MSLIFE. MS AUTUMN 2013
QUEENSLAND’S PREMIER MAGAZINE FOR PEOPLE LIVING WITH MS
taKInG FundraIsInG TO THE EXTREME Help us Kiss Goodbye to MS this May
BrEndan’s physIo journEy wIth Ms pg. 10
pg. 21
pg. 19
New after-hours program at Dutton Park Physio
What do you know about Ann Langley’s the NDIS? contribution to MS
LETTER fROM THE EDITOR
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 mslife@msqld.org.au MS LIFE – AUTUMN 2013
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Kindest regards
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 mslife@msqld.org.au before 12 April 2013.
CoMInG SOON nEw
WEBSITE 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 provide feedback, make a donation to MS Queensland or for more information please call 1800 287 367 email mslife@msqld.org.au 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.
ContEnts AUTUMN 2013
fROMthe CEo
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: • $690,000 funding has been awarded for MS research projects in Queensland for 2013; • 2013 MS Heroes nominations have now closed and are being judged, find out who the winners are on World MS Day, Wednesday 29 May. Check out www.msqld.org.au /get-involved/msheroes for more information; • in April and May MS Swimathons are happening in Townsville, Cairns, Sunshine Coast and for the very first time in Rockhampton! • starting in April, MS Queensland is offering after-hours Yoga and Feldenkrais classes to help people living with MS better manage fatigue; • to make sure the 23rd MS Brissie to the Bay bike ride is our 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 • this year World MS Day will be on Wednesday 29 May and 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,
cOVER STORY or an O’Connn Lucy & Brend
Brendan O’Connor walks through MS diagnosis
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
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.
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
MS LIFE – AUTUMN 2013
PAGE 18–19 Vale Ann Langley
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TAKING fUNDRAISING TO THE EXTREME –
KIss GoodByE to Ms! hELp us
HOW WILL YOU WEAR, DARE OR SHARE TO KISS GOODBYE TO MS IN MAY 2013? 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.
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!
Our aim is to raise awareness and, we hope, over $1 million from across Australia towards groundbreaking MS research and support services for people living with MS.
So the dare is there for you to take up. To anyone living with MS or with a connection to MS, why not puckerup 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;
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 more than $5,000 as a result!
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
MS LIFE – AUTUMN 2013
Already in the lead-up to World MS Day this year, Wednesday 29 May, 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!
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MS Queensland
Brisbane Auxiliary takes
austraLIa day ay
honour
OVER 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. 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. 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
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.
Just recently, the Brisbane Auxiliary donated $10,000 to MS Queensland 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!
Grants GIvE BaCK to thE Ms CoMMunIty MS LIFE – AUTUMN 2013
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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 Casino funding grant of $3,400 will provide vital education equipment to the Toowoomba region including the provision of wellness programs, fatigue management workshops and employment and MS workshops. The grant from the Gambling Fund of $18,600 will go towards improving the bathroom facilities 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.
LONG-STANDING
Ms M CEo awardEd oaM 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. “Since the early 1980’s Trevor’s vision, dedication and leadership have set the foundations for an ever-expanding MS Society in an often volatile not-for-profit environment.”
“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.
MS LIFE – AUTUMN 2013
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; introducing the ‘MS Clinic’ at the Royal Brisbane and Women’s Hospital in 1995; creating the ‘MS Brissie to 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.
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BrEndan’s physIo journEy wIth Ms 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. 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).
“As soon as I started the physiotherapy courses at MS Queensland I saw what was achievable.”
“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.”
The “strangeness” was Brendan’s realisation that he was gradually learning to stand and walk again.
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.
“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.”
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.
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 MS LIFE – AUTUMN 2013
“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.”
“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.”
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NEW AfTER-HOURS SERVIcE
PHYSIOTHERAPY AND EXERcISE THERAPY AT DUTTON PARK
BRISBANE NORTH AND PENINSULA PHYSIOTHERAPY cLINIcS
AQUATIc OPTIONS
Our 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 More than 2,880 people descended on South Bank for a 10km along the Brisbane River lightable of atofull and walk five weeks of Pilates – and weunder hopethe to be moon, to raise a total of $300,176 for MS. make this program available again at the end of the year. The money raised helps MS Queensland vital support The Aquatics program introduces manyfund people to a new services people living across the State. style offorexercise. It is a with ‘cool’MS exercise option in every sense of the word and allows a greater degree of freedom Our CEO, Lincoln Hopper said we last year’s of movement than exercising ‘on smashed land.’ Challenging fundraising goal of $180,000 three weeks before this year’s your balance and achieving a greater stretch as well as walk, which shows the incredible level of enthusiasm of all strengthening and flexibility can be so much more fun participants. in a pool environment! Just ask anyone who is currently participating in the program. The course took families, corporate teams, community groups and a number of people living with MS along the The Pilates conducted the Cliffs, mats across in the gym Brisbane River,program beneathisthe Kangarooon Point the area at the Dutton Park Clinic. Pilates is a great method Story Bridge, through the Botanic Gardens and back over to you better of Bank. different muscle groups. theteach Goodwill Bridgecontrol to South A Kimberley Simpson was a full-time Year 4 teacher up until number of families and work colleagues also took part 2011 when an MS relapse. Shein felt her future together, takingshe thehad opportunity to dress an array of weird and wonderful forunable the MStocause. was uncertaincostumes as she was hold her own head up on some days due to fatigue. To improve her well-being “The brilliant decided team of Star Wars Stormtroopers was definitely Kimberley to complete MS Queensland’s aftera crowd favourite this year and they completed the MS hours Pilates and Aquatics sessions and has since been Moonlight Walk intofull replica costume,” Hopper said. able to return part-time work. SheMr thinks herself very fortunate and is thankful for the wonderful help and service One of the top fundraisers was 35-year-old Nicole from thewho Physiotherapy staff atwith theMS Dutton Parkjust Clinic. Gallagher, was diagnosed last year years
MS LIFE – AUTUMN 2013
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after her own sister was diagnosed with MS. Ms Gallagher completed walk with her team, “The coursethewas fantastic! Madly Striving for a Cure for MS, Pilates gave me this incredible who together have raised almost core stability that I’ve never $10,000.
had before.”
“As my sister and I both have MSabsolutely we are madly “I lovedstriving the for a cure. The support positive environment! people have by The staff andshown everyone donating isinamazing and partaking the course the awareness of what MS were amazing, nothing was too is in the community has definitely grown hard yet the results were so rewarding.” since last year,” Nicole said.
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.
updatE cARMEL’S SELf-ADVOcAc cARMELS cARMEL’ SELf-ADVOcAcY A Y Ac jOURNEY WITH HER LOcAL MP
SELF ADVOCACY. AD THE R ROAD TO SUCCESS
CARMEL’S MEMBER
Dear Nicole
Carmel
RE: WATER
Cock
Further to conversation
IF YOU Y from your o LIVE WITH MS, YOU SHOULD NOT UNDERESTIMA you on beha IMPA IMPACT PA PA ACT CT SEL SELF-ADVOCACY TE THE CAN HAVE ON YOUR and using th SELF-CONFIDENCE, WELL-BEING, AND PRIDE. Street to acc Doctors Surg Here’s Here r ’s how a lady living re proximity. A with MS like to inform walk from the corner worked k with her local member ked of Ipswich Road for all living in to Bower Street and Brisbane City Council afterwards come and achieved a with the atro back to our Inclusive positive outcome. outco Living centre at footpath we number 33,” she said. to get out in Carmel Cock was diagnosed would like to with Within three days of describe it to primary progressive progr sending the letter, MS in 1998 and Carmel had a reply • It is laid w over the years has experienced from the Member what (being a for Tennyson Nicole gradual loss of mobility Johnstone who would say i in her arms and assured her that the legs. She now lives in footpath rubber strip our Annerley be fixed as soon as possible. would Apartments and lifted causin an remains engaged This was a very positive, with at least two her local community, timely outcome communi taking regular occurs all th for Carmel and the residents outings to meet mee friends and family. at our street. accommodation facility at Annerley, • There are nu and just one of many R Recentl Recently, y, while trying to manoeuvre that • The concrete with MS have achieved people living her mobility scooter through future constr along the advocating in their community. self‘atrocious’ footpath • The path in on Waterton Street in Annerley, is slanted tow Annerle wheelchair Like Carmel you too giving the dr Carmel Cock was continuouslybound can bring about change in your community. the feeling th losing Her going to tip o message to others in a similar position • The ramps t is to, “be positive and o do what you take the matter up roads are too feel is right.” caused panic w Council, urging them being afraid of footpath. Writing a For more information across the roa on a simple task, but advocate, please contact how to selfcomes in any our Advocacy mously challenging. Manager Natalie Walsh • The drivewa ys on 07 3840 0823 hours to type the steep and some or natalie.walsh@m sqld.org.au time) to her local minimum of th from the road. in control and system. As you writing to you living and using ccess shops and proximity. At this point, re in close to inform you that we I would like are all living in WHEELCHAIRS and atrocious condition of with the 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
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
have read in need of repair. seem like minor p but they are a ma people with a disa carers.
I would like to inv some staff member myself to walk from of Ipswich Road to and afterwards com inclusive living cent 33.
Hoping to hear from Sincerely, Carmel Cock
AfTER-HOURS
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 16 April to 4 June from 5:30pm – 6:30pm. For people living with MS, yoga has 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 WilsonMarks 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.
S LETTER TO HER LOCAL – 22ND JULY 2012
So why not come along and have a laugh while getting some worthwhile exercise! Spaces are limited so make sure you book early.
e
RTON ST. ANNERLEY
a telephone n with a staff member office, I am writing to alf of residents living he above mentioned cess shops and geries that are in close At this point, I would m you that we are WHEELCHAIRS and ocious condition of the are finding it difficult n the community. o take some time I to you. with concrete w ith g a layperson) I is separated by ps. The concrete has ng a major rise of o centimetres. This he way along the
umerous pot h oles. e is broken ou tside a ruction site. a number of p lac wards the road, es river and carers hat their chairs are over. enable us to cr oss steep – this has with the driver f not getting ad before traffic direction. are also to e are raised a hree centimetres
MS LIFE – SUMMER
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MS LIFE – AUTUMN 2013
m you soon.
2013
d this footpath is These may only problems to most ajor worry for ability and their
vite you and rs to accompany m the corner Bower Street me back to our tre at number
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150draws lottery
froM <ThiS To ThiS >
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-Benz C63 AMG, but will also offer our MS Autobuy 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
MS LIFE – AUTUMN 2013
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.
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HOW OW V VIKKI IKKI LIVES
posItIvELy wIth Ms WRITTEN BY VIKKI HURST
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: “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.”
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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 is valuable, worth $1, and precious. 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, might total 100 later on. Like $100 in 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
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: • surround yourself with positive people; • be thankful for where you’re at; and • the glass is always half full.
MS DANcE HALL cOMMITTEE TOOWOOMBA SUPPORTS MS 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 Toowoomba, totalling more than $250,000. Committee The original dance hall structure was owned by MS Queensland in the 70’s, until it was set to be The knocked down. Instead, the hall was transferred to the Toowoomba University campus where today, committee members meet every Saturday night from 8.00pm–12.00am. Each Saturday night is filled 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 timehonoured community fundraising efforts.
Ms hEroEs
AWARDS ARE BAcK fOR 2013! 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. This year World MS Day will be on Wednesday 29 May and will 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 the winners are on World MS Day, Wednesday 29 May. 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 MS LIFE – AUTUMN 2013
3. Employer of the Year 4. Volunteer of the Year 5. Carer of the Year
15 Pictured: Our 2012 MS Inspiration Award Highly Commended recipient, Jack Brook with his mum Regina.
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! 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
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 a remarkable $2.1 million towards the fight against MS. This year we are aiming to create the largest impact yet by raising $1.2 million dollars in our quest for a world free from MS. 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
MS cYcLE DE fRANcE 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 the French Alps and raise $80,000 for MS Queensland.
MS LIFE – AUTUMN 2013
16
On Wednesday 26 June the MS Cycle de France riders will embark 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 witnessing the 4th stage of the Tour de France cycle along the streets 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 amount of $5,000 dollars each to fund vital physiotherapy services for thousands of Queenslanders living with MS.
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 saw a total of 2,882 walkers turn out to 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.
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 Saturday 20 April and in Townsville on Saturday 27 April. 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.
H HELP US ‘KISS GOODBYE TO MS!’ 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
MS LIFE – AUTUMN 2013
UPcOMING MS SWIMATHONS
17
VALE
ann LanGLEy
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.
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.
the Brisbane Housing Company and a President of the Logan Local Ambulance Committee. In 1997 Ann was named Logan Citizen 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 service to the Society) and the 2007 James D. Wolfensohn Award for International Person with MS.
ann’s Ms story
MS LIFE – AUTUMN 2013
Amongst other things, Ann served on the MS Queensland Board, was joint instigator Like so many people with MS, Ann’s early symptoms went unrecognised for many of the Logan pwMS years. Ann’s six children were aged between five and fifteen when her husband died Support Group, Chair of cancer in 1972. Despite her increasing MS symptoms, Ann returned to work full-time of PwMS Queensland, as a musician and music teacher after her husband’s death. President of pwMS Australia and Editor-inAnn was 54 when she was finally diagnosed in 1988. This occurred when MRIs became Chief of the national available in Queensland. Two years after the diagnosis, she retired from teaching. While music MS Life magazine. was her passion, her practical nature accepted that her MS had put an end to her professional Ann also made a music career. significant contribution through many The challenges of those hard times fostered Ann’s fierce independence and her intense focus other community on ‘ability’ rather than ‘disability’. In her later years Ann walked with the aid of a stick, but her organisations including primary MS symptoms, like those of many people with MS, were not visible. being the Founding Ann’s passion, tenacity and courageous spirit are the hallmarks of her leadership and a defining Chair of Transit Care, 19 a Board member of part of the wonderful legacy she will leave with us and the many lives she has touched.
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So if you value the publications and services MS Queensland provides then please show your support by joining 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’d welcome your contribution to our vital work.
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SHARE YOUR STORY 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 common age of diagnosis of MS is between 20 and 40 when career and life common commitments 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.
advoCaCy
WITH NATALIE
MS ‘YEAR Of YOUNG PEOPLE’ –
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 natalie.walsh@msqld.org.au by Sunday 14 April.
NDIS UPDATE
REGIONAL EMPLOYMENT fORUM – SUNSHINE cOAST
STOP THE PRESS!
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.
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 require support over the age of 65, if their condition progresses – may be able to enter the scheme through the early intervention criteria before they turn 65. 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. Further work has commenced on the 73 innovative projects 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/
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: • the impact of MS and chronic illness on the economy; • the effects of MS and chronic illness on employment retention; • the benefits of retaining people living with MS and other chronic illness in employment; • ways to achieve a better understanding and awareness of MS and chronic illness amongst employers; and • early intervention strategies to keep people living with MS 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 natalie.walsh@msqld.org.au or phone 07 3840 0823.
MS LIFE – AUTUMN 2013
NDIS (NOW TO BE KNOWN AS DISABILITYCARE AUSTRALIA) BILL PASSED
Natalie, Advocacy Manager
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Please do not hesitate to contact Natalie Walsh on 07 3840 0823 or email natalie.walsh@msqld.org.au
Ms
quEstIons WITH TIM
THE ROLE OF
IN MS (CARE) 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. My hope is that 99.9% of people on these sites and blogs are genuine… but some are not. 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.
MS LIFE – AUTUMN 2013
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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 mslife@msqld.org.au before 12 April 2013.
BLADDER MANAGEMENT B 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
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 info@msqld.org.au or phone our InfoLine on 1800 177 591. MS QUEENSLAND 2020 STRATEGIC PLAN
our journey towards a world free from multiple sclerosis
fROM THE cHAIRPERSON Of pwMS SUPPORT GROUPS 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: • consult with the MS Queensland Services team to help live independent and productive lives; • support MS Queensland’s activities in your area; and
• continue to grow awareness of MS. MS1065_StrategicPlanA4Booklet_Art03_sd.indd 1
10/07/12 10:04 AM
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
MS LIFE – AUTUMN 2013
Ms Ms rEsourCEs pEopLE WITH
WWW.MSQLD.ORG.AU
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15 – 30 aprIL
20 aprIL
27 aprIL
18 May
MS Heroes Awards judging period
MS Swimathon Cairns
MS Swimathon Townsville
MS Swimathon Sunshine Coast
www.msqld.org.au
www.MSswimathon.com.au
www.MSswimathon.com.au
www.MSswimathon.com.au
29 May
Month oF May
25 May
23 junE
World MS Day: Year of Young People
MS Awareness Month
MS Swimathon Rockhampton
MS Brissie to the Bay bike ride
www.WorldMSDay.org
www.KissGoodbyetoMS.org
www.MSswimathon.com.au
www.BrissietotheBay.com.au
26 junE – 3 juLy
Month oF auGust
18 oCtoBEr
MS Readathon
MS Moonlight Walk
www.msreadathon.org.au
www.moonlightwalk.com.au
30 MAY 2012
MS Cycle de France bike ride
www.MScycleDefrance. 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.