MS Life Summer 2014 by MS Queensland

MSLIFE. MS SUMMER 2014

QUEENSLAND’S PREMIER MAGAZINE FOR PEOPLE LIVING WITH MS

ANNA’S POSITIVITY SHINES THROUGH

ThE LAUNch oF

MS ATLAS A

hIGhLIGhTS MS woRLDwIDE woRLDw RLD IDE RLDw The most comprehensive collection of information about MS worldwide

pg. 05

pg. 09

pg. 13

Annual Report now available

New after-hours program starts February

Save the date MS Brissie to the Bay 2014

LETTER FRoM ThE EDIToR

MS Queensland’s

chRISTMAS RISTMAS TRADING hoURS

Dear readers, Well it’s Christmas time again – I can’t believe how quickly this past year has gone. While we saw an incredible first six months of the year in terms of fundraising events, the last six have been very productive in our efforts to raise even more money to support people living with MS. Recently, we held our record-breaking 15th annual MS Moonlight Walk, MS Swimathon events in Toowoomba and Jindalee, and hosted our second annual MS Queensland Conference and AGM. And we aren’t settling down yet. Our staff are already working on a number of events and projects for 2014 that are sure to keep the MS community busy for another year! The MS Moonlight Walk this year raised an amazing $500,000 – that’s $150,000 over our original fundraising goal, and it’s all thanks to you, our great MS community who are constantly inspiring and helping us reach new heights for people living with MS. This edition of MS Life features Anna Wingrove on the cover who was diagnosed with MS at the age of 24. Since her diagnosis, Anna has faced a number of challenges, yet embraces positivity and has continued on to finish her financial planning degree. With the support of her family and boyfriend Matthew, Anna has participated in the MS Moonlight Walk each year, travelling from the Gold Coast rain, hail or shine. Other stories in this edition include a wrap up of our recent Annual Conference and AGM (page 4), planned after-hours physiotherapy programs for 2014 (page 9) and information on MS relapses (page 18). As always, if you have any feedback about this edition of MS Life please don’t hesitate to get in touch by emailing me at mslife@msqld.org.au MS LIFE – SUMMER 2014

Kindest regards cassie, Editor, MS Life

The MS Queensland offices across the State will be closed over Christmas from midday Friday 20 December 2013 and will reopen on Monday 6 January 2014 inclusive. If you are having any issues or concerns with your MS during this period, please contact your local GP or closest hospital emergency department in the first instance. Our Psychologist Aart Simons will also be available for any urgent client support during this time.

LETTERS To oUR MANAGER oF SPEcIALIST EDUcATIoN, TIM If you have an MS-related question to ask our Manager of Specialist Education, Tim to answer in the next MS Life, please email Tim at mslife@msqld.org.au before 13 January 2014.

If you’d like to stay in touch with MS Queensland’s activities, events and physiotherapy programs visit: www.facebook.com/msqld www.twitter.com/#!/msqld

youtube.com/user/MSAustraliaQ www.msqld.org.au

www.msqld.org.au

To make a donation to MS Queensland or for more information on what we do please email mslife@msqld.org.au or call 1800 287 367 or visit www.msqld.org.au Acknowledgement: We wish to thank Anna Wingrove for the use of her image on the cover of this publication. Photo by Ryan Smyth Photography.

CONTENTS SUMMER 2014

what a year it has been! Looking back on the last 12 months, MS Queensland has been very busy doing whatever we can to help people living with MS to get the best out of life; to advocate for change; and to search for a cure. Highlights of the past year include: • celebrating 55 years of service to the MS community • making 6,560 contacts with people living with MS • achieving 8% growth in new client registrations • making 1,560 home visits by our RSC team • conducting 23 MS workshops and information sessions for 380 people across 16 locations across the State • making five submissions to government enquiries • building and launching a new website • contributing $258,665 towards MS research • marking 25 years of our highly successful MS Limited Edition Art Union • holding our biggest ever fundraising events: MS Brissie to the Bay (5,800 participants) and MS Moonlight Walk (3,144 participants) • commencing the implementation of new IT systems across the organisation Even before the dust has settled on this year’s activity, we’re looking ahead to what we want to deliver in the coming 12 months. We’re excited about opportunities to rollout new housing solutions for people living with MS, expand our MS workshops and information sessions, help fund a Vitamin D research trial, and increase our influence with decisionmakers, particularly amongst our government leaders. Above all, next year promises to take us one step closer towards our vision of a world free from MS and its devastating impact. Thanks for your continued support on this journey.

coVER SToRY ove Anna Wingr

PAGE 2–3

Letter from the Editor From the CEO

PAGE 4–5

Annual Conference and AGM wrap up People with MS support groups Queensland Forum Annual Report is available Membership – join today

PAGE 6-7

Redlands step-by-step exercise group Youngcare grants Canapes and Canvas helps READY program

PAGE 8-9

A focus on self-management After-hours aquatics and pilates How Kathy lives positively with MS

PAGE 10-11 Anna’s positivity shines through PAGE 12–13 Events that help people living with MS PAGE 14–15 Client in focus Leaving bequests Do you know an MS Angel? PAGE 16–17 A new government and a name change back to NDIS Advocacy with Natalie The launch of MS Atlas PAGE 18–19 MS questions with Tim MS resources MS Support Groups update PAGE 20

Lincoln, CEO

Anna’s positivity shines through Pages 10–11

2014 Calendar of events

MS LIFE – SUMMER 2014

FRoMthe CEO

ANNUAL

CONFERENCE

&AGM WRAP UP

PEOPLE WITH MS SUPPoRT GRoUPS QUEENSLAND FoRUM SUPPoRTED BY ANN LANGLEY SchoLARShIP

THIS YEAR’S ANNUAL CONFERENCE WAS HELD on 8 noveMBeR aT The SouThBank InSTITuTe OF TECHNOLOGY.

Following our inaugural half day conference in 2012, the program featured special guest presentations from National Disability Services’ NDIS Coordinator Deborah Hoffman, MS Research Australia’s CEO Dr Matthew Miles, and Professor Michael Pender from the University of Queensland. For those who were unable to attend this year’s Conference, we have released our 2012–13 Year in Review video on our YouTube channel www.youtube.com/user/MSAustraliaQ

We would like to thank all members for their interest and attendance at this annual meeting and look forward to building further upon the success of the past year in the months ahead. To help us improve on the Conference and AGM next year, please provide your feedback (good or bad) to us at mslife@msqld.org.au

MS LIFE – SUMMER 2014

By being a member of MS Queensland you are able to support the services we provide and the research projects we fund. To become a member for just $33 a year, simply call 07 3840 0888 or visit www.msqld.org.au to complete the application form.

what an inspirational time it was bringing together 27 members of People with MS Support Groups Queensland (PwMSQ) for the inaugural State-wide Forum on Thursday 7 November in Brisbane. In memory of unique and dynamic MS Advocate Ann Langley, a scholarship was established in Ann’s name to provide funding to enable one person from each PwMSQ Support Group to come to Brisbane to meet and share ideas, to be encouraged and to find new ways of meeting the needs of people with MS through the PwMSQ Support Groups. The 27 attendees wasted no time in getting to know each other, travelling from Cairns to the Gold Coast, out west to Toowoomba and everywhere in between! As we know each support group is unique and follow different styles and formats (some don’t call themselves a ‘Support Group’). They shared how they formed around interests such as keeping fit, social outings and education – but the themes of friendship, mutual support and coffee! were common to all groups. The passion, care and commitment by PwMSQ Support Groups for people living with MS in their local communities was evident to everyone. Hosted by Chairperson PwMSQ Support Groups, Jenni Saunders and MS Queensland CEO Lincoln Hopper, the first day of the Forum concluded with an evening meal joined by MS Queensland Board members, including Chairman Jon Loraine who publically acknowledged the great work of the support groups. A question and answer session brought out new ideas to invigorate the PwMSQ Support Groups and the tough issue of engaging people living with MS who do not wish to connect with a support group was also discussed. MS Queensland is looking forward to continuing the energetic conversation that came of the inaugural PwMSQ Support Group Forum. If you would like more information regarding PwMSQ Support Groups, please contact Director of Services Karen Quaile on 07 3840 0840.

our journey TOWaRds a WORld fRee fROm mulTiPle scleROsis TOW

www.youtube.com/user/msaustraliaq

our journey ToWArDS A WorLD Free FroM MuLTIPLe SCLeroSIS

REPORT

2012–13 AnnuAL rePorT

eensland

02 51

ANNUAL

ms queensland 2012–13 annual RePORT

15/10/13 12:04 PM

our JourNEY

oUr vALUEs

ENGAGING our STAFF

our STrATEGY

During 2012–13 we conducted our second annual “Engaging our People” survey using external research company, Best Practice Australia (BPA). The survey was the first opportunity, since the release of our 2020 Strategic Plan, to bring staff together to work on our organisational culture and performance. The results provided a good idea of where we stand as a whole, and a gauge of where we need to focus on in the coming year.

our new organisational values, which we all strive to live by, are:

1 That we retain quality staff.

1 respect: people really matter to us and so we show

By definition, multiple sclerosis means “many scars.” MS is best described as a progressive neurological condition where the immune system of a person with MS appears to attack myelin; a protective coating around nerves that allows them to transmit signals through the central nervous system.

MS Queensland works closely and collaboratively with our national research arm, MS research Australia, and provides funding towards MS research Australia’s research effort. During 2012–13 we contributed a total of $258,665 to MS research; 57% of this figure to the MS Clinic in Brisbane and 43% to MS research Australia.

These attacks in the brain, optic nerve and spinal cord cause scarring that disrupts these signals and can even damage the nerves themselves.

rESEArCH STrATEGY

The symptoms of MS are varied for each individual and can include loss of balance, fatigue, vision impairment, cognitive issues, abnormal speech and muscle weakness. No two examples of the disease are the same.

MS research Australia implements an informed scientific agenda to accelerate advances that will prevent, better treat and ultimately cure MS. This agenda focuses on funding research and facilitating collaborations that will increase our understanding of the biology of MS, develop methods for preventing the disease and uncover ways to repair existing damage and reverse the disability caused by MS. MS research Australia also supports social and applied research to investigate issues of practical importance to the lives of people with MS, such as social impact, employment and symptom management. MS research Australia focuses on the strengths of Australian researchers to contribute to the worldwide endeavour to solve and support MS. This is a medium to long-term strategy.

there is no known cure for ms. The good news is that much is being done in MS research, especially in Australia, into the causes of the disease in a global effort to ultimately find a cure.

IN 1972

Each year MS research Australia funds high quality MS research in universities and medical research institutes across Australia through project grants, scholarships and fellowships. In 2013, $2.14 million in funding was awarded to 14 exciting new grants including the following in Queensland: Professor Michael Pender, university of Queensland Total funding awarded: $390,000 Duration: 3 years

2 how genetic risk factors for ms affect the function of

1 Maintaining independence in order to live a full and happy life

immune cells in ms Dr Margaret Jordan, James Cook university Total funding awarded: $299,564 Duration: 4 years

for as long as possible.

2 The capacity to stay in employment due to MS symptoms or lack of understanding from employers.

3 PrevANZ

3 Access to appropriate services in the local area, particularly for

IN 1958

Steering committee, clinicians and researchers from Australia and New Zealand Total funding awarded: $2.7million Duration: 5 years

regional and rural people with MS.

4 The effect of MS on family and loved ones, especially if members of the family are carers.

5 Lack of financial means to cope with the need for equipment and aides if their condition deteriorates.

15 MS QuEENSLAND | 2012 –13 ANNuAL rEPorT MS1210_AnnualReport13_Book.indb 15

The Multiple Sclerosis Society of Queensland is established by Mathers Shoes founder, Mr Bill Mathers whose wife lived with MS.

15/10/13 12:03 PM

An electronic version of the report can be downloaded from our website www.msqld.org.au

We purchase our first property in Dutton Park, Brisbane with the vision of creating an MS centre, made possible by an interest free loan by Bill Mathers.

organisation and for each other.

is by working together.

In our 2013 staff survey, we measured for the first time how these values are understood and seen in the organisation. We found that a majority of staff felt strongly about demonstrating the values in their everyday working environment and this gives us confidence in the health and direction of the workplace culture at MS Queensland. We’ve committed to measuring the impact of these values as part of our annual strategic review.

MS1210_AnnualReport13_Book.indb 56

We open Granston Lodge, a 32-person care facility at Dutton Park for people living with MS.

IN 1984 We appoint Trevor Farrell as Executive Director after Trevor Hinwood retires.

1980

We purchase a holiday home on the Gold Coast to provide respite accommodation for families living with MS. The home was later named McKinnon House and continues to operate today.

15/10/13 12:03 PM

IN We help launch the MS Readathon,, a national school-based fundraising reading program that teaches students about MS and raises vital funds to support Australians living with the condition.

IN 1973 IN 1964

4 collaboration: we believe the way to achieve great results

opportunities.

our first sporting fundraiser, the MS Brissie to the Bay bike ride, becomes our flagship fundraising event with 1,000 cyclists riding from Brisbane to Manly in the first year.

IN 1974

19601970

1950

1 Immune control of Epstein-Barr virus in ms

ToP 5 CoNCErNS For PEoPLE LIVING WITH MS IN QuEENSLAND

long it takes or how challenging the situation.

3 commitment: we always do our best for our clients, our

5 That we provide good development and career

IN 1994

our first fulltime Executive Director, Trevor Hinwood is appointed to run the organisation.

rESEArCH ProJECTS IN AuSTrALIA The above image is a depiction of the protective myelin sheaths, that surround the nerve cells of the brain and spinal cord, being attacked (a process called demyelination). This results in damaged areas that are unable to transmit nerve impulses.

2 hope: we never give up offering real hope, no matter how

3 That we recruit quality staff. 4 That we address job security issues.

The report is special in its own right and marks our 55th anniversary year serving people living with MS. It explains how we raise our money and how we spent it on providing vital services for people with MS during the year. Once again the report shares the lives of people living with MS, at various stages of their diagnosis and highlights our commitment to continuous funding of MS research in Australia.

respect in all our relationships and interactions with others.

2 That we address pay issues.

IN 1976 We support the first MS scholarship for ‘research in MS by trainee medical practitioners’ at the Medical Faculty of the university of Queensland. MS MEN’S LuNCH

our JourNEY

oUr coNtrIBUtIoN to ms rEsEArch

our PEoPLE

ToP 5 ISSuES THAT MATTEr To our STAFF ArE : *

B ILA

ms: thE mystEry DIsEAsE

We held a number of workshops led by our CEo with staff from across the organisation. From a list of 30 nominated values we narrowed it down to four and developed a comprehensive list of behaviours to help guide staff and volunteers live out the new values.

staff want to improve the way things work in the 75% oforganisation; up from 60% the previous year.

oUr AchIEvEmENts ovEr 55 yEArs

our FuNDING

previous year.

of our staff believe MS Queensland is a truly great 70% place to work; up from 54% the previous year.

our GoVErNANCE

No w A VA

This Year MS Queensland celebrates 55 years of service to the MS community in Queensland. over the past five decades we have introduced and delivered invaluable care and support services for people living with MS including physiotherapy, immunotherapy and nursing support, education and information, accommodation and respite, regional service coordination, counselling and financial support. As research into the causes of MS continues, and new treatments to stop the progression of MS are introduced, it’s pertinent to reflect on our past. But we’re also looking forward, with hope, to a world that is one day free from MS and its devastating impact.

To support our new vision, mission and purpose detailed in the 2020 Strategic Plan, our staff developed some core values and workplace behaviours that would help them, and our volunteers, work effectively together.

our staff who completed the survey are 65% of‘engaged’ with the organisation; up from 50% the

STAFF DEVELoPMENT ($88k in 2011–12)

our FINANCIAL PErForMANCE

We’re proud to share that our 2012–13 MS Queensland Annual Report is now available. Last year’s report received a number of industry awards and this year’s report is better than ever.

our PErForMACE

We achieved a response rate of 79% with 99 employees completing the survey. This puts us in the top quartile of organisations in the Non-Profit Health and Community Services Sector and we are confident the results were representative of all employees. We improved on the previous year’s survey in the areas of trust; having a can-do mentality; being a truly great place to work; having intrinsic motivation; and a workplace free from favouritism and harassment.

MS CYCLE DE FrANCE

This year’s Annual Report is even more impressive. It’s beautifully designed and full of excellent content.” MS1210_AnnualReport13_Book.indb 5

our PErForMACE

June 2013 saw the launch of the MS Cycle de France, where a group of 11 committed cyclists endured a five-day cycling tour through the French Alps. The team rode more than 525km from Archamps to Monte Carlo via the Col du Galibier, Col de 15/10/13to 12:03 PM la Bonette and many other ‘classic climbs’, raising $81,758 fund life-changing physiotherapy services.

MS QuEENSLAND | 2012 –13 ANNuAL rEPorT

CoMMuNITY FuNDrAISING During the year our incredibly dedicated community fundraisers across Queensland worked together to raise $200,650 in donations through community-run initiatives. This was a 27% increase on 2011–12.

‘rIDING For PEoPLE WITH MS WAS So HuMBLING’

our PEoPLE

our FuNDING

If you would like a copy emailed to you directly, please contact us at mslife@msqld.org.au or if you would prefer a hard copy posted to you in the mail (within Australia) please contact us and include your full name and postal address.

our STrATEGY

our annual corporate KPMG MS Men’s Lunch was successful, however net income was 13% down on budget. This has been attributed to fewer prize sponsors, low levels of growth in attendee numbers and increasing costs.

our GoVErNANCE

Jonathan Loraine, Chairman

Jonathan Loraine

secretary (appointed 9 November 2011)

chairman Board Member since 2002

Vice Chair of Queensland Disability Network. Former medical secretary, journalist and instrumental music teacher. Long-time community, arts and disability activist in Mt Isa, Townsville, roma and Brisbane. Person with MS.

Previous Chairman of Energex Limited (2006 – 2012), Non-Executive Director dual listed Company, Ceramic Fuel Cells Limited. Graduate Member of AICD, Ambassador Queensland Museum.

Director of resources and energy investment firm XLX. Extensive experience in corporate finance. Member of the Institute of Chartered Accountants (ICA).

meeting attendance

Board

Chief Executive officer of MS Queensland, held previous Directorships of ACoSS, Mission Australia Early Learning Services, Mission Australia Housing Ltd and Many rivers Microfinance. Holds post graduate qualifications in Commerce. Member of AICD.

Board

Development and Finance Committee

meeting attendance

Partner in corporate advisory firm Neuchatel Partners, Chairman and founder of resources services company Core resources Pty Ltd and Chairman of the Cooperative research Centre for optimising resource Extraction based at the university of Queensland. Director of MS Australia. Member of AICD.

Development and Finance Committee

risk and Audit Committee

Services Committee

mANoLI ArchoNtoULIs

risk and Audit Committee

30 YEArS oLD LIVING WITH MS For 6 YEArS

Manoli wants to let other young MS sufferers know that life doesn’t come to a halt following diagnosis. “There is a false perception of MS, that you’re in a wheelchair for life, but I want to show people that is not the case. Exercising has helped me stay strong. Knowing that I can still go out and exercise and stay healthy and active helps me manage my MS. By taking on the challenge of Cycle de France, I’m hoping to show others that MS is not a life sentence.” Manoli’s outlook wasn’t always so positive, especially after he was diagnosed with MS shortly before his 24th birthday. As someone who was always full of life, he admits to having periods of self-doubt. “I was left wondering why me.”

MS1210_AnnualReport13_Book.indb 73

meeting attendance

Development and Finance Committee

Board

risk and Audit Committee Services Committee

our JourNEY our STrATEGY

350

Government Funding Client Services Expenditure

4,000

300

200

100 08–09 09–10 10–11 11–12 12–13

08–09

09–10

10–11

11–12

12–13

13–14 Projected

our Special Purpose Financial report for the 2012–13 financial year is available in full from our website www.msqld.org.au

MS1210_AnnualReport13_Book.indb 76

15/10/13 12:03 PM

Development and Finance Committee risk and Audit Committee

LIFE

Autumn Edition 2009

LIFE

Queensland

AUTUMN 2012

QUEENSLAND

QUEENSLAND’S PREMIER

Giving life back

MAGAZINE FOR PEOPLE

MS Life

LIVING WITH MS

Winter 2011

LIFE

MS QuEENSLAND | 2012 –13 ANNuAL rEPorT

He was diagnosed with MS following two severe attacks, experienced numbing sensations and loss of control down both sides of his body which also affected his vision. He also suffered from severe banding sensations across his stomach which often left him curled up in pain.

MS1210_AnnualReport13_Book.indb 65

“It was a shock to be told I had MS at such as young age.” He recognises that not people living with MS have the same mobility as him, but believes there are many benefits to keeping mentally fit as well as physically active. “There is a massive mental component to this. Every time I get on the bike when I’m training, it builds self-belief. It helps in keeping my mind strong. You never forget that you have MS, it becomes an everyday thing, but that has made me appreciate life even more.

15/10/13 12:03 PM

for brissie to the bay

MSLIFE. MS Life AUTUMN 2012

QUEENSLAND’S PREMIER

Giving life back

11 12

CEO’s Desk

How a young mum won’t

let MS hold her back EMPLOYMENT AND

pg. 8

Nominate your MS Hero

Working with MS Workshops

pg. 12

MS AWARENESS WEEK

See how Queensland took part in World MS Day celebrations this year

pg. 15

One man’s struggle Living Positively against the odds with MS

MS AND SES

Read about the lip smacking campaign that had everyone talking about MS

Winter 2011

Services to

support you

& taking control

9 10

Learn what Mayor of Ipswich Paul Pisasale feels about employment and MS

Employment Power

LOUISA ON A MISSION

How a young mum won’t

Multiple Sclerosis Society of Queensland Locked Bag 370 Coorparoo DC QLD 4151

LIFE

let MS hold her back EMPLOYMENT AND

pg. 8

Nominate your MS Hero

Spring Edition 2009

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Beea_d] 7j B_\[ J^hek]^ :_\\[h[dj ;o[i

Working with MS Workshops

pg. 12

MS CLINIC CONVERSATIONS

In depth answers to the most frequently asked MS questions

Ambassador, National Panel Horse Judge and person with MS

WORLD MS DAY

GET PHYSICAL

How you can help the global campaign on employment and MS

Brisbane’s biggest charity its biggest ever event

Bruce Milligan

LIFE AT ANNERLEY... of Queensland

Spring 2010

Gilenya is the first oral treatment for relapsing remitting MS to become available on the PBS ®

TREVOR FARRELL: GIVING LIFE BACK

Giving back independence

A new framework to expand and strengthen the MS support group network

Multiple Sclerosis Society

of Queensland

286 Gladstone Road Dutton Park QLD 4102 Locked Bag 370 Coorparoo DC QLD 4151 ABN 56 731 473 412

MS Life

MS AND SES

VIRAL MS CAMPAIGN Learn what Mayor of Ipswich Paul Pisasale feels about employment and MS

B_l_d] M_j^ CI 3P]PUN >P[O 4:

MS Life

QUEENSLAND

Spring 2010

MS Australia – QLD

Questions about MS?

We’ve got the answers you’re looking for

BREAKTHROUGH MS RESEARCH

Phone: 07 3840 0888 Fax: 07 3840 0813 Email: mssociety@msqld.org.au www.msaustralia.org.au/qld

ORAL TREATMENT JOINS PBS

Scientists have identified the major common genetic variants that contribute to the cause of MS

Gilenya is the first oral treatment for relapsing remitting MS to become available on the PBS ®

TREVOR FARRELL: GIVING LIFE BACK

Life at Annerley.... COMPLETED!

Giving back independence

Meet one of the most inspiring people living with MS in Queensland, Mayor of Ipswich Paul Pisasale

MS Life

QUEENSLAND

Giving life back

Kate finds her dream job FOR THE CAUSE

BOB AND KAREN’S LOVE

Winter Edition 2009

A YEAR OF EMPLOYMENT

and dignity

MS brought

us together!

Q&A WITH MAYOR PAUL PISASALE

We celebrate the end of an era as Executive Director Trevor Farrell prepares to retire after nearly 30 years

LIFE

MS Australia – QLD

Winter 2010

PwMS Josie Montano helps during Queensland’s floods and cyclones

“MS has been very challenging. Not one to who are worse off. I love do my life things by halves, I will set and I look forward to everything off hiking the snowfields in that life offers. NZ, snorkelling with sharks I look at MS as a rewarding and turtles in Port Douglas, challenge and not a disability. and cruising the Coast on a is an acceptance of whatever It Harley…as a passenger. cards are dealt to you in this Then without announcement, life. It is your choice on how you I can be back as the resident are going to manage that hand. celebrity in hospital learning I guess I look at life through to walk again. different eyes these days and tend to live in the moment. I have managed this condition through positive Just before Sophia’s fifth birthday thinking, meditation, pilates, (she is 10 now), my Mum Sharon and Sophia Ball asked with swimming, diet and an her what her three birthday their puppy Millie amazing amount of love wishes were. She stated and that friendship. I had been totally she “would LOVE a violin, drug free for 7 years a opting for natural therapies. poodle puppy…but most of all Grandma I would However after much resistance, in 2001, I went love a cure for MS and that Mummy’s legs would on injection treatment which can lessen the severity work properly again”. She received the violin of relapse. and recently Millie the poochon puppy, and is still waiting for the gift of a cure. I am 41 now, lived with MS for and I am aware of the realitiesover 12 years of this condition, understanding that the time may come when it could worsen. Maybe through diligent management, it won’t. I am praying that it won’t. When life hands you a bag of lemons – you simply go make lemonade!”

I was totally needle phobic and now I inject myself daily: I am up to about 2000 injections so far! I have learnt to walk from scratch about 16 times and have been blind twice. MS has been a gift to me as it has given me a sense of urgency about life, encouraging me not to procrastinate about what I would like to do one day. I definitely do not want pity…there are many people

Summer Edition 2009

MS Australia – QLD

MS gene discovery

MS SOCIETY OF QLD PURCHASES PARTIALLY COMPLETED TOWN HOUSES AS PART OF LIFE OPTIONS

PwMSQ

Meet the Queenslanders supporting MS research and regional services

STORY

MS Australia – QLD

Summer 2011

LIFE AT ANNERLEY...

dream job FOR THE CAUSE

BOB AND KAREN’S LOVE

MS Life

WHAT A YEAR IT HAS BEEN FOR MS WORLDWIDE

MS AWARENESS WEEK

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and dignity

MS brought

Meet one of the most inspiring people living with MS in Queensland, Mayor of Ipswich Paul Pisasale

Winter Edition 2009

QUEENSLAND

The official launch

McKINNON HOUSE

Brisbane’s biggest charity

Spring 2011

Summer edition 2009

CEO’s Desk 2 Life Options 3 Ian’s Story 4 In Memory of John 5 Reading for the Family 6 Storming Parliament 8 Events 9 Research Breakthrough 10 MS Book Reviews 12

us together!

Q&A WITH MAYOR PAUL PISASALE

We celebrate the end of an era as Executive Director Trevor Farrell prepares to retire after nearly 30 years

LIFE

Giving life back

BRISSIE TO THE BAY

The link between exercise and quality of life for people with MS

MS Life

QUEENSLAND

Life at Annerley.... COMPLETED!

MS gene discovery ORAL TREATMENT JOINS PBS

Phone: 07 3840 0888 Fax: 07 3840 0813 Email: mssociety@msqld.org.au www.msaustralia.org.au/qld

GET PHYSICAL

How you can help the global campaign on employment and MS

LIFE

MS Australia – QLD

Questions about MS?

We’ve got the answers you’re looking for

MS SOCIETY OF QLD PURCHASES PARTIALLY COMPLETED TOWN HOUSES AS PART OF LIFE OPTIONS Multiple Sclerosis Society

MS Life

QUEENSLAND

A YEAR OF EMPLOYMENT AND MS

Australian of the Year WORLD MS DAY

B_l_d] M_j^ CI 3P]PUN >P[O 4:

Summer Edition 2009

286 Gladstone Road Dutton Park QLD 4102 Locked Bag 370 Coorparoo DC QLD 4151 ABN 56 731 473 412

MS CLINIC CONVERSATIONS

In depth answers to the most frequently asked MS questions

MS has been a gift to me as it has given me a sense of urgency about life, encouraging me not to procrastinate about what I would like to do one day. I definitely do not want pity…there are many people

Jonathan Loraine and

LIFE

MS Australia – QLD

Read about the lip smacking campaign that had everyone talking about MS

KdajbZ (! 6j\jhi '%%+

MS Australia – QLD

Autumn 2011

Giving life back

2nd Annual MS National Advocates Conference

Storming Parliament House for MS

I was totally needle phobic and now I inject myself daily: I am up to about 2000 injections so far! I have learnt to walk from scratch about 16 times and have been blind twice.

BRISSIE TO THE BAY

The link between exercise and quality of life for people with MS

Summer edition 2009

CEO’s Desk 2 Life Options 3 Ian’s Story 4 In Memory of John 5 Reading for the Family 6 Storming Parliament 8 Events 9 Research Breakthrough 10 MS Book Reviews 12

See how Queensland took part in World MS Day celebrations this year

pg. 15

One man’s struggle Living Positively against the odds with MS

LIFE Queensland

QUEENSLAND

>c &..(! a^[Z lVh \ddY# H]Vgdc 7Vaa! i]Zc '-! ]VY _jhi gZijgcZY [gdb ]Zg lZYY^c\ VcY ]dcZnbddc ^c i]Z <gZZ` >haVcYh VcY lVh ldg`^c\ Vh FjZZchaVcY BVcV\Zg [dg V gZXgjîbZci XdchjaiVcXn# I]Zc BjaiêaZ HXaZgdh^h higjX`# Lî]^c bdci]h d[ ]Zg [V^gniVaZ lZYY^c\! H]Vgdc lVh an^c\ ^c ]dheîVa jcVWaZ id bdkZ [gdb i]Z cZX` Ydlc# >c i]Z nZVgh h^cXZ! H]Vgdc ]Vh ZcYjgZY cjbZgdjh hZg^djh BH ViiVX`h! Wji h]ZÉh cdi VWdji id aZi ]Zg BH \Zi ^c i]Z lVn d[ a^k^c\ a^[Z id îh [jaaZhi# =Zg edhî^kZ djiadd` ]Vh ^che^gZY ]Zg YVj\]iZg Hde]^V! V NZVg * hijYZci Vi 6h]\gdkZ HiViZ HX]dda! id ZcXdjgV\Z ]Zg [Zaadl hijYZcih id eVgi^XêViZ ^c i]Z BH GZVYVi]dc VcY ]Zae gV^hZ [jcYh id hjeedgi gZhZVgX] ^cid V XjgZ [dg BjaiêaZ HXaZgdh^h# Hde]^V ^h dcZ d[ FjZZchaVcYÉh ]^\]Zhi BH GZVYVi]dc [jcYgV^hZgh# I]^h nZVg! h]Z VcY ]Zg bdi]Zg \VkZ V heZX^Va egZhZciVi^dc id i]Z hX]dda VhhZbWan id ZcXdjgV\Z di]Zgh id _d^c ^c i]Z fjZhi id ÈgZVY [dg V gZVhdcÉ# >c i]^h ZmXZgei [gdb ]Zg heZZX] id i]Z eg^bVgn hX]dda hijYZcih! H]Vgdc ZmeaV^ch l]Vi îÉh a^`Z id a^kZ lî] BH Ä VcY ]dl BH ]Vh ^che^gZY ]Zg id a^kZ a^[Z id i]Z [jaa# “MS has been very challenging. Not one to who are worse off. I love do my life things by halves, I will set and I look forward to everything off hiking the snowfields in that life offers. NZ, snorkelling with sharks I look at MS as a rewarding and turtles in Port Douglas, challenge and not a disability. and cruising the Coast on a is an acceptance of whatever It Harley…as a passenger. cards are dealt to you in this Then without announcement, life. It is your choice on how you I can be back as the resident are going to manage that hand. celebrity in hospital learning I guess I look at life through to walk again. different eyes these days and tend to live in the moment. I have managed this condition through positive Just before Sophia’s fifth birthday thinking, meditation, pilates, (she is 10 now), my Mum Sharon and Sophia Ball asked with swimming, diet and an her what her three birthday their puppy Millie amazing amount of love wishes were. She stated and that friendship. I had been totally she “would LOVE a violin, drug free for 7 years a opting for natural therapies. poodle puppy…but most of all Grandma I would However after much resistance, in 2001, I went love a cure for MS and that Mummy’s legs would on injection treatment which can lessen the severity work properly again”. She received the violin of relapse. and recently Millie the poochon puppy, and is still waiting for the gift of a cure. I am 41 now, lived with MS for and I am aware of the realitiesover 12 years of this condition, understanding that the time may come when it could worsen. Maybe through diligent management, it won’t. I am praying that it won’t. When life hands you a bag of lemons – you simply go make lemonade!”

2nd Annual MS National Advocates Conference

Storming Parliament House for MS

Jenni

MS Australia – QLD

3 4 5 6 7 8

An 11 year old’s idea... MS Readathon

VIRAL MS CAMPAIGN

PwMS Josie Montano helps during Queensland’s floods and cyclones

LIFE Queensland

KdajbZ (! 6j\jhi '%%+

Autumn 2011

Giving life back

LIVING WITH MS

Brissie to the Bay Introducing Facebook Portrait of Posterity Work of Aart Lynette Walks Again

“We Have MS,

LIFE

Events

Employment Power

Lisa & Sandy tell...

Spring Edition 2009

QUEENSLAND

MAGAZINE FOR PEOPLE

THIS ISSUE

& taking control

8 9 10

Ambassadors Needed Notice of AGM

3800 CYCLIST PEDAL FOR A CURE! Multiple Sclerosis Society of Queensland 286 Gladstone Road Dutton Park QLD 4102 Locked Bag 370 Coorparoo DC QLD 4151

NoT T A MEMBER?

Autumn Edition 2009

QUEENSLAND about MS this May

Services to

support you

5 6 7

Events An 11 year old’s idea... MS Readathon

New Record

Volume 3 Spring Edition, September 2008

2 3 4

Portrait of Posterity Work of Aart Lynette Walks Again

Services Committee

LIFE

Queensland

MS Australia – QLD

THIS ISSUE CEO’s Desk Brissie to the Bay Introducing Facebook

IT Systems Implementation Committee

our FINANCIAL PErForMANCE

250

150

2,000 0

our PErForMACE

400

6,000

Volume 3 Spring Edition, September 2008

The meetings the Board Member attended The meetings the Board Member did not attend

But this year, Manoli hit new heights as he tested his cycling skills on some of Europe’s highest mountain roads in the MS Cycle de France event – a 525km road ride through various stages of the 2013 Tour De France, in a bid to raise funds for MS Queensland.

Board

rESEArCH EXPENDITurE ($’000)

8,000

Summer 2011

PwMSQ

Meet the Queenslanders supporting MS research and regional services

STORY

MS Life

MS Australia – QLD

Winter 2010

A new framework to expand and strengthen the MS support group network

MS Australia – QLD

AT A YEAR IT

Vitamin D

The First Official

World MS Day

are you getting enough?

Our New MS Ambassadors LEIZA’S STORYp.3

MCKINNON HOUSE FOR RESPITE p.6

Lisa’s story of motherhood and MS

Educate, Motivate & Advocate

OUR PATRON

PREPARING FOR THE SUMMER HEAT p.7

Her Excellency Ms Penelope

LIFE

COMEBACK KID

Wensley AO

TABLET TALK

Geoff Huegill lends his support to MS, fresh from taking gold in Delhi

LET’S CRUISE

A look at new oral treatments for MS that offer more options

Helen Emery takes on the high seas in style with husband Graham

A GLOBAL MOVEMENT

How the world united with a common goal: to raise awareness of MS

QUEENSLAND

QUEENSLAND’S PREMIER

Giving life back

MAGAZINE FOR PEOPLE

COOLING REBATE

State Government introduces a new electricity rebate for low-income Queenslanders with multiple sclerosis

FEATURE STORY

P10

Debbie Smart was diagnosed with MS, but it didn’t stop her from moving to Africa to help vulnerable children

MS Life

LIVING WITH MS

Winter 2011

RESEARCH NEWS

JOIN TODAY!

MCKINNON HOUSE FOR RESPITE p.6

Lisa’s story of motherhood and MS

Educate, Motivate & Advocate

OUR PATRON

COMEBACK KID

Wensley AO

TABLET TALK

Geoff Huegill lends his support to MS, fresh from taking gold in Delhi

LET’S CRUISE

A look at new oral treatments for MS that offer more options

Helen Emery takes on the high seas in style with husband Graham

Debbie strives despite MS

MOONLIGHT WALK Over 1300 people take a stroll through Brisbane to raise money for MS

A GLOBAL MOVEMENT

QUEENSLAND’S PREMIER

How a young mum won’t pg. 8

Working with MS Workshops

pg. 12

Read about the lip smacking campaign that had everyone talking about MS

How a young mum won’t pg. 8

Nominate your MS Hero

Spring Edition 2009

LIFE

KdajbZ (! 6j\jhi '%%+

Beea_d] 7j B_\[ J^hek]^ :_\\[h[dj ;o[i Giving life back

P10

RESEARCH NEWS

P15

MS Research Australia provides you with the latest updates on MS research

MS Australia – QLD

Employment Power

LOUISA ON A MISSION

“We Have MS,

LIFE

Autumn 2010

QUEENSLAND

Giving life back

let MS hold her back EMPLOYMENT AND

pg. 8

Working with MS Workshops

pg. 12

worldMSday

“MS has been very challenging. Not one to do things by halves, I will set off hiking the snowfields in NZ, snorkelling with sharks and turtles in Port Douglas, and cruising the Coast on a Harley…as a passenger.

Activities happening all around the world! Find out how you can take

MS CLINIC CONVERSATIONS

WORLD MS DAY How you can help the global campaign on employment and MS

and person with MS

LIFE

MS Australia – QLD

LIFE AT ANNERLEY...

MS gene discovery TREVOR FARRELL: GIVING LIFE BACK

Phone: 07 3840 0888 Fax: 07 3840 0813 Email: mssociety@msqld.org.au www.msaustralia.org.au/qld

We celebrate the end of an era as Executive Director Trevor Farrell prepares to retire after nearly 30 years

Q&A WITH MAYOR PAUL PISASALE Meet one of the most inspiring people living with MS in Queensland, Mayor of Ipswich Paul Pisasale

LIFE

Winter Edition 2009

Giving life back

QUEENSLAND

Life at Annerley.... COMPLETED!

Giving back independence

BRISSIE TO THE BAY Brisbane’s biggest charity ride celebrates 20 years and its biggest ever event

Spring 2011

The official launch

and dignity

MS brought

us together!

BOB AND KAREN’S LOVE

Multiple Sclerosis Society

of Queensland

286 Gladstone Road Dutton Park QLD 4102 Locked Bag 370 Coorparoo DC QLD 4151 ABN 56 731 473 412

B_l_d] M_j^ CI 3P]PUN >P[O 4:

MS Life Spring 2010

MS Australia – QLD

Questions about MS?

MS gene discovery TREVOR FARRELL: GIVING LIFE BACK

Phone: 07 3840 0888 Fax: 07 3840 0813 Email: mssociety@msqld.org.au www.msaustralia.org.au/qld

We celebrate the end of an era as Executive Director Trevor Farrell prepares to retire after nearly 30 years

Q&A WITH MAYOR PAUL PISASALE Meet one of the most inspiring people living with MS in Queensland, Mayor of Ipswich Paul Pisasale

LIFE

Winter Edition 2009

Winter 2010

A YEAR OF EMPLOYMENT AND MS

Bruce Milligan

Summer Edition 2009

We’ve got the answers you’re looking for

MS SOCIETY OF QLD PURCHASES PARTIALLY COMPLETED TOWN HOUSES AS PART OF LIFE OPTIONS

FOR THE CAUSE Meet the Queenslanders supporting MS research and regional services

MS Life

VIRAL MS CAMPAIGN Learn what Mayor of Ipswich Paul Pisasale feels about employment and MS

Jonathan Loraine and

MS Australia – QLD

QUEENSLAND

LIFE AT ANNERLEY...

GIVING LIFE BACK The ambitious program to provide integrated and dignified care

STORY

MS Australia – QLD

WHAT A YEAR IT HAS BEEN FOR MS WORLDWIDE

MS AND SES PwMS Josie Montano helps during Queensland’s floods and cyclones

I was totally needle phobic and now I inject myself daily: I am up to about 2000 injections so far! I have learnt to walk from scratch about 16 times and have been blind twice.

McKINNON HOUSE

Coast

Summer edition 2009

CEO’s Desk 2 Life Options 3 Ian’s Story 4 In Memory of John 5 Reading for the Family 6 Storming Parliament 8 Events 9 Research Breakthrough 10 MS Book Reviews 12

MS Life Summer 2011

GET PHYSICAL The link between exercise and quality of life for people with MS

MS Life

QUEENSLAND

Questions about MS?

We’ve got the answers you’re looking for

MS SOCIETY OF QLD PURCHASES PARTIALLY COMPLETED TOWN HOUSES AS PART OF LIFE OPTIONS

Australian of the Year

In depth answers to the most frequently asked MS questions

Spring 2010

MS AWARENESS WEEK

BH 6jhigVa^V XZaZWgViZh *% nZVgh d[ ZmXZei^dcVa hZgk^XZ id i]Z cVi^dc ^c '%%+

Storming Parliament House for MS

B_l_d] M_j^ CI

MS Life

2nd Annual MS National Advocates Conference

I have managed this condition through positive thinking, meditation, pilates, Sharon and Sophia Ball with swimming, diet and an their puppy Millie amazing amount of love and friendship. I had been totally drug free for 7 years opting for natural therapies. However after much resistance, in 2001, I went on injection treatment which can lessen the severity of relapse.

Bruce Milligan

Summer Edition 2009

QUEENSLAND

Read about the lip smacking campaign that had everyone talking about MS

LIFE Queensland

KdajbZ (! 6j\jhi '%%+

who are worse off. I love my life and I look forward to everything that life offers. I look at MS as a rewarding challenge and not a disability. It

Then without announcement, I can be back as the resident celebrity in hospital learning to walk again.

part

26 May - 4 June

McKINNON HOUSE A new era of respite care in an idyllic setting on the Gold Coast

See how Queensland took part in World MS Day celebrations this year

pg. 15

One man’s struggle Living Positively against the odds with MS

MS Australia – QLD

Autumn 2011

Hde]^V ^h dcZ d[ FjZZchaVcYÉh ]^\]Zhi BH GZVYVi]dc [jcYgV^hZgh# I]^h nZVg! h]Z VcY ]Zg bdi]Zg \VkZ V heZX^Va egZhZciVi^dc id i]Z hX]dda VhhZbWan id ZcXdjgV\Z di]Zgh id _d^c ^c i]Z fjZhi id ÈgZVY [dg V gZVhdcÉ# >c i]^h ZmXZgei [gdb ]Zg heZZX] id i]Z eg^bVgn hX]dda hijYZcih! H]Vgdc ZmeaV^ch l]Vi ^iÉh a^`Z id a^kZ l^i] BH Ä VcY ]dl BH ]Vh ^che^gZY ]Zg id a^kZ a^[Z id i]Z [jaa#

JOIN THE GLOBAL MOVEMENT!

BRISSIE TO THE BAY Brisbane’s biggest charity ride celebrates 20 years and its biggest ever event

Jonathan Loraine and

of Queensland

FEATURE STORY

Debbie Smart was diagnosed with MS, but it didn’t stop her from moving to Africa to help vulnerable children

Winter 2011

Services to

support you

& taking control

MS AWARENESS WEEK

See how Queensland took part in World MS Day celebrations this year

pg. 15

One man’s struggle Living Positively against the odds with MS

LIFE

MS Australia – QLD

Australian of the Year GET PHYSICAL The link between exercise and quality of life for people with MS

MS Australia – QLD

Multiple Sclerosis Society

LIVING WITH MS

2 3 4 5 6 7 8

let MS hold her back EMPLOYMENT AND

pg. 8

Nominate your MS Hero

Autumn 2011

WORLD MS DAY How you can help the global campaign on employment and MS

Summer edition 2009

286 Gladstone Road Dutton Park QLD 4102 Locked Bag 370 Coorparoo DC QLD 4151 ABN 56 731 473 412

COOLING REBATE

State Government introduces a new electricity rebate for low-income Queenslanders with multiple sclerosis

LIFE. MS Life

MAGAZINE FOR PEOPLE

THIS ISSUE CEO’s Desk Brissie to the Bay Introducing Facebook Portrait of Posterity Work of Aart Lynette Walks Again Events

LOUISA ON A MISSION

“We Have MS, But It Doesn’t Have Us!”

MS Life

MS CLINIC CONVERSATIONS

In depth answers to the most frequently asked MS questions

CEO’s Desk 2 Life Options 3 Ian’s Story 4 In Memory of John 5 Reading for the Family 6 Storming Parliament 8 Events 9 Research Breakthrough 10 MS Book Reviews 12

A YEAR OF EMPLOYMENT AND MS

How the world united with a common goal: to raise awareness of MS

LIFE

Giving life back

the word about MS this May

Services to

support you

& taking control

Lisa & Sandy tell...

Giving life back

Her Excellency Ms Penelope

QUEENSLAND Volume 3 Spring Edition, September 2008

2 3 4 5 6 7 8 9 10 11 12

ABN 56 731 473 412 Phone: 07 3840 0888 Fax: 07 3840 0813 Email: mssociety@msqld.org.au www.msaustralia.org.au/qld

QUEENSLAND

PREPARING FOR THE SUMMER HEAT p.7

LIFE

Queensland

MS Australia – QLD

THIS ISSUE CEO’s Desk Brissie to the Bay Introducing Facebook Portrait of Posterity Work of Aart Lynette Walks Again Events An 11 year old’s idea... MS Readathon Ambassadors Needed Notice of AGM

3800 CYCLIST PEDAL FOR A CURE!

LIFE

are you getting enough?

Our New MS Ambassadors LEIZA’S STORYp.3

P15

MS Research Australia provides you with the latest updates on MS research

Volume 3 Spring Edition, September 2008

for brissie to the bay

Vitamin D

The First Official

World MS Day

Debbie strives despite MS

MOONLIGHT WALK Over 1300 people take a stroll through Brisbane to raise money for MS

LIFE

Queensland

New Record Multiple Sclerosis Society of Queensland 286 Gladstone Road Dutton Park QLD 4102 Locked Bag 370 Coorparoo DC QLD 4151

Spring Edition 2009

2nd Annual MS National Advocates Conference

Storming Parliament House for MS

Giving life back

QUEENSLAND

Life at Annerley.... COMPLETED!

Giving back independence

and dignity

Kate finds her dream job

MS brought

us together!

BOB AND KAREN’S LOVE

MS Life Summer 2011

GIVING LIFE BACK

FOR THE CAUSE

The ambitious program to provide integrated and dignified care

STORY

MS Australia – QLD

PwMSQ

Meet the Queenslanders supporting MS research and regional services

MS Life Winter 2010

A new framework to expand and strengthen the MS support group network

MS Australia – QLD

WHAT A YEAR IT HAS BEEN FOR MS WORLDWIDE

The First Official

World MS Day

Vitamin D

are you getting enough?

Our New MS Ambassadors LEIZA’S STORYp.3

MCKINNON HOUSE FOR RESPITE p.6

PREPARING FOR THE SUMMER HEAT p.7

OUR PATRON

Her Excellency Ms Penelope

Educate, Motivate & Advocate

Lisa’s story of motherhood and MS COMEBACK KID

Wensley AO

Geoff Huegill lends his support to MS, fresh from taking gold in Delhi

TABLET TALK A look at new oral treatments for MS that offer more options

LET’S CRUISE Helen Emery takes on the high seas in style with husband Graham

Are you a member of the

Membership with us, which is just $33 a year, helps us to provide more information and education about MS and leading MS research. To become a member or renew your membership for the 2013–14 financial year please contact us at mssociety@msqld.org.au or call 07 3840 0888.

HAVE YOUR SAY!

I’m hoping that my story will help to raise awareness about the MS cause and raise hope for young people who are diagnosed with MS and who are scared. I want to show other people who have MS that you can still achieve things and reach goals.”

Help support MS Queensland and it’s good work!

15/10/13 12:03 PM

On behalf of all Queenslanders living with MS, we look forward to your help in creating a future free from MS and its devastating impact.

The First Official

World MS Day

Debbie strives despite MS

MOONLIGHT WALK Over 1300 people take a stroll through Brisbane to raise money for MS

A GLOBAL MOVEMENT How the world united with a common goal: to raise awareness of MS

MEMBERSHIP: JOIN US

COOLING REBATE

State Government introduces a new electricity rebate for low-income Queenslanders with multiple sclerosis

FEATURE STORY

P10

Debbie Smart was diagnosed with MS, but it didn’t stop her from moving to Africa to help vulnerable children

RESEARCH NEWS

P15

MS Research Australia provides you with the latest updates on MS research

Vitamin D

are you getting enough?

Our New MS Ambassadors LEIZA’S STORYp.3

MCKINNON HOUSE FOR RESPITE p.6

PREPARING FOR THE SUMMER HEAT p.7

OUR PATRON

Her Excellency Ms Penelope

Educate, Motivate & Advocate

Lisa’s story of motherhood and MS COMEBACK KID

Wensley AO

Geoff Huegill lends his support to MS, fresh from taking gold in Delhi

TABLET TALK A look at new oral treatments for MS that offer more options

LET’S CRUISE Helen Emery takes on the high seas in style with husband Graham

Debbie strives despite MS

MOONLIGHT WALK Over 1300 people take a stroll through Brisbane to raise money for MS

A GLOBAL MOVEMENT How the world united with a common goal: to raise awareness of MS

COOLING REBATE

State Government introduces a new electricity rebate for low-income Queenslanders with multiple sclerosis

FEATURE STORY

P10

Debbie Smart was diagnosed with MS, but it didn’t stop her from moving to Africa to help vulnerable children

RESEARCH NEWS

P15

MS Research Australia provides you with the latest updates on MS research

TODAY

MS Queensland?

Membership with us, which is just assists us in providing information $33 a year, and education about MS and leading edge MS research to find a cure for multiple sclerosis. This includes the information you receive through publications such as MS Life, MS Insight and our Online Resource Centre on our website. We regularly receive very positive feedback about the information content of our flagship client-focused magazine, MS Life. We are committed to continuing to provide this valuable information resource to anyone who has an interest in MS and as such we do not restrict its circulation to MS Queensland members only. But this comes at a substantial cost and we need your support. It currently costs us $30,000 per year to produce and distribute MS Life and current membership subscriptions provide $12,000 per year – a significant shortfall each year. So if you value the publications and services MS Queensland provides then please show your support by joining the Society today. For a fee of just $33 you can join us for a year, or you might consider becoming a Life Member for just $330 to avoid worrying about paying your membership ever again! The strength of MS Queensland is in its active and committed members and we would welcome your contributio n to our vital work. As a financial member you’ll also have the opportunity to have your say on the exciting future plans of MS Queensland at the Annual General Meeting (AGM) in November. To become a member, simply complete the form overleaf and return it to MS Queenslan possible. On behalf of all Queenslan d as soon as ders living with MS, we look forward to your membership support for a world free from MS and its devastating impact.

Lincoln Hopper, CEO

MS1192_MembershipD

LJul13_Art01_sd.indd

7/07/13 3:39 PM

MS LIFE – SUMMER 2014

Board

GoVErNMENT FuNDING AND CLIENT SEr

ms rEsEArch EXPENDItUrE has remained relatively stable, however it is projected to increase to $350,000 for 2013–14.

our PEoPLE

Lincoln hopper

member Board Member since 2005

15/10/13 12:03 PM

our GoVErNANCE

Simon keyser

member Board Member since 2011

MS1210_AnnualReport13_Book.indb 48

our FINANCIAL PErForMANCE

John Dempsey

member Board Member since 2007

meeting attendance

ToTAL SurPLuS For THE 2012–13 FINANCIAL YEAr WAS $996,057

Total rEvENUE in 2012–13 INcrEAsED By 7.5% on the back of increased event fundraising income and significant donations to our bequests program.

rachel matthews

The Group continues to be reliant on State Government funding to provide residential care and other client services to people living with MS, and their families and carers. our GovErNmENt sUBsIDIEs ProvIDE 71% oF FUNDING for client services (2011–12: 74%).

FINANCIAL

HIGHLIGHTS

The Group recorded a sUrPLUs for the current financial year of $996,057 (2011–12: $630,530) which is an increase of 58%. This was an excellent result in a difficult operating environment.

meeting attendance

The 30-year-old has always led an active lifestyle and has participated in several MS Brissie to the Bay bike rides.

totAL EXPENDItUrE in 2012–13 INcrEAsED By 5% with an increase of $361,000 (5%) in spending on client services and an increase of $134,000 (2%) in fundraising expenditure.

our FuNDING

mS story

ToTAL rEVENuE For THE 2012–13 FINANCIAL YEAr WAS $14,392,160

Exercising has always been part of Manoli’s life, even more so since he was diagnosed with MS six years ago.

EVENT FUNDRAISING

‘rAISING MoNEY To HELP PEoPLE WITH MS GIVES You SuCH A GooD FEELING.’

mEEt oUr r Bo BoArD

STEP-BY-STEP REDLANDS STEP STEP-BY-STEP BY TEP ExERcISE GRoUP BY-S THE MS QUEENSLAND PHYSIOTHERAPY SERVICE IS ExCITED TO ANNOUNCE THE COMMENCEMENT OF The InauguRaL ‘STep-BySTEP’ ExERCISE GROUP IN THE REDLANDS AREA.

MS LIFE – SUMMER 2014

It’s well documented that exercise is essential for promoting good health in the general population. Recent research is also showing strong support for the importance of exercise for those living with MS. Exercise has been shown to improve function, quality of life, general health and wellbeing and can help to prevent falls and reduce MS related fatigue. Despite these positive aspects, research also suggests that people with MS are less likely than those in the general population to achieve recommended levels of exercise. For those living with MS, the barriers to achieving exercise goals are many and varied. Lack of transport, fatigue, fear,

lack of motivation and lack of access to professional advice on appropriate exercise are just a few reasons people may avoid or limit participation in formal exercise activities. It’s now well understood that tackling these barriers is essential if people are to be supported to engage in increased levels of exercise and physical activity. In response, the MS Queensland Physiotherapy service has committed to developing and trialing new and innovative services that target these barriers. ‘Step-by-Step,’ an eight week exercise and education program, commenced in early October in the Redlands area. Designed with sustainability in mind, and in partnership with the Victoria Point YMCA gym, the program has seen around ten willing ‘exercisers’ meet on a weekly basis to challenge their balance, strength and control and try out some of the gym equipment they had been too afraid to try in the past. Early informal feedback from

participants is that the group is providing a safe, fun and appropriate opportunity to explore exercise options and learn a little about exercise and MS in a local setting. The Redlands ‘Step-byStep’ program will be evaluated and delivered in other areas in 2014 so watch this space! Information regarding this service can be found on our website www.msqld.org.au or by contacting the Physiotherapy Department Receptionist and Administrative Assistant Linda Wilson-Marks on 07 3840 0841.

YoUNGcARE

cANAPéSS & cANVAS GRANTS cANAP

Debbie’s existing bathroom did not safely meet her personal care needs, did not allow for wheelchair access and presented a high risk of falls. The July renovation provided a long term sustainable solution for Debbie and has allowed her to safely receive the level of service she currently requires. Ultimately, the Youngcare grant has allowed her to remain living at home with her 23 year old son, and primary carer, Jonathan.

“MS Queensland has been absolutely wonderful. I have been a client for over 20 years and have received a great level of support from the Society. The grant has provided me with wheelchair access to my bathroom and has allowed me to remain independent by living at home with my son.”

SInCe ITS InCepTIon In 2006, Canapés and

Canvas began when two friends Natalie Walsh and Vickki Elliott were diagnosed with MS and their friends wanted to come together to make a difference. In 2006, Canapés and Canvas started with a charity art show which developed into an annual ladies lunch – which has been hosted at Cloudland in the Fortitude Valley for the past three years and has grown to welcome over 300 guests. The key objective has been raising awareness of MS and important funds to help find a cure through the funded MS Research Australia project of what happens to MS during pregnancy, led by Queensland-based Professor Pamela McCombe. This year’s MS Spring Luncheon raised over $25,000 to go towards the MS Queensland READY Resilience Program. READY (Resilience for Adults Every Day) is a group-based program that aims to help build skills in resilience and managing the challenges of everyday life and living with MS. Participants in the program have experienced reductions in stress and improved their ability to cope with difficult situations and difficult emotions. Over the years the Canapés and Canvas events have raised almost $200,000 to support the MS community. A huge thank you goes to this year’s Committee members Natalie Walsh, Anna Goffage, Emma Macfarlane and Jodie Madders for all their fundraising efforts.

This year alone, MS Queensland’s RSC team have been successful in securing over $75,000 on behalf of our clients. This is external to MS Queensland grants which amount to another $30,000. For more information on our services and RSC team, please contact our Community Services Manager Margaret Hegarty on 07 3840 0816 or InfoLine on 1800 177 591.

Top: 2013 Committee Members Above: 2011 Committee Members

Margaret Heg Communit arty, MS Queens y Service la s Manag nd er

MS LIFE – SUMMER 2014

With the assistance of her Regional Service Coordinator (RSC), an application for a Youngcare grant was made on Debbie’s behalf. The RSC’s role was to work with Debbie and other local services to ensure the grant application met the selection criteria as the process is highly competitive.

READY program

hELPS

Debbie Munro is a client of MS Queensland living on Brisbane’s northside and recently benefited from a Youngcare grant. Following an MS relapse last September, Debbie’s support needs increased. Due to limited wheelchair access in her home bathroom this meant Debbie needed daily in-home assistance with personal care.

New Year’s resolutioNs A FocUS oN SELF-MANAGEMENT At this time of the year we’re traditionally preparing for a change in our daily routines; to meet with family and friends, for holidays, or a change in carers’ and support staff attendance. Often this is closely followed by a period of selfreflection and goal setting for the next year – or the New Year’s resolutions! Most resolutions unfortunately become synonymous with disappointment. However it need not; if the emphasis is on setting realistic goals within a designated time frame. It’s the freshness of a new year, the turning over of a new leaf that encourages us to set goals in the first place. However January, or indeed any month, is ideal for putting in place health behaviours that enhance our overall well-being. This process closely aligns to the principles of selfmanagement. Self-management is about dealing with the impact that a long-term condition has on a person’s daily life. It refers to an individual’s ability to take control of their health and effectively manage their chronic illness, with a strong emphasis on self-efficacy. Self-efficacy is the belief that you are capable of performing in a certain manner to reach certain goals. The definition of self-management as developed by the Centre for Advancement of Health is: MS LIFE – SUMMER 2014

Self-management: “involves (the person with the chronic disease) engaging in activities that protect and promote health; monitoring and managing the symptoms and signs of illness, managing the impact of illness on functioning, emotions and interpersonal relationships and adhering to treatment regimes.” Kate Lorig, a leading researcher in this area, adds that selfmanagement is also about enabling “participants to make informed choices, to adapt new perspectives and generic

skills that can be applied to new problems as they arise, to practise new health behaviours, and to maintain or regain emotional stability.” These two definitions both suggest education can lead to informed choices in monitoring physical and emotional health, problem solving, and practising new health behaviours. Supporting self-management in MS involves educating people about their condition and care, and motivating people to look after themselves effectively. Empowering people with MS to move from a passive role to a proactive one, using the skills or tools gathered to choose with support a course of action to enhance health. So how will you self-manage your MS through 2014 – and not just in January? Will it be through increasing your knowledge about your MS symptoms and signs; or perhaps seeking assistance with physical functioning, or relationships; or finally commencing that movement program…walking, swimming, pilates, tai chi or yoga. Starting anything new can be daunting, but the rewards are a more informed, more able physically and emotionally YOU. So enjoy your choices. For more information on how you can self-manage your MS, call our InfoLine on 1800 177 591.

how KAThY LIVES

AFTER-hoURS

AqUATICS PILATES

POSITIVELY wITh MS

IN FEBRUARY

Our after-hours services will be commencing Monday 3 February 2014 and due to popular demand, our aquatics and pilates sessions will kick-start the new year.

DATES: 8 week program commencing on Monday 3 February (4 weeks of each)

TIME:

5.30pm – 6.30pm

VENUE: MS Queensland Physiotherapy Department Denbigh Street, Dutton Park.

coST:

New participants $40 (to pay in advance). Returning participants $80 (to pay in advance).

“I refuse to let MS control my life!” “It all began in 1988. I woke one morning to find my eye had locked into position and I could only see straight ahead. The doctor advised that I have a lumber puncture, which the neurologist informed me was inconclusive. Fast forward to 1995. My feet wouldn’t lift properly and I was constantly bumping into walls and falling over. I was already seeing a specialist for a debilitating back injury when he noticed my ankles were hyper-flexed. I was admitted to hospital for tests and shocked to be told I had MS.

People whose MS is stable and use no mobility aides while walking at any time during their usual week can participate in the sessions offered.

As the months rolled by I experienced spasms in my legs that would all but tear the muscle off my bone. My skin was constantly on fire and I found it difficult to swallow.

Information regarding this exercise opportunity can be found on our website www.msqld.org.au or by calling our InfoLine on 1800 177 591 or by calling the Physiotherapy Administration Assistant Linda Wilson-Marks on 07 3840 0841. Linda will be able to assist you with your enquiries and bookings.

I’d gotten comfortable and confident outdoors only to be knocked down when my bowels suddenly became uncontrollable in the shopping centre. It was pure horror. My bladder was giving me no warning so after being caught in the public eye one time too many I soon became a recluse. After another two years, my walking had ceased so I had to accept the need for a wheelchair. I rapidly lost every bit of independence.

Spaces are limited so book early.

NEW LOOk MS INSIGhT

Did you know that MS Queensland sends out a free monthly e-newsletter? To receive regular updates on the latest news, MS research and our services and fundraising events, simply subscribe via the bottom right-hand corner of our website homepage at www.msqld.org.au

Seven years had now passed before my specialist entered my life and after a lot of rehabilitation, I am now able to walk and drive a car again. I am pain free and of late can somewhat run. Having once thought MS had taken control of my life, I now have the tools to be able to walk unaided and live a positive life.”

MS LIFE – SUMMER 2014

Aquatics is pool exercise and allows a greater degree of freedom of movement than on land, incorporating stretching, balance and flexibility. Pilates is a great method to teach you better control of muscle groups and is conducted on the mats in the gym.

ANNA ANNA’S r at last undraise alk f p to a W s Anna wa MS Moonlight year’s

POSITIVITY SHINES THROUGH

MEET ANNA WINGROVE, DIAGNOSED WITH MS IN 2011 AT THE AGE OF JUST 24. Anna’s MS journey began nine years ago when she started experiencing headaches and nerve pain, followed by numbness, dizziness and blurred vision in 2011. Unfortunately, Anna’s first experiences with MS were misinformed and lengthy; being told by a GP she would end up blind, lose bladder control, go deaf and lose the use of her limbs. MS LIFE – SUMMER 2014

We recently met Anna and asked her to share how she now manages her MS and how she’s getting on with life after diagnosis. “Over the years, every specialist I saw for different problems always examined the body part instead of considering it could be neurological. Whilst my MS diagnosis was devastating it did explain an awful lot. Finally the dots connected. It wasn’t until days later, when I was contacted by Andrea Todd my local MS Nurse, that some of my anxiety

was relieved – she is amazing. A lumbar puncture later confirmed that I did indeed have relapsing-remitting MS. In terms of adjusting to living with MS, I’ve been lucky enough to have worked at the same law firm for eight and a half years. It is a sitting down job, which is great as I couldn’t handle being on my feet all day. Most of my current symptoms can be managed to some degree through life changes – it seems to be all about adjusting. “If I could give any advice to people who are newly diagnosed, I’d definitely say stay off Dr Google!” I hope to be an example to other young people with MS of how well it can be managed, and how much fun can be had whilst living with such a cruel disease. I want society to realise that people with MS come in all different shapes, sizes and ages, and are often just the ‘girl or guy next door.’ With MS you get to experience and appreciate life like many others haven’t, so in some ways I am very blessed.

When Dad was diagnosed with cancer (one week after we became a couple) and I was newly diagnosed, Matthew handled my grief with such grace. I was pretty upset and I didn’t want to burden Mum with my grief so Matthew dealt with the brunt of it. I guess most couples when they first meet go through that ‘honeymoon stage’ where they are just head over heels and gleefully happy. Given the circumstances we didn’t really get that, but I feel we are a stronger couple now given all we have been through in our short relationship. Matthew also enjoys fundraising for MS Queensland which is something I am really passionate about. Our team ‘Walking on Sunshine’ made up of family members and friends, have participated in the MS Moonlight Walk in Brisbane for the past two years. Last year I even became a top fundraiser.

Fundraising and creating awareness about MS has become my new mission. I want to get even more involved with MS Queensland events once I finish my Financial Planning degree at the end of February! “I’ve learnt that 60 seconds of sadness is a minute of happiness wasted! Being happy doesn’t mean everything is perfect, it means you’ve decided to look beyond the imperfections in life and follow your dreams.” This is how I now choose to live my life.” Anna’s story is just one of hundreds of clients who have seen benefits from MS Queensland’s services. For more information on our services please contact our InfoLine on 1800 177 591 or visit our website www.msqld.org.au

MS LIFE – SUMMER 2014

“My boyfriend Matthew has also been such an incredible influence, he is so positive and I know he’ll do anything for me. He is my rock.

BIGGEST EVER MS MooNLIGhT wALK This year’s MS Moonlight Walk was the biggest ever, with over 3,100 walkers raising more than $500,000. This is such a fantastic result – together we smashed the original fundraising goal of $350,000. It was an eventful evening with rain and storms hitting Brisbane all afternoon, but our dedicated and passionate supporters still turned up in their thousands. The walk kicked off with our Disco Divas getting everyone warmed up. Regina Brook then shared her inspirational story of living with MS, and MS Ambassador Mayor Paul Pisasale (City of Ipswich) wished everyone well for the walk. Our top 100 fundraisers led the group for a moonlit walk around the Brisbane River, guided by their special blue top fundraiser lanterns.

the river. A special mention was given on the night to our top fundraising team ‘nels Belles’ who raised an incredible $24,585! And our highest individual fundraiser was Paul Smith with an amazing $10,057. Thank you to everyone involved for making the 2013 MS Moonlight Walk such a success! It’s because of this support we can continue the fight against MS.

They were soon followed by the remaining walkers; people living with MS carried white lanterns and thousands carried red lanterns, leaving a trail of glowing red along

MS FUNDRAISERS IN ThE coMMUNITY David Ogg has seen the full effects that MS can take, watching his dad’s own personal journey living with the condition.

MS LIFE – SUMMER 2014

Using this motivation, David made a commitment to participate in the Sunshine Coast Ironman 70.3 and fundraise for a cause close to his heart. Asking local businesses to sponsor him, he soon smashed his $1,000 fundraising goal. But David didn’t stop there – he continued fundraising, shared his

personal story, educated people about MS and even persuaded his friends to run a few fundraising BBQs. At final count David not only achieved his goal of completing the Ironman 70.3 in 5 hours and 12 minutes, he also raised over $4,086 in support of people living with MS! Thanks to David and all our great community fundraisers across the State for your passionate support and help. For more information on how to become a community fundraiser please contact Julie Hanlon on 07 3840 0887 or email julie.hanlon@msqld.org.au

MS MEN’S LUNch In November 200 gentlemen gathered at Suncorp Stadium for the annual KPMG MS Men’s Lunch. Special guest Mayor Paul Pisasale (City of Ipswich) gave insight into his life with MS, and also facilitated a Q&A session

with rugby league legend Darren Lockyer. Thanks to KPMG for their continued support in making the 6th annual MS Men’s Lunch a success, with $35,000 being raised for people living with MS.

BIG D BIG DINNER INNER PARTY PARTY IS BAc BA BAcK K Do you enjoy eating great food? Do you enjoy spending time with your friends and family? Are you passionate about supporting people with MS? If you answered yes to any of these questions then you would make a MS SwIMAThoNS SPLAShING perfect Big Dinner party host. For more information visit IN SEVEN LocATIoNS IN 2014 www.BigDinnerParty.com.au Dive in and swim for people with MS. The 2014 MS Swimathon season has splashed upon us with seven events planned for 2014 in Cairns, Townsville, Mackay, Rockhampton, the Gold Coast, Toowoomba and Jindalee. Each year the MS Swimathon attracts thousands of participants across Queensland and has raised more than $500,000 for MS since 2011. The concept is simple; teams of up to 12 people swim relay style for 12 hours, fundraising in support of their efforts. We don’t mind if you doggy paddle or swim like a fish – sign up a team and join your local community in raising

awareness of MS and vital fundraising dollars. Join us for an amazing community day out, and dive in to support people with MS! For up to date event information on MS Swimathon events coming up, or to register your interest visit www.MSswimathon.com.au

MS BRISSIE To ThE BAY 2014 The date has been set for the 2014 enerflex MS Brissie to the Bay bike ride – Sunday 22 June. It was only a few months ago that 5,800 cyclists rode their way into the history books, raising over $1.28 million to assist people living with MS.

We hope you can join us at Musgrave Park on Sunday 22 June 2014 for an active, family day out, and join in the fight against MS. For more information please visit www.BrissietotheBay.com.au

MS LIFE – SUMMER 2014

The MS Brissie to the Bay bike ride is suitable for all riding abilities with 10km, 25km, 50km and 100km courses. After the ride there is a fun, family, festival atmosphere to celebrate everyone’s achievements.

DIANNE FRoM ThE SUNShINE coAST Dianne Ansett is a client of MS Queensland on the Sunshine Coast and is also an active member of the local support group. Over the last 12 months Dianne has made some significant changes to her lifestyle and how she manages her MS. Her attendance at a recent MS Queensland ‘Introduction to Chronic Disease Self-Management’ workshop on the Sunshine Coast played an important role in assisting her to identify what changes she wanted to make. Since this workshop Dianne has also: • consulted with the MS Queensland physiotherapist in Redcliffe • joined local community based exercise groups (tai chi, Heartmoves and Lift for Life) • attended the Sunshine Coast ‘Fatigue SelfManagement’ workshop • consulted with a dietician • continued volunteering in the Community • completed our MS Moonlight Walk this year. Today, Dianne says that she has never felt better. Her energy and fatigue has improved, along with her balance and mobility. “Attending the workshop was a real turning point for me. It made me look at where I was going with my life and encouraged me to self-manage my treatment. I have since started following an exercise program and am seeing a dietitian – I’ve never felt so well in my life!”

MS LIFE – SUMMER 2014

For more information on our range of services and how we can help you manage your MS, please contact our InfoLine on 1800 177 591 or visit our website www.msqld.org.au

LEAVING BEqUESTS GIVING TO LOVED ONES AND CHARITIES IN YOUR WILL IS A SPECIAL WAY TO HONOUR THE PEOPLE AND CAUSES MOST IMPORTANT TO YOU. By InCLuDIng MS QueenSLanD In YOUR WILL, YOU ARE MAKING A GIFT OF ENDURING HOPE FOR THOUSANDS OF QUEENSLANDERS LIVING WITH MS. Perhaps you’ve been touched by the condition yourself and understand all too well the need for physiotherapy to maintain balance and improve mobility. Maybe your neighbour or co-worker’s recent diagnosis left their entire family reeling with uncertainty, and counselling has helped them forge a positive, hopeful path forward. Maybe you champion our vision of a world free of MS and its devastating impact for your children and grandchildren. This Christmas season, think about the lasting impact you want to have on others when you’re gone. Consider how your passions and interests will continue through the people and organisations you love. And after taking care of loved ones, please consider including MS Queensland in your Will. It’s more than a donation; it’s the gift of enduring hope. For more information or to arrange a confidential discussion, please contact Julia Senior on 07 3840 0863 or visit www.msqld.org.au/ how-you-can-get-involved/bequests

Dianne and

Peter Anset

✓ support cardiovascular functions

DO YOU KNOW AN

MS angel

✓ warm legs with less or no pain ✓ ease spasms increase mobility

MOTOmed... passive/ active exercise. Assist in your own rehab

www.abilityinmotion.com.au admin@abilityinmotion.com.au Ph 07 5448 1753 • Fax 07 5335 1604 A.I.M - to brIng InnovAtIon to QueenslAnders

Above, left to right: Lori Lowther, Wenda Shurety, Natalie Walsh, Dylys Bertelsen, emma Roberts, Carla Fairweather, vivienne anthon and Sally Trestrail

The MS Angels are a female networking group from the business and government community, who donate their time and funds to support MS research in Australia. MS Angels consist of both well-known current female private and public sector leaders and also future female leaders in current management positions. The concept provides an opportunity for current senior leaders to support the next generation of women leaders. MS Angels formally meet for six events over 12 months, with special invited guests, to get to know each other, develop networks and learn more about the research project that they support.

Would you be interested in becoming an MS Angel by making an investment in MS research to target prevention, better treatment and a cure for MS while also networking with other professional women? To express your interest or for more information please contact Wenda Shurety at wenda.shurety@msqld.org.au

FURTHEeR WITH th

luggie! 2.

Unfold it and you’re ready to go – the new, light‑weight Luggie®. Perfect for travelers who need transport when they reach their destination and weighing only 23kg, the Luggie has a range of 15 kms and can carry a maximimum load of 114kg. Fold it up and take it with you: by car or train, by boat or plane, you’re ready to go! VISIT scootersaus.com.au or CALL 1300 622 633

go.

MS LIFE – SUMMER 2014

The MS angels have been in operation in Brisbane since 2011. It began in 2009 in Sydney and progressively rolled out in Canberra and Melbourne. Since establishing themselves, the MS Angels have raised over $300,000 towards groundbreaking MS research. our Brisbane Angels (pictured), some of whom are living with MS include senior executives from PwC, the Australian Institute of Management, Link Market Services, McGrathNicol, McCullough Robertson, Wilson HTM, First Samuel, Windsor Recruitment and more.

Dealers throughout Australia.

A NEw GoVERNMENT AND A NAME chANGE BAcK To NDIS

You may have previously subscribed to the Pulse Newsletter from the Department of human Services. Pulse provides news, views and things to do for people with a disability. To keep up-to-date with the latest disability news sign up to www.humanservices.gov.au/disability

FIoNA ANDERSoN, Queensland coordinator of the Every Australian counts campaign recently provided wonderful insight into how the NDIS can work; please see an excerpt below. we hope you will be as excited as we are after reading this about the possibilities for a future of choice and control.

After work he’ll head off to gym he will actually for a personal training be able to get out his session three nights a front door because the week. It’s harder to stay fit NDIS will have funded the when you have restricted purchase, servicing and repairs A young adult mobility, but where there Please note the of his new power wheelchair – NDIS will not pay with a physical is a will there is a he will put gym fees or coaching disability will receive which he will have planned for way. in a full day at work, and received before his old fees but will pay for NDIS funding to pay a meeting up with a one breaks down yet again the support someone support worker to help support worker to help as he is crossing a busy needs to use the gym him get out of bed, into the him with personal care a road. equipment. shower, breakfasted, dressed a few times during the and out the door – in time an day, paid for by to take the bus to w the NDIS. work.

MS LIFE – SUMMER 2014

In September, Pointfinder, an Australian-made Android App went live which is designed to help blind and vision impaired users navigate between landmarks. The app’s inbuilt compass or Google Maps can then be used to provide directions. Visit the App Store on your phone to source the app.

ADVOCACY

wITh NATALIE MS Queensland CAPS 2013 0813 OL.pdf 1 13/08/2013 11:38:52 AM

FOUR MONTHS IS A LONG TIME IN POLITICS! Since our

last edition we’ve had a new coalition Federal Government come into power with Tony Abbott as our new prime Minister and Bill Shorten the new leader of the Federal Labor Party. Inevitable changes have been made to Ministerial responsibilities and one notable immediate change has been the name change from DisabilityCare Australia back to the NDIS (National Disability Insurance Scheme). C

CMY

The NDIS will provide the infrastructure so people can live their lives, in the same way that other Australians can do. To view the full version, please visit our website www.msqld.org.au/ homepage/latest-news/756-ndisupdate-october

Natalie, Advocacy Manager Keep updated on news regarding the NDIS on our website or contact Natalie Walsh 07 3840 0823 or email natalie. walsh@msqld.org.au

The launch of

MS ATLAS hIGhLIGhTING MS woRLDwIDE Multiple sclerosis is more prevalent than previously thought, according to a recent authoritative global survey. The Multiple Sclerosis International Federation (MSIF) recently launched MS Atlas, the most comprehensive collection of epidemiological information about MS worldwide. It provides a clearer picture of MS around the world and how it is being diagnosed and treated.

MSIF is encouraging people from the international MS community to make use of the latest data to ensure improved diagnosis, treatment, information and resources are available to all, regardless of where they live. It calls for more research into effective treatments and practical ways to improve quality of life for people living So the young with MS, including a global effort to make treatments bloke with a more affordable. disability is working, So he earning, spending, goes to TAFE If you are interested enjoying life, two nights a week After 23 years, his in the latest MS paying tax. after work, again with parents no longer have information n NDIS funded support to organise their entire and statistics, download worker meeting him working and personal lives the MS Atlas at at TAFE to help him around their son’s disability www.atlasofms.org with personal support needs. They both care. return to full-time work, earn income, pay tax, spend money.

MS LIFE – SUMMER 2014

Senator the Hon Mitch Fifield (former Shadow Minister for Disabilities) as Assistant Minister for Social Services has been given the responsibility for the development of the National Disability Insurance Scheme and aged care. Since 1 July 2013 the four launch sites in Victoria, New South Wales, South Australia and Tasmania have been running with positive feedback.

qUESTIONS wITh TIM

RELAPSE: “THE APPEARANCE OF NEW SYMPTOMS, OR THE RETURN OF OLD SYMPTOMS, THAT ARE CONSISTENT AND PERSISTENT FOR A PERIOD OF 24 HOURS OR MORE – In The aBSenCe oF a Change In CoRe BoDy TEMPERATURE OR INFECTION.”

RELAPSES what is a relapse and what do I do about it? I get this question a lot – from people who are new to MS and people who have had MS for a long time – there is still some uncertainty about exactly what is a relapse of MS. Other terms that you may see used that mean the same thing are ‘attacks’ or ‘exacerbations’ or even an ‘acute clinical event.’ Relapses are of course more common for people who have relapsing remitting MS but CAN occur in progressive MS. A relapse is defined by “the appearance of new symptoms, or the return of old symptoms, that are consistent and persistent for a period of 24 hours or more – in the absence of a change in core body temperature or infection.” So it may be something new, or something you have had before that has gone away, or even a symptom you have that is manageable that gets worse over a short period of time.

MS LIFE – SUMMER 2014

In relapses, MS symptoms usually come on over a short period of time – over hours or days. They often stay for a number of weeks, usually four to six, though this can vary from very short periods of only a few days to many months – unfortunately there really is no way to predict how long they will last or how much recovery will occur following a relapse. Relapses can vary from mild to severe. At their worst, acute relapses may need hospital treatment, but many relapses are managed at home, with the support of the GP, MS specialist nurse, and other care professionals. Relapses are very unpredictable, like everything else about MS, and there are no definite triggers for a relapse. Many people will however say that relapses occur following very

stressful events, or after an infection, but this is definitely not always the case. They can just come on out of the blue. Knowing what is happening and what to do about it can go a long way to reducing the stress of a relapse. MS Australia has a very good resource (see page 19) that many people have found useful in having a plan and contacts at hand if a relapse occurs. Simply knowing who to talk to can help get a plan in place, and know what options people have if and when a relapse occurs. Thank you to those that asked these questions – as always I hope this information is beneficial. You can always call or email us to discuss any symptoms in more detail with us directly.

Tim, MS Nurse Practitioner Manager Specialist Education

If you have an MS-related question to ask our Manager of Specialist Education Tim, that can be answered in the next MS Life, please email Tim at mslife@msqld.org.au before 13 January 2014.

RESoURcES RELAPSES Hopefully relapses can be minimised, however when new MS symptoms start to occur or old ones return, it can be a distressing time for a person living with MS. Having knowledge and a plan in place can be helpful to reduce the stress of the MS rollercoaster.

For more information about any of these resources, or to have a copy of these mailed or emailed to you, please email us at info@msqld.org.au or phone our InfoLine on 1800 177 591.

MANAGING A RELAPSE

MANAGING THE FLARE UPS AND DOWNS OF MS

This publication discusses topics such as What is a relapse? What can mimic a relapse? What can trigger a relapse? How to be prepared and how to manage when they occur. This publication is available at www.mssociety.org.au/booklets.asp

This article is an excerpt from the Rocky Mountain MS Centre Newsletter (USA) InforMS Summer 2011 Vol 27, Issue 3. To access this article visit www. mscenter.org/dev/images/stories/ ExacerbationSummer2011.pdf

MS SUPPORT

FROM THE CHAIRPERSON OF PwMS SUPPORT GROUPS, JENNI

and supporters in the search for finding a cure for MS. It takes never-ending enthusiasm and organisational talent to create events such as these, which thrive each year.

It would be an understatement to say that the last three months leading up to Christmas have been a very productive and rewarding quarter. The MS Moonlight Walk exceeded all expectations and raised over $500,000. The drizzly weather didn’t dampen the enthusiasm from supporters from all over Queensland, so thank you everyone.

The MS Support Group Forum in November, combined with the MS Queensland Annual Conference and AGM on the following day, was a well orchestrated affair, and months in the making by the team at MS Queensland. Representatives from all of the support groups across Queensland were invited to attend, to build their networks and insight into the working of MS Queensland and the Board.

I am proud to be associated with all of the MSers’ who arrived by wheels, bus, train, wheelchair, wheelie walker and wobbly legs! Sheer determination and personal bests came with great strength and true grit.

We hope personal connections were formed and a greater understanding of other group activities shared amongst our MS Support groups for a productive and promising 2014.

The last MS Swimathon events for 2013, Toowoomba and Jindalee, once again saw a gathering of families, friends

May your Christmas be filled with peace and blessings. Jenni, PwMS Support Groups Chairperson

If you have any questions about our support groups and how we can assist you, please contact me at jennifersaunders3@bigpond.com

MS LIFE – SUMMER 2014

GRoUPS UPDATE

15 FEB – 25 APRIL

1 – 31 MARCH

15 MARCH

APRIL

Date TBC

MS Heroes Awards nomination period

Host a dinner party to help fight MS

MS Swimathon Gold Coast

MS Swimathon Cairns

www.msqld.org.au

www.BigDinnerParty.com.au

www.MSswimathon.com.au

APRIL

1 – 31 MAY

10 MAY

18 MAY

MS Swimathon Townsville

MS Awareness Month

MS Swimathon Rockhampton

MS Swimathon Mackay

www.MSswimathon.com.au

www.KissGoodbyetoMS.org

www.MSswimathon.com.au

28 MAY

22 JUNE

OCTOBER

NOVEMBER

Date TBC

30 MAY 2012

World MS Day

Enerflex MS Brissie to the Bay bike ride

MS Moonlight Walk

www.worldMSDay.org

www.BrissietotheBay.com.au

www.Moonlightwalk.com.au

Date TBC

MS Swimathon Toowoomba & Jindalee

www.MSswimathon. com.au

For more information contact the MS Queensland Events Team on 07 3840 0828 or email events@msqld.org.au

Unless otherwise stated, the views expressed in MS Life and submitted photography are those of individual authors and MS Clients, and not of MS Queensland. MS Queensland does not expect or invite any person to act or rely on any information, statement or opinion in MS Life, and readers should make and rely on their own inquiries, and obtain professional advice, before making any decisions or giving any advice arising out of any such information, statement or opinion. Neither MS Queensland nor any of its employees, agents or contributors shall be liable for any errors or omissions in any material in MS Life, and in no event will MS Queensland or any of its employees, agents or contributors be liable for any loss or damage arising from reliance on any information, statement or opinion in MS Life. Apart from any use permitted under the copyright act, no material in MS Life may be reproduced or communicated to the public in whole or in part without written permission from MS Queensland or the relevant copyright owner. © 2013 Advertising Disclaimer: Advertisements are provided to assist consumers to locate and purchase suitable products and services. MS Queensland does not endorse any one product or service over another, nor do we receive any commission on sale of items. Consumers are encouraged to discuss the options for purchase with the particular supplier as MS Queensland is not liable in the event the product is not satisfactory.