found online from around the world.

From the UK MS Trust site:Spelman T, Gray O, Trojano M, et al. Are relapses more likely to happen at certain times of the year?

This study analysed information from the international MSBase registry to see if the number of relapses varied by season. 32,762 relapses in 9,811 people were reviewed along with information on the daily average UV radiation for each month at each site.The study identified that:• relapses were most common in the spring and least

common in the autumn; in both hemispheres; and • there was a relationship between season, amount of sunlight

and risk of relapse. The researchers commented that potential influencing factors could include vitamin D levels and infections, and suggested further studies are needed to test their theories.

The effect of multiple medications on fatigue and cognition in MS

Thelen JM, Lynch SG, Bruce AS, et al. Polypharmacy in multiple sclerosis: relationship with fatigue, perceived cognition, and objective

Polypharmacy (taking five or more medications a day) has been shown to have detrimental effects in groups such as the elderly. This American study looked at the effects in people with MS.

Eighty five participants provided a list of their current medications and completed a number of questionnaires and tests. Thirty three percent of participants were taking five or more medications a day and reported more memory problems, more fatigue, difficulties in processing information and prospective memory (remembering to perform a planned action at the appropriate time), than those taking fewer medications.

The results suggest polypharmacy may play a role in fatigue and cognitive difficulties seen in people with MS. The authors noted their study was the first to look at polypharmacy in MS and recommended more studies.

Does smoking make MS cognitive symptoms worse?

Ozcan ME, Ince B, Bingöl A, et al. Association between smoking and cognitive impairment in multiple sclerosis

Research implicates smoking as a trigger for MS and suggests it can increase the number of relapses and disability progression. Despite the evidence for its role in influencing the course of MS, the effect of cigarette smoking on cognition has not been investigated.

Seventy two people with MS from Turkey took part in a study and were asked about their smoking habits. Cognitive function was assessed using the Brief Repeatable Battery of Neuropsychological Tests assessing memory, attention, language function and how well the person can process information.

Twenty four non-smokers were compared with 20 heavy smokers. The results showed heavy smokers had cognitive difficulties and their problems with memory and information processing were significantly worse.

The study shows that heavy smoking appeared to be related to cognitive difficulties in people with MS.

How common are sleep problems in MS?

Features of sleep disturbances in multiple sclerosis patients

Previous research found people with MS have more sleep problems than the general population. This study identified how common sleep problems were and if they were related to levels of depression, anxiety and quality of life.

One hundred and thirty seven people with Relapsing-Remitting MS in Lithuania were in the study, completing questionnaires on sleep and several other factors, including depression and anxiety that may impact on sleep.

The results showed sleep problems affected 45% of participants. Women had more sleep problems than men. Women felt more sleepy and drowsy in the daytime, despite sleeping more hours a night. Sleep problems were significantly more common in men and women over the age of 45.

The study found a relationship between sleep problems, depression, anxiety and quality of disorders in people with progressive MS.

Round-up of research and other items of interestSue Shapland RN, BN

Read more at: mswa.org.au/

researchupdate


The underdiagnosis of sleep disorders in patients with multiple sclerosis

Published in the Journal of Clinical Sleep Medicine; Volume: 10 Numbers: 11Steven D. Brass, M.D., M.P.H., M.B.A.1; Chin-Shang Li, Ph.D.2; Sanford Auerbach, M.D., F.A.A.S.M.3

A large study was conducted to identify the prevalence of restless legs syndrome, insomnia, and the risk of obstructive sleep apnoea in MS patients. Sleep patterns and associations with fatigue and daytime sleepiness were also explored.

Of 11,400 surveys mailed out, 2,810 were returned and 2,375 were included in the study. Among the participants, 898 (37.8%) screened positive for obstructive sleep apnea, 746 (31.6%) for moderate to severe insomnia, and 866 (36.8%) for restless legs syndrome. Excessive daytime sleepiness was reported by 30% and more than 60% reported an abnormal level of fatigue.

The study identified significant numbers were positive for one or more sleep disorders with the vast majority being undiagnosed. Greater attention to sleep problems in this population is warranted, especially in view of fatigue being the most common and disabling symptom of MS.

From the MS International Federation website:The Progressive MS Alliance

Formed in 2012, the international collaborative Alliance will focus on four priority research areas to provide breakthrough treatments. These include: • better understanding of progression so we can identify and

test treatments; • designing shorter, faster trials that measure patient outcomes; • conducting trials to test agents; and• developing and evaluating new therapies to manage symptoms.The first research grants were announced at ECTRIMS in September.

From the MSRA and Monash University websites: Australian researcher funded by the International Progressive MS Alliance.

Of 22 successful applicants, in nine countries, Monash University’s Dr Steven Petratos is the only Australian researcher who received funding in the International Progressive MS Alliance first round of grants.

His research is into new therapies to stop progressive MS, a chronic condition worsening over time; impacting on mobility, cognition, vision, and ability to work.

Nerve fibre damage is thought to underlie the progression of disability in MS. Dr Petratos and his team have been working to understand how the fibres are damaged during MS, leading to permanent disability. The team has found evidence that a

specific protein, when present in an abnormal form, may play a role in nerve cell damage. They are currently trialling a stem cell-based strategy to deliver a protective drug to limit the damage occurring in the brain of individuals with progressive MS.

“We have identified a damaged protein in nerve fibres that we can now target therapeutically to stop progressive MS from worsening, and enhance the quality of life of all individuals living with this devastating disease,” Dr Petratos said. “The grant will enable us to investigate the strategy further toward pre-clinical trials.”

Dr Petratos said without the generous support of the alliance, the National Multiple Sclerosis Society of the USA, and Multiple Sclerosis Research Australia, the team would not have been able to further their work towards a potential therapy.

Multiple Sclerosis Society Canada:A comprehensive, nationwide MS Society-supported study provides clues about factors that contribute to living a long and healthy life with MS.

Ploughman M et al. The Canadian survey of health, lifestyle and ageing with multiple sclerosis: methodology and initial results.

This Canadian MS Society supported study provided clues about factors contributing to living a long and healthy life with MS.

People with MS are living longer than in the past, which is likely attributable to a general higher life expectancy and increasingly effective treatments for MS. Strategies for reducing disability and improving quality of life in later years have become of greater interest, identifying a need for research in the field of aging with MS.

A national survey recruited 743 participants. They completed a survey with five sections; including demographics, MS disease characteristics, physical health and disability, lifestyle behaviours, fatigue, mental health, and social support. The average age of respondents was 64.6 years and reported living with MS for an average of 32.9 years. Ten percent were employed and 28.6% reported to be severely disabled.

The researchers identified that the participants had higher fitness levels and were less likely to take part in risky health behaviours such as drinking alcohol and smoking, compared to participants surveyed in a Canadian Community Health Survey.

The study highlights the importance of studying lifestyle behaviours in older MS populations. Data suggests that people with MS are becoming more physically active even as they age.

The researchers noted that previous European studies demonstrated that healthy lifestyle behaviours are associated with less severe and less rapid disease progression. Similar studies have also shown that poor lifestyle behaviours, such as smoking, contribute to increased risk of acquiring other conditions and lowers quality of life.

Further work in several areas examined in this Canadian survey will help people living with MS to employ positive health behaviours and lead to interventions promoting successful aging with MS.

Round-up of research and other items of interestSue Shapland RN, BN


October was National Mental Health month and for the first time in memory, it received the type of publicity it deserves. ABC TV ran a week of programs specifically referencing and addressing the many facets of mental health. Some of these programs were confronting in revealing personal stories of living with a diagnosed condition. Others used humour and storytelling to explore the diversity of mental health and bring awareness to how you can track your mental health.

So, what is mental health? Mental health is related to our emotional, psychological and social well-being. Mental health affects how we feel and act toward ourselves and others. Good mental health allows us to live our lives in the way we want to in relation to work, study, social interactions and community involvement. Being mentally healthy allows us to be resilient to change and helps us to make choices - particularly in stressful situations.

Unfortunately, mental health has long been considered a dirty word. In Australia, it is perfectly acceptable to discuss gym memberships, dietary changes and GP’s but very rarely will we talk about the counsellor, psychologist or psychiatrist we are seeing, or thinking about seeing. You might get your blood pressure checks, eye tests, skin cancer checks, prostate examinations, pap smears and mammograms as ongoing preventative healthcare but when was the last time you stopped to assess your mental well-being?

Our mental health can be impacted in different ways. One is not taking the time for self care. Having the self-esteem to allow yourself the time to do the things that bring you meaning and pleasure can

be challenging. Learning your biological and emotional responses to stress can help act as a gauge to determining what you need to do for yourself. It can help you recognise when you may need extra support, what that might be and who to ask. Learning to say no is often one of the more useful skills to have for self care.

A traumatic experience may also have a direct impact on mental health. Trauma is an emotional response to a shocking event or experience. Everyone has their own perception of how an event impacts upon them. It is important to recognise that what may be water off a duck’s back for one person, is deeply upsetting and traumatising for another. Being able to safely explore trauma responses is important for ongoing mental well-being.

As with all aspects of health and well-being, our mental health deserves as much attention as the rest. Talking with those closest to you when you need support or suspect that maybe they are struggling is not a weakness, but a sign of good self care. Being able to talk about psychological and emotional well-being allows for a normalising of the experience and opens up opportunities to feel less alone and seek support.

MSWA offers many services for our Members that cover the different aspects of well-being. Our team of university trained counsellors are available to assist in the maintenance of your psychological and emotional well-being. Counselling is a confidential, non-judgemental space to explore issues that may be impacting on the way you are functioning in your life. It is a place to be empowered to initiate choice or change. Embrace maintenance of your mental health as part of your overall well-being plan as ignoring it does not mean it doesn’t exist.

Mental health is not a dirty word! Leonie Wellington

“Health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.” World Health Organisation, 1946.

Not sure if you or someone you know is living with mental health issues? Experiencing one or more of the following feelings or behaviours might be an early warning sign of a potential escalating problem.• Eating or sleeping too much or

too little• Pulling away from people and

usual activities• Having low or no energy• Feeling like nothing matters• Having unexplained aches

and pains• Feeling helpless or hopeless• Smoking, drinking or using

drugs more than usual• Feeling unusually confused,

forgetful, on edge, angry, upset, worried or scared

• Yelling or fighting with family, friends or colleagues

• Experiencing severe mood swings that cause problems in relationships

• Having persistent thoughts and memories you can’t get out of your head

• Hearing voices or believing things that are not true

• Thinking of harming yourself or others

• Inability to perform usual daily tasks

If you, or a loved one, is experiencing any of these signs, it is best to consult your GP in the first instance as there may be other health issues that have similar symptoms. Alternatively, you can call the Counselling Department on 9365 4811.


I have the fondest memories of receiving a new colouring book, paint by numbers kit or dot to dot book as a child. I would become absorbed in the process of selecting the colours and deciding how I wanted the pictures to come to life. It took away the anxiety of having to draw something and left me with the freedom to just enjoy putting my mark on the outline.

Colouring books first came into being in the 1880s and became increasingly popular for children as an education tool, a therapeutic tool and for entertainment. Recently, the idea of colouring as a kids only activity is being turned on its head. There is a growing market for adult colouring books. I was very excited to see I could bring my love

of colouring out into my adult life.It seems the French have embraced

the idea of adult colouring-in as a way to relieve stress. Although there is no research to back this up, the real-life experiences of people who are using colouring as a stress reliever are positive. Reducing headaches and feelings of anxiety are some of the reported benefits. This doesn’t surprise me at all.

Tibetan Buddhist monks have a traditional spiritual and meditative practice of building sand mandalas. These mandalas have a specific design that is carefully and painstakingly recreated with grains of coloured sand. The design is created over a series of days and once completed, there is a

ritual to sweep up the design and place the sand into local flowing waters to distribute the spiritual healing energy.

I have had the privilege of witnessing this practice on a couple of occasions and was struck by how it reminded me of colouring. By choosing to take time to sit and focus attention on the colouring process there is an opportunity to slow the breath, relax muscles, focus thoughts to the here and now, and in turn feel less of the biological effects of stress. So, if the thought of revisiting colouring appeals to you, there are many books available to turn your hand to. Grab those sharpeners, and break out the crayons and felt tips to explore your colouring calm!

Sitting Still Like a Frog: Mindfulness Exercises for Kids (and Their Parents)Author - Eline Snel

This is a compact, easy to follow book and CD for parents and children. Eline Snel is a therapist who runs the Academy for Mindful Teaching in the Netherlands and has been developing mindfulness based programs for over 20 years. This book is aimed at 5-12 year olds, and includes 11 different exercises that are engaging and fun.

Mindfulness practices can help children remain calm, more focused, reduce worry and anger, and assist in falling asleep. This book also allows time for children and parents to learn these techniques together, providing parents with the opportunity to reduce their own stress. The beauty of mindfulness techniques is that once learned, they are carried for a lifetime and can be accessed when required.

I Just Want to be Me! Building Resilience in Young People and I Just Get so Angry! Dealing with Anger and Other Strong Emotions for TeenagersAuthors – Timothy Bowden and Sandra Bowden

These two books have been written specifically with teenagers in mind. Timothy and Sandra Bowden are both school counsellors with teaching backgrounds who are passionate about the benefits of Acceptance and Commitment Therapy (ACT). Both books use a comic book style to follow the journey of the main characters as they are introduced to the basic principles of ACT. These self-help books are designed to appeal to adolescents and apply ACT to the issues that are important and relevant to them. The principles of ACT can assist in empowering teenagers to take action in the way they make choices and manage the more challenging aspects of their lives.

The Illustrated Happiness Trap: How to Stop Struggling and Start LivingAuthors – Russ Harris and Bev Aisbett

This one is for adults like me who start a book with the best of intentions to read it all only to be overwhelmed by the amount there is to read. Dr Russ Harris has teamed up with author, illustrator and counsellor, Bev Aisbett, to present an illustrated version of his bestselling book. It is concise and clear without being overwhelming in content. The illustrations are a great cue for reinforcing the techniques presented in the book.

There is a societal expectation to be happy, and that in itself leads to more stressful and anxiety filled lives. Through the principles and practices of Acceptance and Commitment Therapy (ACT), this book provides steps to escape the happiness trap and live a more meaningful life closer to your true values.

Colour me karmaLeonie Wellington

Mindfulness book reviews


Summer is upon us and we thought it timely to remind all Members of the importance of keeping your body well hydrated.

Dehydration can actually start to occur even before we feel thirsty. It is a good idea to set yourself reminders throughout the day to have a glass of water. You could also set regular intervals to have a small glass, or a few sips of water. Drinking 6 to 8 cups a day is generally a good guideline to follow.

Hot humid weather combined with using air conditioning can cause the skin to lose moisture, making it dry and increasing the risk of skin breakdown.

Water keeps the skin supple, moist, and healthy which is an important factor in decreasing the risk of getting a pressure injury. If you do have an open wound or sore, it is important to drink more as you can lose more than a litre of water a day just in the healing process!

Water assists in the absorption of vital nutrients, digestion, excretion and maintaining normal body temperature. Given that MS can cause difficulty with regulating body temperature, drinking lots of water may help with this.

Water helps to rid the body of toxins.The body can adjust to a state

of dehydration, so you may actually be significantly dehydrated before you are aware.

How to know if you are dehydrated:• Little or no urine, or urine is a

darker colour• Dry mouth• Sleepiness or fatigue (more so than

what may be normal MS fatigue)• Extreme thirst• Headache• Confusion• Dizziness or light headed• Decreased tears when crying

If you are having difficulty drinking due to being unable to hold a regular cup, and need to rely on others, here are some alternatives:

Drink Aid: This is a hands free way of drinking. The bottle is attached to either a wheelchair or bed. Fluids are sucked through a strong stiff straw that can be positioned in an accessible place.

Camel Bak: This is a water bag that can hang on a wheelchair. It has a long piece of tubing that can be picked up and requires a sucking action to get to the fluid. They do require some hand function. Make sure you get a Bite Valve so that it doesn’t drip when not being used.

If you would like to discuss the best option for you please contact the Occupational Therapy Department on 9365 4888.

For many with multiple sclerosis, keeping cool is not only about comfort, it is essential so as to continue with their normal routines and activities. Here are a few ideas to help you keep your cool in the hot summer months ahead.• Wear loose fitting clothing. Light colours are cooler than dark colours, cotton is cooler than synthetics.• Keep a water spray bottle on hand or in the fridge for a refreshing spray on your face or body.• Fans can make you feel cooler, even in air-conditioned areas.• Freeze water in your drink bottle. • Have a cool or tepid shower.• Alter your exercise routines and take advantage of the cooler times of the day. If necessary, reduce your exertion. • Don’t get dehydrated, drink plenty of water. Avoid caffeinated drinks and alcohol as these are dehydrating.• Wet your hat when outdoors or wrap a wet handtowel around your neck (you can cool it in the fridge prior to use).

Try a cooling neck tie or cooling vest (physio have a list of stockists).• Eat cold foods and snack instead of eating full meals.• Avoid cooking with the oven or stove, use the BBQ outdoors instead.• Visit places that are cool such as the library, movies or shops.• Close your windows, doors and blinds to keep the heat out. Open again when it is cooler outside

and let the breeze cool the home.• Fill a hot water bottle with cold or icy water, this may help you sleep too.• Have your air conditioner serviced for maximum efficiency.Adapted from medicinenet.com “15 ways to keep cool when it’s hot” 26/10/12

Keeping cooler in summer – Sandra Wallace

The importance of staying hydrated Robyn Loxley


Over the last few years, the Eastern Health MS Service (Melbourne) Continence Nurse has developed and trialled a screening tool. She identified the extent of bladder and bowel problems in 130 multiple sclerosis patients. The results revealed many patients experienced high levels of urinary and bowel problems, including incontinence, and yet they hadn’t mentioned the problem to their neurologist or a MS nurse.

These findings led to the development of this project, which is funded through MS Research Australia, and aims to identify the degree of bladder and bowel problems in people with multiple sclerosis across Australia and New Zealand.

As part of the study, the MSWA Nursing Team are keen to use this continence screening tool in WA to determine the prevalence of bladder and bowel symptoms, and the impact of bladder and bowel symptoms on quality of life.

All participants will be eligible if they fulfil the following criteria:• aged 18 and over; with a known diagnosis of multiple sclerosis;• able to read English sufficiently to comprehend the study

requirements and give informed consent; and• have experienced any bladder or bowel symptoms.

If you are interested in participating in this study, please contact us on 9365 4888 to speak with the Nursing Team.

Keeping cooler in summer – Sandra Wallace

How do bladder and bowel problems impact quality of life in MS?

Sue Shapland

Check out Marcus’s blogHave you read Marcus’s latest blog post? If not, why not check it out? You’ll find more information on useful topics for people living with MS. Also, he occasionally invites guests to blog about topics they’re particularly well versed in. ‘Like’ us on Facebook to be notified when the latest post is available or visit MSWesternAustralia.blogspot.com to view them all.


Did you know…One of the main triggers for tossing and turning throughout the night is overheating! In most cases, if you are sleeping and the temperature rises above 24°C or falls below 12°C it can wake you up.

Research has shown that there seems to be an ideal temperature range for sleep and when this temperature is very high, it takes longer to fall asleep. Once sleep is achieved, it is broken up or fragmented, there is less dreaming and we are more restless. The exact temperature can vary from person to person, and while scientists have not agreed on an ideal temperature for sleep, they do agree that a slightly cool room contributes to good sleep. Body temperature naturally falls during the second stage of sleep and reaches its lowest point about four hours after the onset of sleep. However, multiple sclerosis can contribute to difficulties with the automatic responses required for regulating body temperature. You can assist with keeping your body cool by implementing the following suggestions:• Adjust the temperature on your air

conditioner to between 19°C and 22°C.• Use a fan. It has the added benefit

of producing “white noise” which blocks out other disruptive sounds during sleep.

• Select linens and bed clothes that are not too heavy or confining. Information on suppliers for thermo-regulating sheets, available for trial, can be obtained from MSWA.

• Keep heat out during the day by closing blinds and windows as needed.

• Sleep on the ground floor if possible, heat has a tendency to rise.

• At night, open your windows if the temperature outside is lower than it is inside.

• If there is absolutely nothing you can do to cool off at home, consider asking friends or relatives with cooler homes whether you can stay with them for a few nights!

Before going to bed• Water is a great cooling agent – showers

and baths before bed may help. Some people take warmer showers when the room temperature is very high, assisting the body to cool naturally by perspiring. However, hot showers increase the humidity, which could make fatigue worse.

• Some people have found that being sprayed by a plant mister or gadget that creates a fine mist may help.

Preparing for future heat waves1. Consider investing in an air

conditioning unit. 2. If you are going to buy one, make

sure that you obtain the right size. You don’t need a huge air conditioner for a small room. Ask the vendor how to calculate the size of the air conditioner you need. Remember, if you use a room air conditioner, it’s best to close the room off.

3. Air conditioning grants from Lotterywest are available through MSWA for those who meet the income eligibility criteria.Please contact Sandra Wallace, Occupational Therapy Manager, on 9365 4804 for more information.

Protect your healthRemember that when you sweat a great deal, you lose both water and electrolytes. This can be dangerous. Make sure that you replenish both and do not become dehydrated.

Avoid excessive and unprotected sun exposure. Sunburn will add to discomfort in trying to sleep when it is hot.

The Sleep Foundation suggests…• Sleep often, as long as possible in

your usual night schedule and then rest during the early afternoon if you get the time.

• Drink lots of cool fluids and eat smaller, more frequent meals.

• Freeze a damp washcloth – this can be used as a nice, cool compress but is not recommended if you have sensory difficulties.

• Try showering and leaving your hair wet. Alternatively, place a cool pack on your head, neck, or shoulders before bed.

• If you use fans in your home, be sure there is a path for air to flow by keeping the bedroom door open.

• Place a pan of ice cubes in front of a fan to cool the air being circulated. If you don’t have an ice pack, try using something from your freezer like frozen veggies.

• Postpone outdoor activities if they require too much activity.

For further information on sleep, please contact Bel Cobcroft on 9365 4861.

Sleep in the heat Bel Cobcroft


Upcoming Programs

Fatigue Management Program 2015Do you run out of energy before getting through your daily tasks? Have you reduced your leisure activities because you are too tired?

In 2015, the Occupational Therapy Department will be running Fatigue Management Programs at four outreach centres. Programs run once a week for seven weeks and assist Members to develop strategies to more effectively manage their fatigue.

Dates and times for the planned programs are indicated below, but will run only where there are sufficient numbers. Prior registration is essential.

• Wilson: Tuesday, 21 April – 2 June, 10am-12pm

• Wangara: Thursday, 23 April – 4 June, 10am-12pm

• Rockingham: Thursday, 23 July – 3 September, 10am-12pm

• Beechboro: Tuesday, 13 October – 24 November, 10am-12pm

If you would like to attend one of the above programs or would like more information, please contact Verity on 9365 4833.

Relaxation Program 2015Do you find it difficult to wind down? Do your “3am thoughts” keep you from getting back to sleep?

The Occupational Therapy Department will be running Relaxation Programs at four outreach centres. Sessions will be 1.5 hours a week, over four weeks. The programs aim to teach various relaxation strategies that Members may find helpful in achieving better sleep, managing fatigue, and coping with everyday life. Members of all physical abilities are welcome to attend.

Dates and times for the planned programs are indicated below, but will run only where there are sufficient numbers. Prior registration is essential.

• Wangara: Thursday, 12 February – 5 March, 10am-11:30am

• Wilson: Tuesday, 10 March – 31 March, 10am-11:30am

• Beechboro: Tuesday, 21 July – 11 August, 10am-11:30am

• Rockingham: Thursday, 15 October – 5 November, 10am-11:30am

If you would like to attend one of the above programs or would like more information, please contact Bel on 9365 4861, or Verity on 9365 4833.


For those of you who don’t know me, my name is Narelle and I’m an Occupational Therapist at MSWA working in the area of sexual expression/intimacy.

In September, I was fortunate enough to attend a “Sexual Dysfunction Masterclass” at the Queens Square Neurological Clinic in London. I was also given the opportunity to present – from a therapist’s perspective – and chat about my work at MSWA. Quite an honour!

Amongst the presentations, including nurses, a sex therapist from Israel, a neurologist and a urologist, one stood out for me – Alex Cowan.

Alex, who was diagnosed with multiple sclerosis many years ago, began her presentation by stating that she did not like the name of the masterclass. She experienced challenges with her sexual function and intimate activities, however, she did not consider herself to be “dysfunctional”. She is a functional woman.

Alex spoke openly and at length about body image and her struggles in this area. When faced with a changing body which challenged how she felt as a sexual being, she chose to confront this by posing for a tastefully done naked photo shoot. An interesting and brave idea which evidently worked for her!

She went on to describe how she resisted getting a catheter, worrying further about how this would affect her body image and finding it very difficult to get information. When she finally chose to go ahead with the procedure, there was no discussion as to where the site would be. It was placed below the bikini line to “allow sun baking”. It was only after discussing the concerns that she and her husband had regarding the siting and its impact on their intimate activities, that Alex discovered it could have been placed higher. This would have had less impact during sexual activities. She subsequently underwent surgery a second time to have the catheter moved.

Her message to the medical staff in the room was clear: don’t assume that sexuality is not an area of concern for your patient – bring up the topic for discussion!

I came away from Alex’s presentation feeling very fortunate indeed to hold my position at MSWA. Although I do not always have the answers (everyone’s experience is unique after all), I can promote discussion amongst staff and Members on the potential importance of sexual expression and provide ideas for strategies to manage challenges.

Keep your eyes and ears open in the coming year for some new resources to assist in tackling those tricky issues, e.g. low libido and fatigue.

In the meantime, please do not hesitate to contact me on 9365 4888 if you have any queries or concerns, or would just like a chat.

A brief report from the Sexual Dysfunction Masterclass, London Narelle Higson


Remembering Berlin

Ros Harman

“There are times when thinking about something is the worst possible policy.” John Christopher, When the Tripods Came

I have often experienced the tension between the desire for spontaneity and the urge to plan.

I once had the opportunity to see the fall of the Berlin Wall as it was happening, but I chickened out. It was 1989, one year after I was diagnosed with multiple sclerosis. I had experienced a debilitating MS flare-up and spent some time in hospital, and I had come out the other side of this relapse only slightly physically weaker but feeling like my world had shifted from under my feet. My then-husband had the offer of a few months of contract work in London, so we decided to do some travelling as we didn’t know what the future would hold for me.

At home in Australia, news from Europe had always seemed remote and somehow irrelevant to the daily concerns of our lives. But, in our tiny flat in East London, we felt like we were at the centre of the universe. Everything was happening right here, on our doorstep. The papers were full of news about the events that led eventually to the end of the cold war between the Soviet bloc and the West, as one country after another boiled over. By early November, the infamous Berlin Wall had been metaphorically and physically breached, and television footage showed people with sledgehammers attacking it as crowds cheered. The air was electric with what was possibly the most significant global political event of my lifetime to date.

In a blatant display of the best and worst of capitalism, advertisements immediately began appearing for tours from London to Berlin to “witness the fall of the wall”. Dodgy tour operators

offered cheap no-frills bus trips to Berlin for the weekend, with dubious accommodation an optional extra. My husband was very keen to go, but I was too scared. The experience of losing the ability to walk for a few weeks had left me psychologically battered. Although I had been brave enough to travel all the way from Perth to London, a bus tour to Berlin seemed like a trip too far.

Living with Relapsing-Remitting multiple sclerosis brought huge uncertainty into my life, and I had become a person who craved routine and regularity. To deal with this I began developing all sorts of daily plans. Making a plan for everything I did made me feel safe. I didn’t always stick to my plans, but at least I had them.

I would start each day with a ‘To Do’ list. One day, I spent hours with cookbooks and magazines making a two month menu plan complete with shopping lists. I had plans for daily exercise routines, leisure activities, housework and social occasions. I even had a plan for which books I was going to read, and in which order. Having a plan brought an element of steadiness into a life that had become an uncomfortable rollercoaster of relapses and remissions. My reasoning was, “I may not know whether I’ll be able to walk tomorrow, but at least I know what I’ll be having for breakfast”.

Plans are different to goals. While I had daily life plans, I didn’t dare to have long term goals. Any dreams I might have had were securely confined to the netherworld of sleep. I was acutely aware of the limitations that now surrounded me, and I felt like time was running out.

Strangely enough, despite all my planning, at this time in my life I also became more likely to say yes to new and different experiences. When a friend suggested getting up at four in the morning to watch the sunrise over the river, I said yes. When an opportunity arose to fly to Alice Springs and see Uluru one weekend, I said yes. When my sister suggested I jump out of a plane, I said yes. And yes, I made sure the guy I was attached to was wearing a good parachute for the landing. Spontaneity doesn’t have to mean stupidity.

Nevertheless, the bus trip to Berlin was just too spontaneous for me. I think about it from time to time, and wonder what I would do now. After years of dealing with the logistics of living with a disability, I would like to think I would say yes to the opportunity of being part of this symbolic and important historical event, and find a way to deal with the problems. Hindsight and experience offer new perspectives.

The majority of people with Relapsing -Remitting MS these days have the reassurance of medications that smooth out the rollercoaster. I haven’t had a relapse for years, and I welcome the stability this has brought to my life despite my disability.

I still make plans. But whenever I remember Berlin, I also remind myself to be open to doing things on the spur of the moment. So, with that in mind, today I am going to do something spontaneous.

Well, that’s the plan anyway.

A brief report from the Sexual Dysfunction Masterclass, London Narelle Higson


“Feeling sorry for yourself” can also be described as self-pity; and self-pity is sometimes seen as an exaggeration of one’s misfortunes. As a person recently diagnosed with multiple sclerosis, one’s radar is automatically switched on when trying to make sense of commonly used expressions to qualify feelings.

My linguistic antenna now has a heightened ability to detect qualifiers usually attributed to people experiencing challenging circumstances. Whether it is a personal situation or a chronic illness like multiple sclerosis, feeling sorry for oneself is quite natural.

Equipped with the sudden insight that a life-changing diagnosis brings at the age of 33, I would like to say from the outset that feeling sorry for yourself is not always the same as self-pity. In fact, I believe that feeling sorry for yourself is a very helpful coping mechanism for everyone, whether you suffer from a chronic condition or not.

In my experience, feeling sorry for yourself can also promote healthy self-reflection on an ongoing basis. I would describe this experience as emotional cleansing in a very intellectual way. Chances are that in those beautiful moments of raw solace, you will cry and you will also smile. In fact, I would dare say it is essential to feel sorry for yourself. In my experience, feeling sorry for myself is being kind to myself as opposed to self-pity. Embracing nostalgia can also be very fulfilling, best explained in the following verses:

Lady Mountain heralds rescue César Vallejo

Mother it is cold.Mother there is no water.Mother there is no wine.

Bring down the soursop brother.Balsam of wood for your blisters.Healing apple of the pine,Mountain coffee for your fears.

There are healing forces:Oh so strong!Mother pulling forces from the centre of the sun.

Nostalgia is critical for artistic creation. We only have to think of Bach, Albinoni, Rachmaninov! Shakespeare, Virgil, and César Vallejo! Of course, we were not around to share drinks with them and categorically say yes! They were nostalgic beings. But we don’t need to, for they mastered nostalgia in every composition, every word and in every stroke.

The challenge for us is to masterfully wield these feelings in a nourishing alchemy of self-reflection. One that will help us see our blessings, and when in a “cleansing-crying” mode, we venture into our cupboards to find a glorious collection of tissue boxes and we either thank ourselves for being proactive, or we thank our loved ones who in supreme thoughtfulness have placed a couple of boxes on top of the fridge.

Clarifying the meaning of “feeling sorry for yourself”: a case for healthy nostalgia Wildaliz De Jesús


For twenty two years I lived in comfortable denial. Then my children grew up, left home and had families, and careers of their own. Then, my husband died. I was paddling the canoe on my own.

The epiphany came like a thunderbolt; I am disabled. Denial was no longer an option. So, at sixty three years of age, and to avoid looming government financial imposts, I took my place alongside men and women at least twenty years my senior at an aged care facility.

My house is rented out. My children are confident that I am well cared for. I get my washing done, my meals cooked, my bed made and I can buy something pretty for my hair. Denial is once again comfy.

The facility, although not designed for people with multiple sclerosis, certainly meets my needs. There is in-house physiotherapy, which I attend enthusiastically, and there is entertainment. Each morning, someone reads the newspaper out loud in the common lounge room for those of us who cannot, or are too decadent, to read it ourselves.

The discussion amongst the listeners about the news events sometimes blow me out of the water. There’s judgment from experience that only belongs to seniors. It often sounds very right to me.

In the same room, and on the edges of the newspaper readings, some of the residents are away with the fairies. It is all okay. My fairies of denial probably fly amongst them.

We discovered a secret garden one night when my daughter and I were looking for a quiet spot to empty a bottle of wine. The area is lush, with pavement and lawn and tall trees. Importantly, it is fully enclosed for grandchildren.

We had a very pleasant gathering there recently. It was an afternoon tea with family. The tea lady came with her trolley and served my guests. The grandchildren followed the trolley like a Mr Whippy van. They soon dispersed to play in the garden with a tent given to them by their visiting great grandfather. It was nice to see him enjoying them playing with it as we all had scones and cucumber sandwiches. I was playing host and it was almost like being at home.

This place is a short stroll (or within scootering distance) to interesting cafes and restaurants, some of them quite lovely. There is also a spiced tomato juice at the Beaufort Street Merchant that will change your life force. If you get the chance, try it.

But it is not essential to go out. In wild weather, I have enjoyed an indoor picnic with my friend Chris who arrived with snacks and a tablecloth. We sat in the craft room and had a hoot.

There are also a couple of nice outdoor areas besides the secret garden. Some Sundays, one of my daughters arrives with a couple of takeaway coffees and two little cakes. We sit outside and watch the wattlebirds. A few times she has scared away a neighborhood cat seemingly determined to stalk said birds. It is low-level drama but it is enjoyable.

When there are no visitors or outings with friends and family, the staff do a great job. There are excursions and they put on high tea once a month. As a high tea connoisseur I would rate it an easy 9 out of 10. The cakes are great and there is conviviality, as there should be. I’ve made friends with the chef. This was not hard because she is very nice but also, I do not deny this was a wise move by me. I am finding my way.

That’s life with NarelleNarelle Taylor


Marija and her family went on a cruise to New Zealand for New Year’s last year. She talked about the first half of her cruise in the last edition of the Bulletin, here is how the rest of her trip went…

New Year’s Day started with a 6am wake-up call so we could all gather on the balcony to see the entry into Milford Sound. It was totally awesome watching this huge vessel being maneuvered so close to the sides of the sound. We saw snow-capped mountains, dozens of waterfalls and several tree clad islands of various sizes.

The tree clad mountains rose steeply from the dark water which was 300m deep in some places. At the end of the sound we did a 540° turn which gave us a wonderful panoramic view before we proceeded back up the sound. It was amazing to see such a large ship turn in such a confined space. Willy and Annette went up to the heli deck on the bow to get a better view of the large Stirling Waterfall which the ship was quite close to. They got some awesome photos and a bit wet from the spray. It was very cold on the balcony, (9°C at the lowest and 13°C at the highest) but coats, doonas and the ornamental bed-throw helped keep us warm.

Next up was the Doubtful Sound. This sound was a fiord in a V shape so we passed right through it without having to turn the ship around. The sun had come out and the mist had cleared so the views were even better. Room service tea and coffee plus some specialty sausages from the Dog House kept the hunger pains at bay until we reached Dusky Sound. It was another long V shaped sound with a number of islands named by Captain Cook. One of them was called Wet Jacket Island as one of his crew had come back with a wet jacket. Cook obviously had a good imagination when it came to naming landmarks. Guess what he saw on Duck Island?

On January 2 we docked in Dunedin after having travelled along the Otago Peninsula into Port Chalmers. We joined the Taieri Gorge vintage train on the dock adjacent to our ship for the 140 km, 4.5 hour return trip through very hilly countryside. The carriages were up to 100 years old and the train was drawn by two 1960s Mitsubishi diesel engines. It was staffed by enthusiastic volunteers who kept up a constant supply of refreshments for those wanting them. We passed over several trestle bridges and through many cuttings that had been hacked through by labourers using picks and shovels. We left the train back at the main Dunedin station. There, my husband Willy met a NZ wood turner for a wood swap. Willy had brought some WA wood and the chap brought a range of NZ ones for him. Once home, Willy used some of this wood to create pens for each of us as mementos of our trip.

My children, Lochlan and Rebecca, went off to tour the Cadbury factory while we wandered around and checked out local shops. We returned on the shuttle bus which was a “kneeling bus” that my chair could be wheeled straight on to.

We arrived in Wellington on January 4. The first day we came on board, we were amazed to find that there was a removable panel on the floor of each lift with the day written on it. After seven days on board, we were now finding that the panels were very helpful in reminding us what day it was. Straight after breakfast, we went ashore and took the shuttle bus to the Te Papa museum which we all found very interesting. After the museum, came a cable car ride. The lower end is in an arcade in the middle of town and the top end runs into a large modern building. Two cars run in opposite directions on single rails with a passing loop in the middle. The views from the top, over the town and out to sea were excellent. We had a bit of a wander around the city then returned to the ship.

A New Year’s Cruise (Part Two) Marija Nelson


Five action steps to a better self-image

Dr Andrew Ong

Set your own internal standardAccept yourself without comparing yourself with others, in other words, be yourself. In setting your own internal standards, however, have a program of continuing self-improvement in your lifestyle, profession and relationships. Associate and train with winners.

Project your best selfAlways take pride in your appearance and look your best. Dress well, smile, stand tall and wear appropriate, neat and clean clothes rather than focusing on being trendy or designer-label conscious. Your personal grooming and appearance projects how you feel to others and your inner-self.

Take stock of your self-image this weekendCheck your wardrobe, garage, desk, drawers, garden and make a priority list of what you can improve and change. Then, get rid of all the unnecessary clutter and generally sharpen up the expressions of your life.

Read the best biography each monthAs you read, imagine your life being written about the way you would like it to be.

Go on a private retreat from time to timeGet away from it all by renting a beach house, go south to the mountains, stroll through King’s Park or a lake. Reflect on where you’re heading, think about what you wanted to be as a child, what you are good at, and what you really enjoy doing. Dust off and reactivate your creativity.

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My diagnosis came almost out of the blue in 2003. The first onset was after having played a round of golf and waking up the next morning, still being able to move around but with my left leg full of burning and lots of other sensations. These sensory symptoms have never left me since day one and are a constant reminder, to a mild or greater degree, that I have multiple sclerosis.

In my role as a mining engineer, having worked globally in control of projects worth several hundreds of millions of dollars, I have somehow been able to keep moving and appear unaffected to the outside world. My last relapse was ten years ago and prior to that, I had suffered foot drop and a partial loss of sight, both of which I recovered from.

Throughout the journey with multiple sclerosis, my observation has been that you have to decide how you are going to handle it early on. We are all different and handle the curve balls of life in our own way. To me, one of the key things that frames multiple sclerosis is that currently there is no known cause and with that, no known cure. That then begs the question: what do those of us afflicted do to manage this? How do we give ourselves the best chance of making it through and maintaining a life?

When you look around at those people who are disabled by multiple sclerosis, the past treatments were not available to them as they are today. Nowadays, we can benefit from a selection of drugs and I believe we need to make the most of these and use them as a springboard to take charge and work to keep the multiple sclerosis gremlin at bay.

If you believe this thought, then the next question is: what else? From early on in my multiple sclerosis journey, I have taken advantage of some forms of complementary treatments. I recognise that these are not formal treatments in the minds of many people, but in terms of taking charge, when there is no known cause and cure, do you just sit around and hope? Instead, my focus has been built around the following:

Conventional treatmentI look like a pin cushion from the many injections over the years.

Removal of my amalgam fillingsIn parallel with homeopathy, body chemistry to excrete the toxins.

Swank diet A touchy one, but if nothing else it is a healthy way of eating. Having seen others suffering from multiple sclerosis tucking into cream buns and not talking of altering their diet, I question why not modify what is one of our most common and often abused daily activities.

Active exercise I have always been active, but with multiple sclerosis, I work even harder to exercise and stay active. This means going to the gym, running and biking on a regular basis and then snow and water skiing, golf, sailing and hiking for interest. I get a tremendous amount of joy from skiing with my children and this in itself is enough to motivate me to stay as active as possible. The harder the run, the more sense of achievement for all of us!

AttitudeThere is an anonymous quote which goes: “Our lives are not determined by what happens to us, but how we react to what happens. Not by what life brings to us, but by the attitude we bring to life. A positive attitude causes a chain reaction of positive thoughts, events and outcomes. It is a catalyst, a spark that creates extraordinary results.”

Living with MS is definitely a challenge and just maybe, we can exercise the power of the mind.

Aziko wo (Zulu for “don’t stop”) What has worked for me? I have no idea. I am well to the right hand side of the curve for the efficacy of traditional treatments and do believe that some of the other things that I have done could be aiding me on my journey. There may be people reading this who think I’m pretty lucky. My response to that is to quote world famous golfer, Gary Player. When asked why he had been so lucky in his career, his response was: “the more I practice, the luckier I get.”

An article like this would be incomplete without acknowledging and thanking my wife. Without her support and initiative, I do not believe I would be in the position I am now while living with multiple sclerosis.

When challenged with a disease like MS in which no one can give you any certainty of outcome, you can either sit around hoping or work to take charge and do everything you possibly can to try and make a difference.

Setting up for success – take charge Mike Smith


Farewell from Reception – Gail Ross

When I walked into the MSWA Wilson Reception for a two week casual office work assignment, little did I realise that I would be writing this article for the Bulletin twenty five and a half years later. When I first arrived all those years ago, I immediately observed there was a happy feeling throughout the office. Of course, there were also only a few staff then – the CEO, his secretary, one data-entry operator, two telemarketers and a very small Health Team.

Since then, I have watched the Society grow, especially over the past twelve years. It has been a very rewarding journey and an absolute honour to have worked with such a dedicated group of people, both past and present, from all departments including our wonderful volunteers, business associates and supporters.

Although my role was attached to Administration, much of my work involved Member Services. Sitting at the reception desk has provided me with an enormous amount of enjoyment over these years, thanks in no small part to the rapport I have

developed with our Members. To my manager, Andrea Taylor, and Sue Shapland, General Manager - Member Services, I thank you for your ongoing support.

I would also like to take this opportunity to wish our CEO, Marcus Stafford, the President, George Pampacos, the Board of Directors and particularly David Barnes, President of MS Australia, continuing success.

I will sign off now by flicking the switch and hanging up the phone on a wonderful career, serving the Society and people with multiple sclerosis, by wishing everyone all the best for the future. Take care everyone. I’ll be enjoying retirement with my husband, who has also decided to retire.

Picture: Gail Ross with MSWA CEO Marcus Stafford.

Navigating the seas It’s safe to say that Rob Cridge’s first dip into the water after 19 years has been a success. MSWA Member Rob and his team finished 12th out of 18 teams at the International Association for Disabled Sailing (IFDS) held in Halifax, Canada in August. An impressive feat when you consider that the team had never competed in a race together before then.

The 46 year old from Albany competed with quadriplegic, Jamie Dunross, and Frank Guidin, whose arm was amputated below his elbow after an accident. Rob was diagnosed with multiple sclerosis in 1995 and said: “Getting from one end of the boat to the other is different to before I had MS. I use an elbow crutch now to support my left leg and sometimes when I go to take a step it doesn’t come with me. My balance has also been affected, so that adds another degree of difficulty.”

Despite the challenges he and his teammates face, they are determined to be selected to represent Australia at the 2016 Paralympics Games in Rio. To achieve this, the team is required to sail competitively on a regular basis to ensure sailing skills are up to international standards. Rob and his team will be participating in various sailing events from December. To find out how you can show your support, head to their Facebook page – Southern Ocean Sonar Sailing.

The MS Society lost a dedicated and great supporter when Colin Whitton passed away after a workplace accident in September.

Mr Whitton, 66, had been involved with the Multiple Sclerosis Society of WA for the past 18 years along with his wife Lynda. Lynda has been the president of the Bunbury Outreach Group Committee for the past 10 years and has MS.

Mrs Whitton said: “Colin was always there for me as my rock when MS knocked me down.

“I couldn’t have asked for a better husband.” Chief Executive Officer, Marcus Stafford, called Mr Whitton a

“positive and community minded man who was greatly respected within the broader community and within the MS Society.”

He particularly praised Mr Whitton for his efforts in the Bunbury Swim for MS two years ago.

He said: “It was our most successful swim and it was on the back of Colin and Lynda’s work.

“He would help at sausage sizzles and get work mates and colleagues to support the Swim for MS.”

Mr Whitton leaves behind his wife, four children Paul, Brent, Hayley and Keith and four grandchildren Jake, Jesse, Georgia and Maya.

Picture: Colin Whitton (L) with his team at the Bunbury Swim.

Remembering Colin Whitton


Ocean Ride for MS 2014 The fifth annual Ocean Ride for MS took place on October 19 and despite the rain, over 1,990 participants turned up ready to ride for MS.

Participants were in high spirits as they enjoyed a scenic coast ride from Fremantle to Hillarys in either the 10km, 30km, 50km or 70km rides. The event was a huge success, raising an impressive $319,000, for the Multiple Sclerosis Society of Western Australia.

This year, three teams in particular played a big role in the fundraising efforts accumulatively raising almost a third of the total amount. Team No MSing Around raised an amazing $56,000, closely followed by Team Troppo on $32,450 and Team Parma – MCG on $21,345.

Team Captain of No MSing Around, Michael Luca, raised $30,000 alone.

The 23-year-old, who was diagnosed with MS earlier this year, said: “We wanted to raise awareness of MS as well as raise as much money as we possibly could to give something back to the MS Society of WA.

“As it stands we’ve been the most successful team that has ever fundraised for the Ocean Ride for MS and that’s something the team and I are quite proud of.”

The festivities continued after the race with plenty of activities and entertainment to keep the fun going. The West Australian Police Pipe band provided the tunes as riders enjoyed much needed leg massages while kids enjoyed the games, face painting and free fairy floss.

Thanks go to our Events Team, our many volunteers and event sponsors for continuing to make the Ocean Ride for MS a success.

Stadium Stair RaceThe Stadium Stair Race is an exciting new event at Patersons Stadium, the home of football. The unique course took participants up, down and through the iconic venue, finishing on the hallowed turf under the stadium lights. This event was the first of its kind here in Perth.

Over 430 participants took part in the event and had the opportunity to tackle a full, half or mini climb.

Thanks to the participants, a total of $42,785 has been raised so far with the dollars still rolling in. The highest fundraising team – Shanaes Shuffles – raised $5,236.

Next year’s event has been set for October 31 where no doubt it will be a spooktacular Stadium Stair Race. Keep a look out on our Facebook page and StadiumStairRace.com.au for more details.

Fundraising round-up

Mega Home Lottery – Bigger than ever! The last MS Mega Home Lottery for 2014 had everyone’s eyes on the Grand Prize, the stunning Webb & Brown-Neaves Show Home in Churchlands or $1.25 million cash.

The lucky winner was Annette Newman, who was in shock after her big win. Annette had been buying tickets in the MS Mega Home Lottery since 2010 and this was her first win. Although Annette loved the Grand Prize Show Home, she chose the $1.25 million cash prize to stay close to her family and friends.

Over 4,000 people shared in the $3.3 million prize pool which included cars, holidays and cash prizes.

Thank you to everyone who supported the MS Mega Home Lottery. Funds raised go towards funding vital research into the cause and cure for MS, and providing vital care and support services to people living with MS. The phenomenal support of the WA public has enabled the MS Society to commit a record $1.25 million to fund research this year.

Don’t worry if you’ve missed out this time around, there’s always a chance you’ll win big in the next lottery. Pre-register your interest at mslottery.com.au or join us on Facebook at MS Mega Home Lottery.

You could be our next lucky winner!


Wow! Is it that time of year again, when the jolly man in red makes sure all the girls and boys have been good for the year? Have you been good? I can’t speak for everyone, but I do believe the MS Society of WA volunteers have definitely been good. At least that’s what they tell me.

Where did this year go? It will soon be goodbye 2014 and hello 2015. It has been busy since we last chatted and I have been involved in many activities.

I attended the Members Camp at Woodman Point in September with our lovely volunteer Rosalind Beatty. Rosalind was a great addition to the camp and was extremely good at organising both Sumit and I. Thanks for a job well done.

A few weeks later, Nicola, Sumit and I started the rounds for the “It’s a Knockout” Competition. Both Bunbury and Albany Outreach Centres were well represented, and much fun was had by all. The camaraderie amongst the country Members is amazing and they bring fun and festivities to their surroundings.

The metropolitan event ran without a hitch and it was wonderful to see the Outreach Centres and our accommodation facilities all together. Congratulations to the Rockingham Rockets who were overall winners. A big thank you goes to all of the volunteers who helped, your flexibility and enthusiasm is fantastic and enhances the mood for everyone. We are truly blessed to have such wonderful volunteers.

Melbourne Cup crept up on us again and as always, the Wilson lunch was a popular event for Members, staff and

volunteers. It keeps growing each year. I wish to pass on a huge thank you to the volunteers helping on the day. All efforts were noticed and as always, greatly appreciated. I would particularly like to thank Robyn Wright and Margaret Wells for working tirelessly in the kitchen, Sheila Hayfield and Reemour Evans for running the sweeps, and Kevin Mosey and Damien Thomas for their “fashions on the field” glamourous catwalk appearance. They both looked absolutely stunning!

The Members, volunteers and staff Christmas celebration is looming. Organising such an event is a huge task and it takes many people to pull it all together. Our Wilson volunteers - Lesley Pitt and Lynn Hoonhout - design and make our table centre pieces. Well done ladies, these decorations always look amazing and are even more special as they are made with love.

Setting up on the day is a huge task and staff and volunteers pitch in to make a vacant hall come alive. And before you know it, it begins to look a lot like Christmas. We are very fortunate to have corporate volunteers from QBE attend each year to assist with the setting up and during the party. I look forward to giving you the “low down” on how the celebrations went and of course will also share some photos.

I would like to say again, a huge thank you to all of our volunteers. The time you give is always appreciated and makes a difference to all of the MS Members and staff.

I look forward to seeing you all in 2015. Take care and I wish you all a very Merry Christmas and a safe and Happy New Year.

Volunteering newsDawn Burke

Camps in 2015Sumit Sandhu

Yet another year is coming to an end and 2015 is knocking on the door! Below are the camp dates and venues for first two camps for the year:

• Carers Retreat (16/3/15 to 19/3/15) – Rottnest Island, Bathurst premium Villas• Members Camp (4/5/15 to 7/5/15) – Tuppin house, Guilderton

Rather than describing the camp experience in words, I would like to share one of my favourite photos from our Members Camp at Woodman point (right).

Dave often talks to me about his experience on this camp. It was first time in 25 years that he was able to feel the sea water rushing into his feet. It was an exhilarating experience for him!

Please feel free to call me on 9365 4843 or email [email protected]. I will be more than happy to explain all about the camps and recreational opportunities.

The MSWA Camps Program is made possible through a Lotterywest Grant.


When one door closes, another door opens. Fortunately, a much bigger door has opened for the

Members of the Multiple Sclerosis Society of WA (MSWA) as they bade farewell to Seabrooke House in Rockingham after almost 19 years and moved into a newer and larger premises on Council Avenue recently.

A farewell party was held to celebrate the move where more than 50 people turned up to say their last goodbyes.

Attendees included former masseuses, staff members, volunteers and MSWA Ambassador and West Coast Eagles player, Josh Kennedy.

The new premises are bigger, which allows for the expansion of the physiotherapy department programs, more room in massage and in the meeting area for people in electric wheelchairs. It also has more modern purpose built facilities including a kitchen and servery.

It is expected that the bigger premises and renovated amenities will attract even more Members and the possibility to expand the services currently on offer.

Onwards and upwardsMSWA Members move to bigger premises

Treendale gets gift of art Treendale Gardens was injected with a pop of colour when the work of local artist Jeana Castelli was donated to the high-care support and respite accommodation facility.

The generous donation was made by Radiowest presenter Cliff Reeve. He had won the artwork, depicting Bunker Bay, as a raffle prize.

Cliff, an avid music collector, said: “I just didn’t have anywhere to display the painting which would do it justice, and I thought a community group might be able to benefit from it.”

Treendale Gardens hosted a morning tea in September where Cliff, his wife Lynnee, and Jeana presented the painting to MSWA’s CEO, Marcus Stafford.

Marcus said: “The kind of accommodation that we offer at Treendale Gardens is state-of-the-art and tailor-made to help people with multiple sclerosis and other neurological conditions.

“We’ve created an environment that’s as personal and as comfortable as a much-loved family home, so this painting will just add to that.”

The painting, worth around $1,300, now takes pride of place on the wall of the entry foyer.

MSWA Online ShopSupport Western Australians living with MS, and check out our online store. All the merchandise is ‘Stand Up to MS’ branded including t-shirts, caps, travel mugs and more. Also available for sale are Entertainment Books and Bosko, the MSWA mascot.

All money raised will help people living with MS in three major ways; funding research projects to better understand the causes of MS, and ultimately find a cure, providing professional healthcare services and delivering the best quality accommodation for those who need 24/7 care.SH

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Albany Outreach News

Southside Outreach News

Bunbury Outreach News

This year we have enjoyed outings away from the normal Friday meetings at Lotteries House. In May, we held a lunch at Phillips Brook winery to thank volunteers and participants for helping with the last Swim for MS. The food and wine were great and the venue is equipped for people with disabilities. It was a great change of scenery.

A social lunch at the Gar Heng Chinese restaurant in June was also enjoyed by around 16 Members and friends. Many took home the leftovers after the huge and delicious meal. The restaurant has facilities for the disabled and parking close by. They also provided great service and is well worth a try.

In October, 20 Members, partners and staff attended a Camp Fire lunch at Judy and Geoff’s picturesque place. Whilst the weather was not ideal, the rain held off long enough for Chef Ken to cook up a superb meal in the camp ovens. IGA North Road donated the vegetables and fruit, whist Drovers provided the meat at a good price.

Fundraising efforts in July were greatly appreciated by our former President, Rob Cridge. The group held street appeals at IGA York St and raised $1,956. The money will go towards Rob’s quest for the Olympic sailing team for the disabled, made up of Great Southern sailors. We wish them all well.

“It’s a Knockout” was held in the Great Southern for the first time and a great time was had by all who participated. Some are already keen for next year, so it looks like the challenge is on to improve for next time.

If you live in the Great Southern and would like to receive updates by email, contact us on [email protected] and we can add you to our address book.

The wait is over! Southside Outreach Group has a new home! The move took place over two weeks and went very smoothly, thanks to the hard work of our wonderful staff and volunteers.

A farewell buffet lunch at our old premises, Seabrooke House, was attended by over forty people, including our favourite AFL player and MSWA Ambassador, Josh Kennedy. What a delightful young man – genuinely interested in listening to our stories and posing for photographs. Thank you Josh!

We also have a new trophy on the shelf! Southside won the “Best Team” award at the most recent “It’s a Knockout” competition against the other Outreach Groups and the accommodation residents. It was a very exciting and fun day with lots of laughs!

Our freshly painted new home is at least one third larger in area. Physiotherapist, Sharon and her team now have more than enough room to swing several cats around (or Members in wheelchairs). Along one wall of the physio room, there are two small rooms which have been purpose-built for massage. There’s a meeting room, huge office space, a reception area and a very spacious general purpose room for dining, games, crafts etc. To top it all off, it’s air-conditioned throughout! Rosalie, along with volunteer, Linda, are very pleased with the new kitchen which is equipped with two fridges and a brand new stove.

Finally, a big welcome to our two new volunteers, Linda and Annette. Thanks for giving up your time to help our Members. It’s also good to see Barry returning to the fold. He and Ron are off shortly to Treendale for a well-deserved break.

It has been busy here in the South West. Sumit and Dawn came down to help the Bunbury MadcowS complete their games for the “It’s a Knockout” competition. It was exciting to receive a trophy for 3rd place. We have our eyes on the top prize next year!

We had our last of the Susie’s Soup kitchens for the year with some lovely homemade contributions. The group held a fundraising sausage sizzle at Bunnings with the help of Members, their families and some wonderful volunteers. DBC Butchers donated sausages and after all the laughs and generosity, we raised nearly $1,800. We cannot thank those who organised the day and volunteered their time enough.

Also, with the change of seasons comes the resumption of our participation in the Rotary Sail into Life Program. The weather was perfect for our first day on the water. We had a record turnout, not just for the group, but also for the Sail into Life Program.

Finally, we are wishing a happy and travel filled retirement to our physio assistant Sandra.

If you would like to enquire about our Bunbury Outreach Group or services in the area, please call us on 9791 2472.

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Documents

The Official Magazine of the MS Society of WA | mswa.org · The Official Magazine of the MS Society of WA | mswa.org.au Summer 2014 Mental health is not a dirty word! The importance