MS Life Autumn 2013

MSLIFE.

BrEndan’s physIo journEy wIth Ms

pg. 10 New after-hours program at Dutton Park Physio

pg. 21 What do you know about the NDIS?

pg. 19 Ann Langley’s contribution to MS

QUEENSLAND’S PREMIER MAGAZINE FOR PEOPLE LIVING WITH MSMSMS

AUTUMN 2013

taKInG FundraIsInG TO THE EXTREME

Help us Kiss Goodbye to MS this May

LETTERS TO OUR MANAGER Of SPEcIALIST EDUcATION, TIM

Dear readers,

Welcome to 2013 – I can’t believe we are in April already! Firstly, I’d like to introduce myself as your new editor. Melanie Mead has taken a secondment to work for the MS Society in the United Kingdom, so I’ll be stepping into her shoes as the new Media and Communications Advisor for MS Queensland. Recently, I had the pleasure of hosting my own MS Big Dinner Party, which was of course a night filled with great food and company to help raise those much needed funds. Over the last month, we’ve also seen the first two of our eight MS Swimathons to hit Queensland this year. While MS Swimathon is again returning to the Gold Coast, Redcliffe, Cairns, Townsville, Jindalee and Toowoomba, we will see two new swims reach Rockhampton and the Sunshine Coast before June. Head to www.MSswimathon.com.au for more information on the dates and locations of a swim near you and get involved in this great way to support the MS cause!

This edition of MS Life features Brendan O’Connor on the cover who was diagnosed with MS six years ago. Since his diagnosis, Brendan has continued to live his life to the full and with startling optimism. He embraces a positive outlook on life and is about to welcome his first child into the world with partner Lucy. Once having been confined to a wheelchair, Brendan tells his inspirational story of how MS Queensland’s physiotherapy services have helped him gradually regain his strength and better manage his MS.

As always, if you have any feedback about this edition of MS Life please get in touch by emailing me at [email protected]

Kindest regards

LETTER fROM THE EDITOR

To provide feedback, make a donation to MS Queensland or for more information please call 1800 287 367 email [email protected] or visit www.msqld.org.au

Acknowledgement: We wish to thank Brendan O’Connor for the use of his image on the cover of this publication. Photo by Ryan Smyth Photography.

www.msqld.org.au

www.twitter.com/#!/msqld

www.facebook.com/msqld

youtube.com/user/MSAustraliaQ

www.msqld.org.au

If you’d like to stay in touch with MS Queensland’s activities, events and physiotherapy programs visit:

If you have an MS-related question to ask Tim, our Manager of Specialist Education that can be answered in the next MS Life, please email Tim at [email protected] before 12 April 2013.

CoMInG SOON

nEw WEBSITE

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There are so many exciting things happening right now and in the next few months at MS Queensland! Here is a snapshot of a few:• $690,000fundinghasbeenawardedforMSresearch

projects in Queensland for 2013;• 2013MSHeroesnominationshavenowclosedandare

being judged, find out who the winners are on World MS Day,Wednesday29May.Checkoutwww.msqld.org.au /get-involved/msheroes for more information;

• inAprilandMayMSSwimathonsarehappeninginTownsville, Cairns, Sunshine Coast and for the very first time in Rockhampton!

• startinginApril,MSQueenslandisofferingafter-hoursYoga and Feldenkrais classes to help people living with MS better manage fatigue;

• tomakesurethe23rdMSBrissietotheBaybikerideisour biggest event ever, we’ve opened up registrations early so join me (yes I am riding!) along with 5,000 other people to raise MS awareness and funds for our vital work in the community; and

• thisyearWorldMSDaywillbeonWednesday29Mayand will focus on young people around the world living with MS – whether young by age or young at heart.

And while these busy and exciting activities are going on, MS Queensland will continue to offer quality services when and where you need them.

Take care,

Lincoln, CEO

P.S. Last edition I wrote about “hope” being one of our core organisational values. In response I received a letter in the mail that I wanted to share with you: “…hope begins in the dark; the stubborn hope that if you just show up and try to do the right thing, the dawn will come. You wait and watch and work: you don’t give up.” Anne Lamott.

Be assured that MS Queensland will never give up on you.

AUTUMN 2013

cOVER STORYBrendan O’Connor walks through MS diagnosis

ContEnts

fROM CEotheLucy & Brendan O’Connnor

PAGE 2–3 Letter from the Editor From the CEO

PAGE 4–5 Taking fundraising to the extreme – help Kiss Goodbye to MS!

PAGE 6–7 MS Queensland Brisbane Auxiliary takes Australia Day honour Grants give back to the MS community Long-standing MS CEO awarded OAM

PAGE 8–9 Brendan walks through MS diagnosis

PAGE 10–11 New after-hours physiotherapy and exercise therapy at Dutton Park Brisbane North and Peninsula physiotherapy clinics aquatic options Update – Carmel’s self-advocacy journey with her local MP After-hours service suitability

PAGE 12–13 150 Lottery Draws

PAGE 14–15 How Vikki lives positively with MS MS Dance Hall Committee Toowoomba supports MS MS Heroes Awards are back for 2013!

PAGE 16–17 Events that help people living with MS

PAGE 18–19 Vale Ann Langley

PAGE 20–21 Advocacy with Natalie Become a Member

PAGE 22–23 MS questions with Tim MS resources pwMS Support Groups update

PAGE 24 Calendar of events

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Already in the lead-up to World MS Daythisyear,Wednesday29May,some ‘out there’ supporters have started getting ready to kiss goodbye to MS. Their Facebook pages are gearing up for some cool events; all of them fun… and some of them pretty extreme!

One young woman is racing her red sporty classic Alfa Romeo, prominently decorated with the Kiss Goodbye to MS logo, to raise funds for MS. Another is riding a lawnmower from Melbourne to Sydney in Megan’s Great MS Mowdown! Yet another will collect piggybanks on a road trip around Tasmania by van and mobility scooter. And just recently, hundreds of swimmers (men and women) proudly wore red lipstick in an epic ocean swim from Sydney’s Palm Beach to Whale Beach. We anticipate many more colourful ideas from around Australia – all featuring red and kisses!

So the dare is there for you to take up. To anyone living with MS or with a connection to MS, why not pucker-up and get REDy to wear, dare and share as well? Here’s how you can.

During the month of May simply:1. Select a red lipstick (or for the men, a kiss lip sticker on your cheek or shirt collar) to wear;

2. Dare others to complete a Kiss Goodbye to MS challenge; and…this is the most important part…3. Share the idea by holding events and spreading the word on social media via Facebook, Twitter, Instagram or Pinterest.

Our aim is to raise awareness and, wehope,over$1millionfromacrossAustralia towards groundbreaking MS research and support services for people living with MS.

For those of you who are wondering how Kiss Goodbye to MS came about – the idea was dreamt up by a group of MS supporters in 2010. This innovative group wanted to highlight the fact that of the 23,000+ Australians currently living with MS, three out of four are women and the average age of diagnosis is around 30 – just when careers and family life tend to be taking off.

As we all know, a significant number of guys are also diagnosed with MS – and we didn’t want them to miss out on the fun! So as the campaign has developed we have given men plenty of chances to get involved – with one of the highlight’s of last year’s campaign being a Queensland builder who was ‘dared’ to wear red lipstick on his construction site for the day – he ended up raising morethan$5,000asaresult!

Kissing is all well and good, but lips are made for talking too. So get a conversation started in this positive and strong way to show support and help spread the word amongst your friends and family about MS. ‘Kiss Goodbye to MS’ has really gathered momentum in the past few years and we are sure that 2013 will be our best year yet. Remember, all money raised by the campaign in Queensland will go towards vital MS research and support services.

The best part is everyone can participate! To make a donation, find out more about holding an event or to buy branded ‘kiss’ merchandise visit www.KissGoodbyetoMS.org

For all the latest news ‘like’ the Kiss Goodbye To MS Facebook page www.facebook.com/KissgoodbyetoMS

TAKING fUNDRAISING TO THE EXTREME – KIssHOW WILL YOU WEAR, DARE OR SHARE TO KISS GOODBYE TO MS IN MAY 2013?

hELp us GoodByE to Ms!

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contribution to MS Queensland’s Op Shop at Dutton Park over the past two decades.

While their main function is to raise funds to support the work of Granston Lodge, a high care facility for those living with MS, proceeds from the MS Queensland Op Shop have also paid for the internal furnishings at the Annerley Apartments; a high-care accommodation facility for people with MS in Annerley.

Each of the volunteers who work in MS Queensland’s Op Shop became involved in the shop with little or no knowledge of MS. What motivates them is that their efforts are making a real difference to people living with MS in south-east Queensland.

The dedicated members of the MS Queensland Brisbane Auxiliary were recently awarded a 2013 Griffith Australia Day Award by Kevin Rudd, the Federal Member for Griffith on Australia Day. The award was given to them in recognition of their

MS Queensland Brisbane Auxiliary takes austraLIa day honour

Just recently, the Brisbane Auxiliarydonated$10,000toMSQueensland to pay for much needed physiotherapy equipment for those newly diagnosed with MS. The Pilates, Yoga, Tai Chi and Aquatic exercise equipment purchased is now available at MS Queensland’s Dutton Park Clinic gym, Brisbane North Clinic and at the Gold Coast Clinic.

In receiving their Australia Day Award, we at MS Queensland would like to recognise and thank the Brisbane Auxiliary who are a true inspiration to others. They should all be proud of their efforts and for their dedication to the MS community.

Our congratulations go once again to this amazing group of volunteers!

MS Queensland would like to thank the Jupiters Casino Community Benefit Fund and the Gambling Community Benefit Fund who recently awarded us two grants to improve our service delivery to people living with MS in Queensland. The Jupiters Casinofundinggrantof$3,400willprovidevitaleducationequipment to the Toowoomba region including the provision of wellness programs, fatigue management workshops and employment and MS workshops. The grant from the Gambling Fundof$18,600willgotowardsimprovingthebathroomfacilities in the Dutton Park Physiotherapy Clinic to enable better accessibility to facilities within the clinic. We look forward to making these improvements to our service delivery for you, our valued MS community.

Fund who recently awarded us two grants to improve our service

accessibility to facilities within the clinic. We look forward to making

Grants GIvE BaCK to thE Ms CoMMunIty

MS Queensland Brisbane Auxiliary takes

ay honourOVER THE YEARS, THIS AMAzING GROUP OF 15 WOMEN AND MEN HAVE NOT ONLY DEDICATED THEIR TIME TO RUNNING THE MS QUEENSLAND OP SHOP BUT HAVE ALSO RAISED VITAL FUNDS TO SUPPORT THOSE LIVING WITH MS IN SOUTH-EAST QUEENSLAND.

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awardEd oaMMs CEoLONG-STANDING

MS Queensland’s recently retired CEO, Trevor Farrell, was awarded a Medal of the Order of Australia at the recent Australia Day Honours ceremony held in Canberra.

Jonathan Loraine, Chairman of MS Queensland said there was no Queenslander more worthy of such recognition for long-standing commitment to the community.

“For three decades, Trevor Farrell was a pivotal member of the multiple sclerosis community in Australia and excelled in advocating the cause both nationally and internationally,” Jonathan said.

“Sincetheearly1980’sTrevor’svision,dedicationandleadershiphaveset the foundations for an ever-expanding MS Society in an often volatile not-for-profit environment.”

Some of Trevor’s major achievements included developing Queensland’s regional program to reach a greater number of people living with MS; developing the ‘MS Info Line’ in 1994;introducingthe‘MSClinic’attheRoyalBrisbaneandWomen’sHospitalin1995;creatingthe‘MSBrissieto the Bay’ bike ride fundraiser which is now in its 23rd year and raises much needed funds for people with MS; and the implementation of deinstitutionalised care to revolutionise traditional methods of delivering assisted accommodation to people with MS.

“Living with MS himself, Trevor led the organisation through significant changes and gave a voice to thousands of people living with MS when they needed it most,” Jonathan Loraine said.

In late 2011 Trevor retired as CEO for MS Queensland and recently held the position of Acting CEO for MS Australia. MS Queensland congratulates Trevor on this outstanding personal achievement.

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BrEndan’s physIo journEy wIth Ms

Since his MS diagnosis six years ago, Brendan has changed his focus and, with the help of MS Queensland’s services, is living his life with startling optimism. Recently, Brendan has shared his personal story on camera for MS Queensland, which has already been watched by hundreds of viewers on YouTube (www.youtube.com/MSAustraliaQ).

“I was diagnosed with MS probably about six years ago and the first neurologist I saw told me to wait three years and ‘see what happens’. That was a long wait.”

Within a couple of years after his diagnosis, Brendan had become confined to using a wheelchair, but still tried to maintain a positive mind and attitude.

“You have all your normal aspirations and dreams and all it takes is one phone call and you’re thinking ‘I’ll be a crippled invalid’– it was quite a big change to my life.”

Three years later, Brendan decided to meet with a psychologist at MS Queensland who, according to Brendan, was a real turning point for him.

“The psychologist probably grabbed me at the right time when I was in a very bad place and he helped me through that. I thought I’ll get whatever help is required and just see through this thing that is MS.”

Brendan said that using the psychologist’s service helped him better accept the disease and gave him hope to manage and live with MS the best he can. He also decided to commence a three-month physiotherapy course, which was run by MS Queensland.

MANY PEOPLE HAVE SHONE THROUGH THEIR MS AND HAVE LIVED THEIR WHOLE LIFE SHARING INSPIRATION TO THE WORLD. BRENDAN O’CONNOR IS ONE OF THOSE PEOPLE.

“As soon as I started the physiotherapy courses at MS Queensland I saw what was achievable.”

“I did a course at the Dutton Park Clinic on general agility and at the start I was in a real black mood, I couldn’t see any way out, but at the end of the course it was really strange.”

The “strangeness” was Brendan’s realisation that he was gradually learning to stand and walk again.

“I remember one day, I stood up by myself in the bathroom and it was a groundbreaking thing. I was just grinning from ear to ear. It was really quite something special.”

Brendan says he owes his improved mobility and positive thinking to MS Queensland and the services we are able to provide for people living with MS.

“I don’t know what would’ve happened if I didn’t have access to those services. The Physiotherapy Department is just fantastic, I don’t think they actually realise what an important job they actually do.”

“They may think they are just doing their jobs but they are changing people’s lives.”

Brendan’s story is just one of hundreds of clients who have seen benefits from MS Queensland’s physio and exercise therapy services. For more information on our services please contact our InfoLine on 1800 177 591 or visit www.msqld.org.au

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Morethan2,880peopledescendedonSouthBankfora10km walk along the Brisbane River under the light of a full moon,toraiseatotalof$300,176forMS.

The money raised helps MS Queensland fund vital support services for people living with MS across the State.

Our CEO, Lincoln Hopper said we smashed last year’s fundraisinggoalof$180,000threeweeksbeforethisyear’swalk, which shows the incredible level of enthusiasm of all participants.

The course took families, corporate teams, community groups and a number of people living with MS along the Brisbane River, beneath the Kangaroo Point Cliffs, across the Story Bridge, through the Botanic Gardens and back over the Goodwill Bridge to South Bank.

A number of families and work colleagues also took part together, taking the opportunity to dress in an array of weird and wonderful costumes for the MS cause.

“The brilliant team of Star Wars Stormtroopers was definitely a crowd favourite this year and they completed the MS Moonlight Walk in full replica costume,” Mr Hopper said.

One of the top fundraisers was 35-year-old Nicole Gallagher, who was diagnosed with MS last year just years after her own sister was diagnosed with MS. Ms Gallagher

completed the walk with her team, Madly Striving for a Cure for MS, who together have raised almost $10,000.

“As my sister and I both have MS we are madly striving for a cure. The support people have shown by donating is amazing and

the awareness of what MS is in the community has definitely grown

since last year,” Nicole said.

NEW AfTER-HOURS SERVIcE

PHYSIOTHERAPY AND EXERcISE THERAPY AT DUTTON PARKOur after-hours Service through our Dutton Park Clinic is a relatively new initiative, which ran for the first time last year. We have also trialled a ‘pilot’ yoga class at our Brisbane North Clinic located at Weller Gardens, Chermside.

Due to the positive response, we are delighted to share that our after-hours Service is being conducted again this year. The first Aquatics and Pilates programs are nearing the end of their ten week series – five weeks of Aquatics and five weeks of Pilates – and we hope to be able to make this program available again at the end of the year.

The Aquatics program introduces many people to a new style of exercise. It is a ‘cool’ exercise option in every sense of the word and allows a greater degree of freedom of movement than exercising ‘on land.’ Challenging your balance and achieving a greater stretch as well as strengthening and flexibility can be so much more fun in a pool environment! Just ask anyone who is currently participating in the program.

The Pilates program is conducted on the mats in the gym area at the Dutton Park Clinic. Pilates is a great method to teach you better control of different muscle groups.

KimberleySimpsonwasafull-timeYear4teacherupuntil2011 when she had an MS relapse. She felt her future was uncertain as she was unable to hold her own head up on some days due to fatigue. To improve her well-being Kimberley decided to complete MS Queensland’s after-hours Pilates and Aquatics sessions and has since been able to return to part-time work. She thinks herself very fortunate and is thankful for the wonderful help and service from the Physiotherapy staff at the Dutton Park Clinic.

“The course was fantastic! Pilates gave me this incredible core stability that I’ve never had before.”

“I absolutely loved the positive environment! The staff and everyone partaking in the course

were amazing, nothing was too hard yet the results were so rewarding.”

“The course was fantastic! Pilates gave me this incredible core stability that I’ve never had before.”

“I absolutely loved the

were amazing, nothing was too

BRISBANE NORTH AND PENINSULA PHYSIOTHERAPY cLINIcS

AQUATIc OPTIONS

Did you know that the aquatics program at our Dutton Park Clinic is also complemented with aquatic options by our staff at the Brisbane North and Peninsula clinics? These two clinics offer sessions throughout the year, involving four weeks of ‘Aquatic Exercise’ at carefully selected public pools in the Redcliffe and Chermside areas. These programs cover the basics of an aquatic program and enable people living with MS to independently participate in a home exercise program either in their own pool or at a public facility. At the end of the four week program each participant is provided with a laminated aquatic exercise plan for their own use.

For those that prefer to participate with others or under instruction, MS Queensland does refer on to independent providers within the Northside area. At present we have one listed service in Chermside that deals exclusively with people living with MS and can refer to other aquatic services located at Albany Creek, Redcliffe and Chermside pools as needed.

For more information on our aquatics offerings please contact Joy Constantine from MS Queensland on 0417 705 013 Tuesday – Thursday.

cARMEL’S SELf-ADVOcAcY jOURNEY WITH HER LOcAL MP

Here’s how a lady living with MS worked with her local member for Brisbane City Council and achieved a positive outcome.

Carmel Cock was diagnosed with primary progressive MS in 1998 and over the years has experienced a gradual loss of mobility in her arms and legs. She now lives in our Annerley Apartments and remains engaged with her local community, taking regular outings to meet friends and family.Recently, while trying to manoeuvre her mobility scooter along the ‘atrocious’ footpath on Waterton Street in Annerley, wheelchair bound Carmel Cock was continuously losing

take the matter up Council, urging them footpath. Writing a a simple task, but mously challenging. hours to type the time) to her local in control and

system.

writing to you living and using ccess shops and re in close proximity. At this point, I would like to inform you that we are all living in WHEELCHAIRS and with the atrocious condition of the footpath we are finding it difficult to get out in the community.”

“I would like to invite you and some staff members to accompany myself to

IF YOU LIVE WITH MS, YOU SHOULD NOT UNDERESTIMATE THE IMPACT SELF-ADVOCACY CAN HAVE ON YOUR WELL-BEING, SELF-CONFIDENCE, AND PRIDE.

SELF ADVOCACY. THE ROAD TO SUCCESS Carmel Cock

walk from the corner of Ipswich Road to Bower Street and afterwards come back to our Inclusive Living centre at number 33,” she said.

Within three days of sending the letter, Carmel had a reply from the Member for Tennyson Nicole Johnstone who assured her that the footpath would be fixed as soon as possible. This was a very positive, timely outcome for Carmel and the residents at our accommodation facility at Annerley, and just one of many that people living with MS have achieved through self-advocating in their community. Like Carmel you too can bring about change in your community. Her message to others in a similar position is to, “be positive and do what you feel is right.”

For more information on how to self-advocate, please contact our Advocacy Manager Natalie Walsh on 07 3840 0823 or [email protected]

CARMEL’S LETTER TO HER LOCAL MEMBER – 22ND JULY 2012

Dear Nicole

RE: WATERTON ST. ANNERLEYFurther to a telephone conversation with a staff member from your office, I am writing to you on behalf of residents living and using the above mentioned Street to access shops and Doctors Surgeries that are in close proximity. At this point, I would like to inform you that we are all living in WHEELCHAIRS and with the atrocious condition of the footpath we are finding it difficult to get out in the community. I would like to take some time to describe it to you.

htiw etercnoc htiw dial si tI •

what (being a layperson) I would say is separated by rubber strips. The concrete has lifted causing a major rise of at least two centimetres. This occurs all the way along the street.

.seloh top suoremun era erehT •

a edistuo nekorb si etercnoc eh

T •future construction site.

secalp fo rebmun a ni htap ehT •

is slanted towards the road, giving the driver and carers the feeling that their chairs are going to tip over.

ssorc ot su elbane ot spmar ehT •

roads are too steep – this has caused panic with the driver being afraid of not getting across the road before traffic comes in any direction.

ot osla era syawevird ehT •

steep and some are raised a minimum of three centimetres from the road.

As you have read this footpath is in need of repair. These may only seem like minor problems to most but they are a major worry for people with a disability and their carers.

I would like to invite you and some staff members to accompany myself to walk from the corner of Ipswich Road to Bower Street and afterwards come back to our inclusive living centre at number 33.

Hoping to hear from you soon.Sincerely, Carmel Cock

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cARMEL’cARMEL’cARMELS SELf-ADVOcAcAcA Y

Hererer ’s howworked ked k with Brisbane Citypositive outco

Carmel Cockprimary progrover the yearsgradual loss of legs. She nowApartments anher local communioutings to mee

RecentlRecentlR y, while trying to manoeuvre her mobility scooter along the ‘atrocious’ footpath on Street in Annerle

IF YOUYOUY LIVE WITH MS, IMPAPAP CT SELACT SELASELF-CONFIDENCE, AND PRIDE.

SELF SELF SELF ADTHE RTO SUCCESSupdatE

Since the last edition of MS Life, Carmel was escorted by her local City Council representative down the broken footpath of Waterton Street,

outside Annerley Apartments. Councillor Nicole Johnston is confident that she can begin proceedings with the local council to fix the problem within

the next few weeks. At the time of print, Carmel was also invited to speak at City Council. For more information on Self Advocacy, see page 23.

For further details on Carmel’s journey see ‘Carmel’s MS Story’ on our YouTube channel www.youtube.com/MSAustraliaQ

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suItaBILIty Our after-hours Service is designed for people who are generally working and have difficulty attending the programs offered during the day. It is best suited to people with MS who are independently mobile and don’t require the use of a walking stick at any time. We offer specialised neurological physiotherapy assessments to anyone living with MS in addition to the group base activities, by appointment.

Our next after-hours session is ‘Yoga’ commencing on a Tuesday from 16Aprilto4Junefrom5:30pm–6:30pm.ForpeoplelivingwithMS,yogahas been found to improve energy levels; decrease fatigue and assist with stress reduction in addition to improving muscle and joint flexibility. Yoga encourages the development of deeper self-awareness, self acceptance and to surrender to whatever you are feeling in your life at any time.

We are also planning ‘Feldenkrais’ sessions which involve learning how we move and how to move more easily through awareness gained by performing simple movements. The goal of Feldenkrais is to teach the body how to move more efficiently, leading to good movement patterns, reduced fatigue and better postural alignment particularly during activities of daily living. Feldenkrais is very popular with people living with MS in Canada. MS Queensland’s classes will be held at the Dutton Park Clinic and will be run in June this year, on Saturdays for eight weeks. Dates and time will be released in due course.

Information regarding our after-hours Service can be found on the MS Queensland website www.msqld.org.au or by calling the MS Queensland InfoLine on 1800 177 591. Alternatively you can contact Linda Wilson-Marks at the Dutton Park Clinic on 07 3840 0841. Linda will be able to assist you with your enquiries and bookings, and will direct you to a physiotherapist if you have queries about your eligibility to use this service.

So why not come along and have a laugh while getting some worthwhile exercise! Spaces are limited so make sure you book early.

Here’s how a lady living with MS worked with her local member for Brisbane City Council and achieved a positive outcome.

Carmel Cock was diagnosed with primary progressive MS in 1998 and over the years has experienced a gradual loss of mobility in her arms and legs. She now lives in our Annerley Apartments and remains engaged with her local community, taking regular outings to meet friends and family.Recently, while trying to manoeuvre her mobility scooter along the ‘atrocious’ footpath on Waterton Street in Annerley, wheelchair bound Carmel Cock was continuously losing her chin hold.

Carmel decided to take the matter up with Brisbane City Council, urging them to fix the neglected footpath. Writing a letter may seem like a simple task, but for Carmel it is enormously challenging. It took Carmel eight hours to type the letter (one letter at a time) to her local member using her chin control and Bluetooth computer system.The letter read: “I am writing to you on behalf of residents living and using [Waterton] Street to access shops and Doctors surgeries that are in close proximity. At this point, I would like to inform you that we are all living in WHEELCHAIRS and with the atrocious condition of the footpath we are finding it difficult to get out in the community.”

“I would like to invite you and some staff members to accompany myself to

IF YOU LIVE WITH MS, YOU SHOULD NOT UNDERESTIMATE THE IMPACT SELF-ADVOCACY CAN HAVE ON YOUR WELL-BEING, SELF-CONFIDENCE, AND PRIDE.

SELF ADVOCACY. THE ROAD TO SUCCESS Carmel Cock

walk from the corner of Ipswich Road to Bower Street and afterwards come back to our Inclusive Living centre at number 33,” she said.

Within three days of sending the letter, Carmel had a reply from the Member for Tennyson Nicole Johnstone who assured her that the footpath would be fixed as soon as possible. This was a very positive, timely outcome for Carmel and the residents at our accommodation facility at Annerley, and just one of many that people living with MS have achieved through self-advocating in their community. Like Carmel you too can bring about change in your community. Her message to others in a similar position is to, “be positive and do what you feel is right.”

For more information on how to self-advocate, please contact our Advocacy Manager Natalie Walsh on 07 3840 0823 or [email protected]

CARMEL’S LETTER TO HER LOCAL MEMBER – 22ND JULY 2012

Dear Nicole

RE: WATERTON ST. ANNERLEYFurther to a telephone conversation with a staff member from your office, I am writing to you on behalf of residents living and using the above mentioned Street to access shops and Doctors Surgeries that are in close proximity. At this point, I would like to inform you that we are all living in WHEELCHAIRS and with the atrocious condition of the footpath we are finding it difficult to get out in the community. I would like to take some time to describe it to you.

htiw etercnoc htiw dial si tI •

what (being a layperson) I would say is separated by rubber strips. The concrete has lifted causing a major rise of at least two centimetres. This occurs all the way along the street.

.seloh top suoremun era erehT •

a edistuo nekorb si etercnoc eh

T •future construction site.

secalp fo rebmun a ni htap ehT •

is slanted towards the road, giving the driver and carers the feeling that their chairs are going to tip over.

ssorc ot su elbane ot spmar ehT •

roads are too steep – this has caused panic with the driver being afraid of not getting across the road before traffic comes in any direction.

ot osla era syawevird ehT •

steep and some are raised a minimum of three centimetres from the road.

As you have read this footpath is in need of repair. These may only seem like minor problems to most but they are a major worry for people with a disability and their carers.

I would like to invite you and some staff members to accompany myself to walk from the corner of Ipswich Road to Bower Street and afterwards come back to our inclusive living centre at number 33.

Hoping to hear from you soon.Sincerely, Carmel Cock

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SeipelHealthA division of Seipel Group Pty Ltd

Call 1300 734 735 today for further information or visit our website - www.seipelgroup.com.au Note: This is a paid advertisement and MS Queensland makes no representation about the product’s efficacy.

For almost 25 years we have been offering some of the most exclusive vehicles, amazing prizes and unbeatable odds in Australia. The program’s ongoing relevance and strength in the market is one of the largest contributors to MS Queensland’s success as an organisation over the past two decades. Reaching Draw 150 is an amazing achievement and we thank those who have supported people living with MS by taking part in our Limited Edition Art Unions.

Congratulations as well to all those 150 people who have won luxury vehicles and holidays by purchasing a ticket in our draws or signing up to our MS Autobuy program.

But the real winners are people living with MS. Since the lottery program began, the profits from our Limited Edition Art Union have contributed over 15 million dollars to MS Queensland, which has been directly used to fund services that we have been able to provide for free, such as our Regional Service Coordinators and our expert neurological physiotherapists.

To celebrate 150 draws and reward our most loyal supporters, our 150th draw will not only give away a Mercedes-BenzC63AMG,butwillalsoofferourMSAutobuy members the exclusive chance to win the brand new Mercedes-Benz A250 Sport.

To purchase a ticket in the Limited Edition Art Union, or to become an MS Autobuy member call 1800 060 210 or go to www.mslimitededition.com.au

150lottery draws

The MS LiMiTed ediTion ArT Union hAS been rAiSing fUndS for MS QUeenSLAnd Since iT LAUnched in 1988, And ThiS MonTh we Are LAUnching oUr 150Th drAw.

froM <ThiS

To ThiS >

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“Did you ask, how am I? You’re really kind to ask. I’m fine thanks. No, I’m more than that, I’m fantastic. You say I look well, thank you, I feel great. I’m actually not ill, I just can’t walk too far.”

If you’ve ever been to Indooroopilly Shoppingtown you’ll be aware that between Target and Myer there’s a daunting void, and unless you have a shopping list for Woolworths, you can waste an awful lot of steps crossing the chasm. I count steps. Every one isvaluable,worth$1,andprecious.Wherever possible I ask for help, delegate, or take a different route. No one minds if they know they’re storing 20 steps for you, which, when added up,mighttotal100lateron.Like$100in the bank - 100 steps can get you a long way. So today, with my account full of the steps I’d saved earlier, I opted for determination instead of delegation and took myself off to K-Mart. I “did” the Target end on Monday but couldn’t face the chasm or the escalators. I use a very flashy stick these days but was still relieved when I reached the security of the shopping trolley. I’m able to cover twice as much ground this way, and thus found myself being towed into Myer.

It’s been such a hot day so the sanctuary of the air-conditioned shops suited me just fine, but I needed a cold drink and a battery recharge so I flopped at one of the cafes to watch

the world go by. Then a sign in a shop window caught my eye, one of those trendy tin things, and on it was my inspiration to put pen to paper. It read:

Live with intention. Walk to the edge. Practice wellness. Play with abandon.

LAUGH. Choose with no regret.

Continue to learn. Appreciate your friends.

Do what you love.

I retired four years ago and have lived with MS for three of those years.

Every morning I say out loud to my gorgeous husband Bill, “guess what, we don’t have to go to work today.” Bill retired at the same time as I did and is engrossed in his passion for music and making guitars, and I run my gift wrapping and card making classes. It’s great that we both share a creative streak and spend a lot of time laughing together. Every day has a plan and intention and life is pretty good. We are very fortunate.

Keeping active is very important to me so I joined a ladies fitness club. Believe me, there are days when I’d rather not go but I push myself and always feel better physically, plus it puts my head in a good place, positive and in control.

The camaraderie there is important to me and suits my gregarious nature.

Although creative, I’ve never been one for cooking unless it’s beans or eggs! It’s fortunate then that Bill is in his element brewing up a storm in the kitchen. We try to eat really healthily. I’ve cut out meat and increased my Omega 3, I suppose you might call me a vegequarian. I figure if I keep myself as well and fit as I can then I’ll be in the best situation possible for when a cure comes along. Which it will.

You know, people are quite surprised when they enquire about my “bad leg” and I tell them I have MS. They’re shocked at first but I hate it to be a taboo subject, so it’s great when they realise I’m at ease speaking about it and therefore they’re not uncomfortable about asking questions. A lot of people are unaware of what MS is all about so it’s important to be informed when there are so many myths and scary stories out there.

Bill and I regard my MS as something we both have, and in some ways it must be much harder for him to deal with. It’s not easy to put yourself in someone else’s shoes. Believe me; I do know how lucky I am to have him and all the love and encouragement he hands me without question or expectation. We are very, very lucky.

There are three things I’d add to the list on the tin sign to complete the Mantra:• surroundyourselfwithpositive

people;• bethankfulforwhereyou’reat;and• theglassisalwayshalffull.

HOW VIKKI LIVESHOW VOW VOW IKKI LIVES

posItIvELywIth Ms

WRITTEN BY VIKKI HURST

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Ms hEroEs AWARDS ARE BAcK fOR 2013!

MS DANcE HALL cOMMITTEE TOOWOOMBA SUPPORTS MS

Yes, that’s right, the MS Heroes Awards are back again for 2013! It’s the recognition program that offers the MS community an opportunity to thank individual heroes in their lives, raise awareness of MS and join the global movement that is World MS Day.

ThisyearWorldMSDaywillbeonWednesday29Mayandwill focus on young people around the world – whether they are young or young at heart – living with MS.

Nominations for this year’s program have now closed. Thank you to everyone who sent in your MS Heroes nominations, which are currently being judged. Find out who thewinnersareonWorldMSDay,Wednesday29May.

If you have any questions about the 2013 MS Heroes program please contact Cassie Moore from MS Queensland on 07 3840 0825. We wish all nominees the best of luck!

This year’s MS Hero award categories included:

1. Young Person of the Year: based on the 2013 World MS Day theme ‘Young People with MS’

2. Advocate/Ambassador of the Year

3. Employer of the Year

4.VolunteeroftheYear

5. Carer of the Year

Recently, MS Queensland CEO Lincoln Hopper visited the MS Dance Hall Committee Toowoomba to receive a generous donation on behalf of MS Queensland.

The occasion celebrated 35 years of fundraising for MS Queensland by members of the MS Dance Hall CommitteeToowoomba,totallingmorethan$250,000.

TheoriginaldancehallstructurewasownedbyMSQueenslandinthe70’s,untilitwassettobeknocked down. Instead, the hall was transferred to the Toowoomba University campus where today, committeemembersmeeteverySaturdaynightfrom8.00pm–12.00am.EachSaturdaynightisfilled

with great food and friendly company, with all donations and proceeds from weekly raffle prizes helping fund vital research into a cure for MS.

This particular night was especially special and recognised a number of committee members who retired – as well as the long-standing band!

MS Queensland appreciates and congratulates each and every one of the MS Dance Hall Committee Toowoomba for their time-

honoured community fundraising efforts.

Recently, MS Queensland CEO Lincoln Hopper visited the MS Dance Hall Committee Toowoomba to receive a generous donation on behalf of MS Queensland.

The occasion celebrated 35 years of fundraising for MS Queensland by members of the MS Dance Hall Committee

Theknocked down. Instead, the hall was transferred to the Toowoomba University campus where today,

Pictured: Our 2012 MS Inspiration Award Highly Commended recipient, Jack Brook with his mum Regina.

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The MS Enerflex Brissie to the Bay bike ride has been part of the Brisbane cycling scene for over two decades. Our famous ride is known for its outstanding atmosphere and

diverse range of course options that allow riders from all skill levels to pick up their bike and show their support for people living with MS.

There is the family friendly 10km ride around the Brisbane Riverside, the scenic 25km ride to Balmoral and back, the classic 50km ride to Wynnum and back or the challenging

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2013 IS GOING TO BE A HUGE YEAR fOR MS QUEENSLAND fUNDRAISING EVENTS. IN ADDITION TO OUR REGULAR ANNUAL EVENTS, TWO NEW MS SWIMATHONS AND A cYcLING EVENT IN fRANcE WILL BE ADDED TO THE cALENDAR!

MS ENERfLEX BRISSIE TO THE BAY BIKE RIDE IS BAcK AND HITTING 2013 WITH A BANG!

MS cYcLE DE fRANcE

diverse range of course options that allow riders from all skill levels to pick up their bike and show their support for people living with MS.

There is the family friendly 10km ride around the Brisbane Riverside, the scenic 25km ride to Balmoral

This new epic cycling event being held in France this year is continually growing in participant numbers and fundraising dollars!

The MS Cycle de France has an amazing group of cyclists who have taken up the challenge to cycle 525km through theFrenchAlpsandraise$80,000forMSQueensland.

OnWednesday26JunetheMSCycledeFranceriderswillembark on an incredibly challenging cycle tour from Archamps (North France) to Monte Carlo (Monaco) peddling up, down and around some of the highest roads in Europe. After five days of ‘hard yakka’ cycling, the group will be rewarded by witnessingthe4thstageoftheTourdeFrancecyclealongthestreets of Nice; during its 100th year anniversary!

All MS Cycle de France cyclists, including our very own Project Manager Bianca Williams, are training hard to ensure a successful cycle up… and down the 2000m+ high mountains en route. Each of the riders are also working hard to fundraise their committed amountof$5,000dollarseachtofundvitalphysiotherapy services for thousands of Queenslanders living with MS.

100km course to Wellington Point and back – all starting and finishing in South Brisbane’s Musgrave Park.

Over the past five years, the MS Brissie to the Bay has raised aremarkable$2.1milliontowardsthefightagainstMS.Thisyear we are aiming to create the largest impact yet by raising $1.2milliondollarsinourquestforaworldfreefromMS.

So save the date Sunday 23 June. If you are able, slip into some lycra or invite your friends and family to join the ride. Help us spread the word about this year’s Brissie to the Bay. To register or for more information visit www.BrissietotheBay.com.au

If you or a cycling buddy are interested in joining the MS Cycle de France team, there are still spots available. Check out the website www.MScycledefrance.com.au for more information. Alternatively, you can support a rider by sponsoring them – simply jump onto the website, pick a rider and donate to their fundraising page.

You can also follow the group on this epic adventure via the MS Cycle de France Facebook page www.facebook.com/MscycleDefrance or Bianca’s Blog on the cycle website. Ms

MOONLIGHT WALK

Save the date – friday 18 October 2013 to join us for the marvellous

MS Moonlight Walk! Last year’s event sawatotalof2,882walkersturnoutto

show their support for people living with MS. Registrations will be launched earlier this year,

head to www.MoonlightWalk.com.au for more event information.

UPcOMING MS SWIMATHONS HELP US ‘KISS GOODBYE TO MS!’H

The MS Swimathon is a great fundraising initiative held across Queensland to raise vital funds to support people living with MS. We’re dedicated to running eight swims this year to ensure our support services continue to benefit people living with MS across the state.

Join us and register to dive in to support all people living with MS. This month events will be held in Cairns on Saturday20AprilandinTownsvilleonSaturday27April.Registrations are open, so jump online today and register at www.MSswimathon.com.au

Two more events will be held in Rockhampton and the Sunshine Coast in May – check out www.MSswimathon.com.au for further details.

This May we are looking for community fundraisers to get involved during MS Awareness Month and register your special MS event to help us ‘Kiss Goodbye to MS’!

All donations made on the Kiss Goodbye to MS website go towards preventing and treating the symptoms of MS, as well as providing support and services for people in Queensland living with MS. Australian scientists are optimistic that a cure can be found and it is your support that will make this happen. So jump online and register your event today at www.KissGoodbyetoMS.org

go towards preventing and treating the symptoms

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TO HONOUR ANN’S SERVICE TO THE MS COMMUNITY, MS QUEENSLAND WILL BE CREATING AN ANNUAL FUNDING SCHOLARSHIP IN ANN’S NAME THAT WILL ENABLE THE CONVENORS OF QUEENSLAND pwMS SUPPORT GROUPS TO MEET TOGETHER ONCE A YEAR TO SHARE IDEAS, TO ENCOURAGE AND SUPPORT THEIR LEADERSHIP AND TO FIND NEW WAYS OF MEETING THE NEEDS OF PEOPLE WITH MS THROUGH THE QUEENSLAND pwMS SUPPORT GROUPS.

the Brisbane Housing Company and a President of the Logan Local Ambulance Committee.

In1997AnnwasnamedLoganCitizen of the Year and was also awarded a Paul Harris Fellowship from her local Rotary Club. Ann was the winner of the 2002 John Studdy Award (MS Australia’s most prestigious national award in recognition of outstanding and selfless servicetotheSociety)andthe2007James D. Wolfensohn Award for International Person with MS.

Long-term member Ann Langley recently passed away following a short battle with cancer. Ann was a larger-than-life personality who faithfully served the needs of people with MS in Queensland and nationally, for many, many years.

Ann was a mentor and an inspiration to many people living with a disability. As an outspoken advocate, she was also a positive role model for people with MS.

Ann was an exceptional ambassador for MS and contributed enormously to enhancing the influence and position of people with MS throughout Australia.

Amongst other things, Ann served on the MS Queensland Board, was joint instigator of the Logan pwMS Support Group, Chair of PwMS Queensland, President of pwMS Australia and Editor-in-Chief of the national MS Life magazine. Ann also made a significant contribution through many other community organisations including being the Founding Chair of Transit Care, a Board member of

ann’s Ms storyLike so many people with MS, Ann’s early symptoms went unrecognised for many

years. Ann’s six children were aged between five and fifteen when her husband died ofcancerin1972.DespiteherincreasingMSsymptoms,Annreturnedtoworkfull-time

as a musician and music teacher after her husband’s death.

Annwas54whenshewasfinallydiagnosedin1988.ThisoccurredwhenMRIsbecameavailable in Queensland. Two years after the diagnosis, she retired from teaching. While music

was her passion, her practical nature accepted that her MS had put an end to her professional music career.

The challenges of those hard times fostered Ann’s fierce independence and her intense focus on ‘ability’ rather than ‘disability’. In her later years Ann walked with the aid of a stick, but her primary MS symptoms, like those of many people with MS, were not visible.

Ann’s passion, tenacity and courageous spirit are the hallmarks of her leadership and a defining part of the wonderful legacy she will leave with us and the many lives she has touched.

ann LanGLEyVALE

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Were you young when diagnosed with MS? Or are you young at heart?

This year is the MS International Federation (MSIF) Year of Young People. As the most commonageofdiagnosisofMSisbetween20and40whencareerandlifecommitments are at their peak, we are excited that the focus for the MSIF this year is for ‘young people’. Meet our two new MS Queensland Young Ambassadors Rachel Kerr and Eleanor Rigden.

In understanding our MS Queensland community, we know that we are not necessarily defined by our age, and that the ‘Year of Young People’ will relate to people who were diagnosed with MS at a young age or are young at heart and living with MS.

We hope you have seen MS Queensland’s Living Positively with MS campaign that was launched by MS Ambassador Mayor Paul Pisasale last year. We would like to, once again invite you to share your story of living positively with MS – open to everyone who is young at heart!

All stories will be sent to Mayor Pisasale and together with MS Queensland’s CEO, Lincoln Hopper and Chairperson of People living with MS Support Groups, Jenni Saunders they will discuss the wonderful submissions. One lucky contributor will share lunch with Mayor Pisasale and MS Queensland Advocacy Manager, Natalie Walsh at Drift Brookwater in May.

Please send us your story of 250 – 500 words of how you live positively with MS to me at [email protected] by Sunday 14April.

Were you young when diagnosed with MS? Or are you young at heart?

This year is the MS International Federation (MSIF) Year of Young People. As the most commoncommitments are at their peak, we are excited that the focus for the MSIF this year is for ‘young people’. Meet our two new MS Queensland Young Ambassadors Rachel Kerr and Eleanor Rigden.

In understanding our MS Queensland community, we know that we

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EMS ‘YEAR Of YOUNG PEOPLE’ – SHARE YOUR STORY

ItcurrentlycostsMSQueensland$30,000peryear to produce and distribute MS Life and current membershipsubscriptionsprovide$12,000peryear–a significant shortfall each year.

So if you value the publications and services MS Queensland provides then please show your support by joining today. For afeeofjust$33youcanjoinusforayear,oryoumightconsiderbecomingaLifeMemberforjust$330toavoidworryingaboutpayingyour membership ever again! The strength of MS Queensland is in its active and committed members and we’d welcome your contribution to our vital work.

For more information on membership call 07 3840 0888 or visit www.msqld.org.au/get-involved/become-a-member today!

Are you a member of MS Queensland? Membership withus,whichisjust$33ayear,helpsusprovideinformation and education about MS and leading edge MS research on finding a cure for multiple sclerosis. This includes the information you receive through the 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 this 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.

MEMBErBEcOME AOME A

DRIVE YOUR MEMBERSHIP

FURTHER JOIN ONLINE AT

WW

W.M

SQLD.ORG

TO: Hon Secretary

Application Date: ____ /____ /____

MS Australia - QLD

Phone: (07) 3840 0888

Locked Bag 370

Fax: (07) 3840 0813

Coorparoo DC QLD 4151

Email: [email protected]

Dear Sir,I wish to submit an Application for Membership of MS Australia - QLD.

(1 July 2012 – 30 June 2013)

DETAIlS ARE AS fOllOwS:

...........................................................................................................

.............................................. Phone No .........................................

Email ...............................................................................................................

Date of Birth ....................................................................................................

PlEASE INDIcATE YOUR INTEREST IN THE MS AUSTRAlIA - QlD

Person with MS

Just want to support the cause

Relative of person with MS

Other ........................................

(eg spouse, sister, uncle, etc)

Unrelated carer

MY SUBScRIPTION, AS SHOwN BElOw, IS ENclOSED:

Ordinary $ ...........................

Life

$ ...........................

Donation $ ...........................

(All donations $2 and over are tax deductible)

TOTAl $ ...........................

PAYMENT DETAIlS:

Please make cheques payable to Multiple Sclerosis Society of Queensland

OR please charge my Visa

M/Card Amex

Diners

Card No __ __ __ __ / __ __ __ __ / __ __ __ __ / __ __ __ __

Expiry Date__ __ / __ __ Name on card .........................................................

Mail me a copy of the full Annual Report each year

Email me a digital copy of the full Annual Report each year

Mail me a copy of MS Life magazine

Email me a digital copy of MS Life magazine

Services are delivered to registered clients on the basis of individual assessment and identified needs.

Membership does not automatically entitle you to receive services – people with MS must register as a

client and provide proof of diagnosis. For more information call the Information Line on 1800 177 591.

APPlIcATION fOR MEMBERSHIP

ww

w.MSQlD.ORG

MS1077_MembershipFlyer_Art02_sd.indd 2

28/05/12 8:55 PM

Are you a member of the MS Society?

Membership with us, which is just $22 a year,

assists us in providing information 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 Australia – QLD

members only. But this comes at a substantial cost and

we need your support. It currently costs the Society

$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

Australia - QLD provides then please show your

support by joining the Society today. For a fee of

just $22 you can join us for a year, or you might

consider becoming a Life Member for just $220 to

avoid worrying about paying your membership ever

again! The strength of our Society is in its active and

committed members and we would welcome your

contribution to our vital work.

As a financial member you’ll also have the opportunity

to have your say on the exciting future plans of our

MS Society at the Annual General Meeting (AGM) in

November.

To become a member, simply complete the form

overleaf and return it to the MS Society as soon as

possible. On behalf of all Queenslanders living with

MS, we look forward to your membership support

for a world free from MS and its devastating impact.

Lincoln Hopper, CEO

HAVE YOUR

SAY!Help support the

MS Society and

it’s good work!

Lisa & Sandy tell...

“We Have MS,

But It Doesn’t Have Us!”

g control

MS Awareness Week 26 May - 4 June

LIFEGiving life back

QUEENSLAND26 MAY 2010

worldMSday

JOIN THE GLOBAL MOVEMENT!

Autumn 2010

Activities happening all

around the world!

Find out how you can take part

Life at Annerley

The official launch

Jonathan Loraine and Bruce Milligan

MS Life

MS Australia – QLD

Autumn 2011

WORLD MS DAY

How you can help the global

campaign on employment

and MS Australian of the Year

GET PHYSICAL

The link between exercise

and quality of life for people

with MS

BRISSIE TO THE BAY

Brisbane’s biggest charity

ride celebrates 20 years and

its biggest ever event McKINNON HOUSE

A new era of respite care in

an idyllic setting on the Gold

Coast

MSLIFE.

AUTUMN 2012

LOUISA ON A MISSION

How a young mum won’t let MS hold her back

LOUISA ON A MISSION


pg. 8 Nominate your

MS Hero

pg. 8 Working with

MS Workshops pg. 12 One man’s struggle

against the odds pg. 15 Living Positively

with MS

MS

AWARENESS

MONTH

THIS MAY

How you can

help spread

the word

about MS

this May

QUEENSLAND’S PREMIER MAGAZINE FOR PEOPLE LIVING WITH MS

“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.

Then without announcement,

I can be back as the resident

celebrity in hospital learning

to walk again.

I have managed this

condition through positive

thinking, meditation, pilates,

swimming, diet and an

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.

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

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

is an acceptance of whatever

cards are dealt to you in this

life. It is your choice on how you

are going to manage that hand.

I guess I look at life through

different eyes these days and

tend to live in the moment.

Just before Sophia’s fifth birthday

(she is 10 now), my Mum asked

her what her three birthday

wishes were. She stated that

she “would LOVE a violin, a

poodle puppy…but most of all Grandma I would

love a cure for MS and that Mummy’s legs would

work properly again”. She received the violin

and recently Millie the poochon puppy, and is still

waiting for the gift of a cure.

I am 41 now, lived with MS for over 12 years

and I am aware of the realities 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!”

LIFE Queensland

Sharon and Sophia Ball with

their puppy Millie

CEO’s Desk Brissie to the Bay

Introducing Facebook

Portrait of Posterity

5

Work of Aart

6

Lynette Walks Again

7

Events

8

An 11 year old’s idea... 9

MS Readathon

10

Ambassadors Needed 11

Notice of AGM

12

New Record for

brissie to the bay

3800 CYCLIST PEDAL FOR A CURE!

Multiple Sclerosis Society of Queensland ABN 56 731 473 412

286 Gladstone Road Dutton Park QLD 4102 Phone: 07 3840 0888 Fax: 07 3840 0813

Locked Bag 370 Coorparoo DC QLD 4151 Email: [email protected] www.msaustralia.org.au/qld

Jenni Ambassador, National Panel Horse Judge

and person with MS

QUEENSLANDGiving life back

MS CLINIC

CONVERSATIONS

In depth answers to the most

frequently asked MS questions

2 nd Annual MS National

Advocates Conference

Storming Parliament House for MS

MS Life


Spring 2010

CCSVI DEBATE

Why MS organisations are

proceeding with caution on

new treatments Kate finds her

dream job

GIVING LIFE BACK

The ambitious program

to provide integrated and

dignified care

FOR THE CAUSE

Meet the Queenslanders

supporting MS research and

regional services

PwMSQA new framework to expand

and strengthen the MS

support group network

LIFE

Giving life back

Questions

about MS?

Life at Annerley....

COMPLETED!

Giving back independence and dignity

We’ve got the answers

you’re looking for

QUEENSLANDus together!

BOB AND KAREN’S LOVE STORY

MS brought

Summer Edition 2009

MS Life


Spring 2011

BREAKTHROUGH

MS RESEARCH

Scientists have identified

the major common genetic

variants that contribute to

the cause of MS

MS gene

discovery

ORAL TREATMENT

JOINS PBSGilenya ® is the first oral

treatment for relapsing

remitting MS to become

available on the PBS TREVOR FARRELL:

GIVING LIFE BACK

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

Multiple Sclerosis Society of Queensland

286 Gladstone Road Dutton Park QLD 4102

Locked Bag 370 Coorparoo DC QLD 4151

ABN 56 731 473 412

Phone: 07 3840 0888

Fax: 07 3840 0813


www.msaustralia.org.au/qld

LIFEQUEENSLANDCEO’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

LIFE AT ANNERLEY...

MS SOCIETY OF QLD PURCHASES PARTIALLY

COMPLETED TOWN HOUSES AS PART OF LIFE OPTIONS

Summer edition2009

MS Life


Summer 2011

COMEBACK KID

Geoff Huegill lends his

support to MS, fresh from

taking gold in Delhi Lisa’s story of

motherhood and M

S

TABLET TALKA look at new oral treatments

for MS that offer more

options

LET’S CRUISEHelen Emery takes on

the high seas in style with

husband Graham

MOONLIGHT WALK

Over 1300 people take a stroll

through Brisbane to raise

money for MS

A YEAR OF

EMPLOYMENT

AND MSWHAT A YEAR IT

HAS BEEN FOR MS

WORLDWIDE

MCKINNON

HOUSE FOR RESPITE p.6 PREPARING

FOR THE SUMMER HEAT p.7

LEIZA’S STORYp.3

LIFEQUEENSLAND

Winter Edition 2009

Giving life back

Educate, Motivate

& Advocate

Our New MS

Ambassadors

Vitamin D

are you getting enough?

OUR PATRON

Her Excellency Ms Penelope Wensley AO

The First Official

World MS Day

MS Life


A GLOBAL MOVEMENT P3

How the world united with

a common goal: to raise

awareness of MS

Winter 2010

Debbie strives

despite MS

COOLING REBATE P5

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

MS Life


Winter 2011

EMPLOYMENT AND MS

See how Queensland

took part in World MS Day

celebrations this year Employm

ent Power

MS AWARENESS WEEK

Read about the lip smacking

campaign that had everyone

talking about MS

MS AND SESPwMS Josie Montano helps

during Queensland’s floods

and cyclones

VIRAL MS CAMPAIGN

Learn what Mayor of Ipswich

Paul Pisasale feels about

employment and MS

LIFE

QUEENSLANDAutumn Edition 2009

Giving life back

Lisa & Sandy tell...

“We Have MS,

But It Doesn’t Have Us!”

Services to

support you

& taking control




worldMSday


Autumn 2010


around the world!


Life at Annerley

The official launch


MS Life


Autumn 2011

WORLD MS DAY




GET PHYSICAL



with MS

BRISSIE TO THE BAY






Coast

MSLIFE.

AUTUMN 2012

LOUISA ON A MISSION


LOUISA ON A MISSION


pg. 8 Nominate your

MS Hero

pg. 8 Working with



with MS

MS

AWARENESS

MONTH

THIS MAY

How you can

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this May


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LIFE Queensland


their puppy Millie

LIFEQueensland

THIS ISSUE

CEO’s Desk

2

Brissie to the Bay

3


4


5

Work of Aart

6

Lynette Walks Again

7

Events

8

An 11 year old’s idea... 9

MS Readathon

10

Ambassadors Needed 11

Notice of AGM

12

Volume 3 Spring Edition, September 2008

New Record for

brissie to the bay


Multiple Sclerosis Society of Queensland ABN 56 731 473 412

286 Gladstone Road Dutton Park QLD 4102 Phone: 07 3840 0888 Fax: 07 3840 0813

Locked Bag 370 Coorparoo DC QLD 4151 Email: [email protected] www.msaustralia.org.au/qld

Jenni Ambassador, National Panel Horse Judge

and person with MS

LIFEQUEENSLAND

Spring Edition 2009

Giving life back

MS CLINIC

CONVERSATIONS






MS Life


Spring 2010

CCSVI DEBATE




dream job

GIVING LIFE BACK



dignified care

FOR THE CAUSE



regional services




LIFE

Giving life back

Questions

about MS?


COMPLETED!






MS brought

Summer Edition 2009

MS Life


Spring 2011

BREAKTHROUGH

MS RESEARCH




the cause of MS

MS gene

discovery

ORAL TREATMENT





GIVING LIFE BACK





MAYOR PAUL PISASALE








ABN 56 731 473 412

Phone: 07 3840 0888

Fax: 07 3840 0813



LIFEQUEENSLANDCEO’s Desk

2

Life Options

3

Ian’s Story

4

In Memory of John 5



Events

9


MS Book Reviews 12

LIFE AT ANNERLEY...



Summer edition2009

MS Life


Summer 2011

COMEBACK KID




motherhood and M

S



options



husband Graham

MOONLIGHT WALK



money for MS

A YEAR OF

EMPLOYMENT


HAS BEEN FOR MS

WORLDWIDE

MCKINNON



LEIZA’S STORYp.3

LIFEQUEENSLAND

Winter Edition 2009

Giving life back

Educate, Motivate

& Advocate

Our New MS

Ambassadors

Vitamin D


OUR PATRON


The First Official

World MS Day

MS Life





awareness of MS

Winter 2010

Debbie strives

despite MS

COOLING REBATE P5





P10








MS Life


Winter 2011

EMPLOYMENT AND MS

See how Queensland



ent Power

MS AWARENESS WEEK



talking about MS



and cyclones

VIRAL MS CAMPAIGN



employment and MS

LIFE


Giving life back




worldMSday


Autumn 2010


around the world!


Life at Annerley

The official launch


WORLD MS DAY




GET PHYSICAL



with MS

BRISSIE TO THE BAY






Coast

MSLIFE.

AUTUMN 2012

SION

et MS hold her back

SION

et MS hold her back

ing with

orkshops pg. 12 One man’s struggle


with MS

MS

AWAREMONTH

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ISSUE23


New Record for

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3800 CYCLIST PEDAL FOR A


286 Gladstone Road Dutton Park QLD

Locked Bag 370 Coorparoo DC QLD

Spring Edi

MS Life


Spring 2010

CCSVI DEBATE




dream job

GIVING LIFE BACK



dignified care

FOR THE CAUSE



regional services




LIFE

Giving life back

Questions

about MS?


COMPLETED!






MS brought

Summer Edition 2009

MS Life


Spring 2011

BREAKTHROUGH

MS RESEARCH




the cause of MS

MS gene

discovery

ORAL TREATMENT





GIVING LIFE BACK





MAYOR PAUL PISASALE








ABN 56 731 473 412

Phone: 07 3840 0888

Fax: 07 3840 0813



ANDCEO’s Desk

2

Life Options

3

Ian’s Story

4

In Memory of John 5



Events

9


MS Book Reviews 12

LIFE AT ANNERLEY...



Summer edition2009

MS Life


Summer 2011

COMEBACK KID




motherhood and M

S



options



husband Graham

MOONLIGHT WALK



money for MS

A YEAR OF

EMPLOYMENT


HAS BEEN FOR MS

WORLDWIDE

MCKINNON



LEIZA’S STORYp.3

LIFEQUEENSLAND

Winter Edition 2009

Giving life back

Educate, Motivate

& Advocate

Our New MS

Ambassadors

Vitamin D


OUR PATRON


The First Official

World MS Day

MS Life





awareness of MS

Winter 2010

Debbie strives

despite MS

COOLING REBATE P5





P10








MS Life


Winter 2011

EMPLOYMENT AND MS

See how Queensland



ent Power

MS AWARENESS WEEK



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employment and MS

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LIFEQueensland

THIS ISSUE

CEO’s Desk

2

Brissie to the Bay

3


4


5

Work of Aart

6

Lynette Walks Again

7

Events

8

An 11 year old’s idea.

MS Readathon

AmbassNoti


New Record for

brissie to the bay


Multiple Sclerosis Society of Queensland ABN 56 731 4

286 Gladstone Road Dutton Park QLD 4102 Phone: 07

Locked Bag 370 Coorparoo DC QLD 4151 Email: LIFEQUEENSLAND

Spring Edition 2009

Giving life back

MS CLINIC

CONVERSATIONS






SEueenslanders

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Summer Edition


TREVOR FARRELL:

GIVING LIFE BACK

We celebrate the

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LIFEQUEENSLCEO’s Desk

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Life Options

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Ian’s Story

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In Memory of John 5



Events

9


MS Book Reviews 12

LIFE AT ANNERLEY...



Summer edition2009

lends his

MS, fresh from

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options



husband Graham

MOONLIGHT WALK



money for MS

A YEAR OF

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HAS BEEN FOR MS

WORLDWIDE

Giving





awareness of MS

Debbie strives

despite MS

COOLING REBATE P5





P10








MS Life


Winter 2011

EMPLOYMENT AND MS

See how Queensland



ent Power

MS AWARENESS WEEK



talking about MS



and cyclones

VIRAL MS CAMPAIGN



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REGIONAL EMPLOYMENT fORUM – SUNSHINE cOAST

NDIS UPDATE

On December 5 last year, MS Queensland hosted the second MS Queensland Employment Roundtable at the Caloundra Council Administration Building to, once again, shine the light on the issues of employment for people living with MS and other chronic illnesses. It was held on the Sunshine Coast to bring a regional Queensland focus to the discussions.

Federal, State and Local Government were represented including the Sunshine Coast Mayor, Mark Jamieson, together with employment body representatives, key stakeholders and MS Queensland’s Lincoln Hopper, Karen Quaile, Natalie Walsh, MS Advocate John Trigger and MS Ambassador Kellie Carpenter. Valuable information on employment for people with a chronic illness was put to the group and key areas were identified for further action.

At the Roundtable MS Queensland CEO, Lincoln Hopper said, “MS Queensland is eager to break down the stigma of having MS so that employers are actively encouraged to consider keeping on or employing a person with MS. People with MS fall out of employment for a range of reasons and we wanted to have a focused discussion about what we could do to improve that situation.”

Issues that were discussed at the Roundtable included:• theimpactofMSandchronicillnessontheeconomy;• theeffectsofMSandchronicillnessonemployment

retention;• thebenefitsofretainingpeoplelivingwithMSandother

chronic illness in employment; • waystoachieveabetterunderstandingandawarenessof

MS and chronic illness amongst employers; and• earlyinterventionstrategiestokeeppeoplelivingwithMS

in the workforce.

Sunshine Coast Mayor, Mark Jamieson shared that a goal of the Sunshine Coast Council is “economic sustainability” where the employment of people with disability is encouraged.

With an impact to the economy of half a billion dollars in lost productivity each year, employment retention for people living with a disability is as much an economic issue as it is a social issue.

Please contact me with any queries you may have at [email protected] or phone 07 3840 0823.

Natalie, Advocacy Manager

STOP THE PRESS!NDIS (NOW TO BE KNOWN AS DISABILITYCARE AUSTRALIA) BILL PASSED

In March the NDIS or DisabilityCare Australia, as it will now be known, is a reality for all Australians with the Bill being passed through Parliment.

It has been made clear that people with degenerative conditions like multiple sclerosis – which are likely to requiresupportovertheageof65,iftheirconditionprogresses – may be able to enter the scheme through the earlyinterventioncriteriabeforetheyturn65.

The implementation of DisabilityCare Australia will provide the chance for true change in the lives of people living with disability, their families and carers. DisabilityCare Australia will ensure people with disability, wherever they live, receive care and support based on their needs, and have choice and control over this support.

Don’t forget you can play an important part in the DisabilityCare Australia development by contributing to NDIS Your Say at www.ndis.gov.au/talking-about-ndis/yoursay/

We encourage everyone to ensure their voice is heard during this critical development time of the scheme.

Whilst the final introduction of DisabilityCare Australia may seem some time away, it is vital that this new very complex system is given proper time and investment to ensure the best possible outcome is achieved and the varying needs of the disability community as a whole are identified and appropriately catered for throughout a person’s life.

Furtherworkhascommencedonthe73innovativeprojects within the Practical Design Fund that include supporting people with a disability to exercise choice and control; support for the growth and skilling of the disability workforce; and development of tools for people with a disability to make informed choices about who should deliver their support.

You can find more information by visiting www.ndis.gov.au/towards/projects/the-practical-design-fund/

Please do not hesitate to contact Natalie Walsh on 07 3840 0823 or email [email protected]

MS Queensland’s Young Ambassadors

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THE ROLE OF

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Ms

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TIM

Hi all

For this edition I have not had any questions put forward to answer so this may read as a bit more like ‘editorial comment’ than the more specific topics of the last few editions.

My colleagues will tell you that I am NOT a fan of social media – things like Facebook and Blogs and Twitter – but I do want to clarify that my concerns with them are often related to specific types of questions that may come through as opposed to the real social side and positives of these mediums.

Social media – essentially internet technologies that facilitate interaction between people – are changing how clinicians interact with patients and colleagues and how people with MS share information with each other. These are good things. Your access to information is better than it has ever been – important when so many decisions about your treatment and management options are offered back to you to decide which way you would like to go.

What most of you will know is that everyone with MS is different. Everyone has different symptoms at different times. There are many treatment options – some drugs, some therapy, some ‘alternative’. What works for one person many not work for the next. The horrible experience one person has with a medication or treatment may not be same for the next. I write this to simply remind and urge you to remember that you are all different.

The good side… you should be able to share your experiences and hear from others. A person with MS can offer information and support in a way that even the best neurologist, MS nurse or physiotherapist cannot. To be able to ask if this “is normal” and have others tell you yes and to hear again that in most cases there are options to improve things. To share how you went on a treatment/ with a program/ lifestyle change is great outlet and sense of “support” from others living with MS.

The bad side… you just never know who you are actually talking to and who they are also talking to! Sounds pretty obvious but it is an unfortunate fact that people without MS will pretend they do. The person responding to you may be selling or promoting something, they may simply be bored. They may live in a country that has completely different access to services and products than we do here in Australia.Myhopeisthat99.9%ofpeopleonthesesitesandblogsaregenuine…butsomearenot.

Many MS Societies are now on Facebook around the world. It is a great tool for us to get new information out, share events and activities and for those connected with us to talk to each other. What we cannot do is answer questions about the disease or the treatments / therapies via this medium. For all the reasons discussed above – we need to be able to answer the question that is specific to you with a response that is specific to you.

Please always know that you can call or email us directly as the more we know about YOU, the better we can work with you and give you information that is relevant to you.

Tim, Manager Specialist Education

Note: 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 [email protected] before 12 April 2013.

MS LIFE – AU

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BLADDER MANAGEMENT

fROM THE cHAIRPERSON Of pwMS SUPPORT GROUPS

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Bladder symptoms are very common in people living with MS, often from early in the disease process. Bowel difficulties are less common, though equally upsetting.

These symptoms can affect all aspects of life, and are often one of the reasons for leaving employment and reducing an active and social lifestyle. Other symptoms, such as fatigue, can be worsened by bladder symptoms such as frequency at night.

The UK MS Trust has recently updated their resources on Bladder and Bowel Management. These can be found in our general resources section.

Go to www.msqld.org.au/resources to download a copy or contact our InfoLine on 1800 177 591 for a version to be emailed or mailed to you.

The good news is, many of the symptoms can be effectively managed. Simple changes may be all that is needed to stay in employment, and

2013 – where did you come from? Another year is already a quarter of the way over as the great staff at MS Queensland continue to carry out their important work in providing support and services throughout Queensland.

Over the Christmas break I was thinking about MS Queensland’s 2020 Strategic Plan with refreshed vision, goals and strategies for making life better for people with MS.

The MS Queensland vision is ‘a world free from MS and its devastating impact’ by 2020. It is exciting to be a part of an organisation that has this clear vision to ultimately find a cure for MS and improve the lives of those, like me, living with MS.

On reading the Strategic Plan I noted particular objectives that we can all do to play our part in achieving this goal; I thought I would share with you:• consultwiththeMSQueenslandServices

team to help live independent and productive lives;

• supportMSQueensland’sactivitiesinyourarea; and

• continuetogrowawareness of MS.

I know the team at MS Queensland love meeting new members of our community, and of course reconnecting with current members in the work they carry out.

This year I would really encourage you to play your part with MS Queensland in any way that you can; from taking part in one of the MS Queensland events such as sharing your living positively with MS story; providing input into the design of the NDIS; or just coming together with friends on World MS Day and enjoy being a part of this important group of people and an organisation like MS Queensland.

I hope to be able to connect with more members and staff within MS Queensland this year. I look forward to meeting you!

jenni PwMS Support Groups Chairperson

WWW.MSQLD.ORG.AU

maintain an active and fulfilling lifestyle. Speak to your GP, or MS nurse. You may be referred to a specialist continence advisor, a urologist for bladder symptoms or a gastroenterologist for bowel issues.

A fact sheet on continence care can also be found on the MS Australia website.

MS Queensland can provide registered clients with a photo ID card. Many people living with MS find this useful when in public, to show they need the toilet urgently, or need to park close to the shops or public toilets.

For more information please email us at [email protected] or phone our InfoLine on 1800 177 591.

MS QUEENSLAND2020 STRATEGIC PLAN

our journey towards a world free from multiple sclerosis

MS1065_StrategicPlanA4Booklet_Art03_sd.indd 1 10/07/12 10:04 AM

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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.

23 junE

www.BrissietotheBay.com.au

MS Brissie to the Bay bike ride

26 junE – 3 juLy

www.MScycleDefrance. com.au

MS Cycle de France bike ride

15 – 30 aprIL

www.msqld.org.au

MS Heroes Awards judging period

Month oF May

www.KissGoodbyetoMS.org

MS Awareness Month

20 aprIL

www.MSswimathon.com.au

MS Swimathon Cairns

27 aprIL


MS Swimathon Townsville

29 May

30 MAY 2012

www.WorldMSDay.org

World MS Day: Year of Young People

for more information contact the MS Queensland Events Team on 07 3840 0828 or email [email protected]

25 May


MS Swimathon Rockhampton

18 May


MS Swimathon Sunshine Coast

18 oCtoBEr

www.moonlightwalk.com.au

MS Moonlight Walk

Month oF auGust

www.msreadathon.org.au

MS Readathon

Documents

MS Life Autumn 2013