MS Life Winter 2013

MSLIFE. WINTER 2013

QUEENSLAND’S PREMIER MAGAZINE FOR PEOPLE LIVING WITH MS

MANOLI’s OUtLOOK ON LIFE

HOW WE CELEBRAtED Ms AWARENEss MONtH Thousands of Queenslanders helped ‘Kiss Goodbye to MS’ pg. 08

pg. 04

pg. 12

2013 MS Heroes announced

Exercising in winter

Hundreds of Queenslanders dive in for MS

LETTER fROM THE EDITOR

LETTERS TO OUR MANAGER Of SPEcIALIST EDUcATION, TIM Dear readers, Where did the first half of this year go! Things have been very busy here at MS Queensland as we move out of MS Awareness Month and World MS Day, see the passing of five of our MS Swimathons, more than 140 Big Dinner Parties for the year, as well as the 23rd annual Brissie to the Bay bike ride!

We had a massive MS Awareness Month this year, with twelve buildings and bridges across Queensland lighting up red in support of MS! Have a look on page 6 to check out some photos. Once again, we held a Governor’s Reception at Government House on World MS Day to celebrate the MS Heroes for 2013.

Recently, I had the pleasure of visiting the pwMS Gold Coast Support Group as a guest speaker to talk about the many ways we, here at MS Queensland, communicate to our clients and members – this included introducing our great new website www.msqld.org.au that is now up and running (see page 11). Of course this publication, MS Life, is central to our communication with you but we also offer a monthly e-newsletter MS Insight, research and advocacy updates, social media avenues such as Facebook and Twitter, and our videos on YouTube.

Finally, this year’s Annual General Meeting (AGM) date has been set for Friday 8 November and everyone is invited to attend. But spaces are limited so make sure you register your interest by contacting us on admin@msqld.org.au As always, if you have any feedback about this edition of MS Life please don’t hesitate to get in touch by emailing me at mslife@msqld.org.au

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 29 July 2013.

VIsIt US!

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

MS LIFE – WINTER 2013

Kindest regards cassie, Editor, MS Life

2

Acknowledgement: We wish to thank Manoli Archontoulis for the use of his image on the cover of this publication. Photo by Ryan Smyth Photography.

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

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Exercising in winter Tim’s fundraising voyage Running program for MS Michael’s physio journey PAGE 6–7

How Queensland helped ‘Kiss Goodbye to MS’ PAGE 8–9

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Membership with us, which is just $33 a year, assists us in providing information and education about MS and leading MS research. To become a member or renew your membership for the 2013/14 financial year, simply complete the membership slip and return it to MS Queensland as soon as possible. On behalf of all Queenslanders living with MS, we look forward to your help in creating a future free from MS and its devastating impact.

Lincoln, CEO

MEMBERsHIP

Best wishes,

Calendar of events

PAGE 20

Just like them, MS Queensland is also wading out into the deep – and sink or swim, we won’t stop striving for people living with MS until we reach the other side.

PAGE 16–17 Advocacy with Natalie MS Entertainment Books on sale

PAGE 18–19 MS questions with Tim MS resources pwMS Support Groups update

Is this an impossible task? Not when I look at the example of all our amazing MS Swimathon participants, who showed us what it’s like to put everything on-the-line with courage and determination, even when they weren’t completely sure they would make it.

PAGE 10–11 Mayor Paul Pisasale raises awareness The new MS website is here!

More MS stories revealed

PAGE 12–13 Events that help people living with MS

PAGE 14–15 Manoli’s outlook on life

MS Queensland’s vision is a “world free from MS and its devastating impact.” Clearly, our picture of the future can’t and won’t ever become reality if we just stand and stare at the problem. Our vision will come true, but only when we completely commit ourselves to supporting the efforts of our MS researchers, get behind the brilliant staff and volunteers working one-on-one with people living with MS, and collectively be a strong voice for change in the community.

Letter from the Editor From the CEO

It inspires me that despite the huge challenges of undertaking an endurance swimming event, every person who participated in an MS Swimathon made the personal decision to not sit idly on the sidelines, but to get passionately involved. This reminds me of the words of Laurence J. Peter, when he said: “You can’t cross the sea merely by standing and staring at the water.”

PAGE 2–3 Over the last few months, MS Queensland has held five of our MS Swimathon fundraising events. These 12-hour events encourage people from all walks of life to swim as many laps of a pool as they can in order to raise vital funds for people living with MS (check out some of the action on page 12).

Manoli’s outlook on life Pages 14–15 hontoulis Manoli Arc

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MS LIFE – WINTER 2013

CONtENts WINTER 2013

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EXERCIsING IN WINtER Exercising in winter is often found to be more difficult due to our natural inclination to hibernate indoors during the darker, cooler months. Many people with MS however, find exercising in the heat very difficult and enjoy the opportunity to move about in cooler temperatures.

Regular exercise is also one of the best ways to boost your immune system and fend off wintertime colds and other illnesses. Here are a few important tips to make the most of your winter-time exercise. > Warm-up is important at any time, but particularly so during the colder months, as the body’s temperature is generally a little lower and the joints take a little bit longer to warm up properly. > Stretching is especially important in the winter months when it is easier to cramp – this will be particularly important for people whose spasticity appears to worsen in the cooler months. > Drink plenty of water. It is just as easy to become dehydrated during the cooler months as it is in the scorching summer heat, so carry a water bottle with you and drink plenty of fluids after your workout. Most people forget the importance of water during the colder months.

as soon as possible and put on a jacket and tracksuit pants to avoid getting a chill. > Remember, while you are exercising your body will generate heat, no matter what time of the year. If this heat cannot dissipate because of warm winter clothing, then you may experience heat related symptoms including fatigue.

There are some people with MS who find that the cold however does increase spasticity, increase sensory symptoms or have joints that ache in the cold. Some people feel more fatigued in winter, perhaps due to coping with the following symptoms. For those that find the cold difficult to move in: • try a warm drink to warm you up from the inside of your body; • try to exercise in the warmer parts of the day; and • try to manage a home exercise program that keeps you inside e.g. using the stairs, dancing, using the Wii Fit, doing ‘a winter’ clean of the house or seated exercises for your legs or arms.

Note: Please check with your doctor if you are beginning exercise for the first time, and your Physiotherapist to guide you with the best exercises for you.

> Whenever exercise is stopped or paused for any time period longer than a couple of minutes, take off any wet clothes

TIM’S fUNDRAISING VOYAGE

Rhonda Spiteri, who lives with MS, is incredibly proud of son her Tim who earlier in the year became the first Australian to complete the 5,000km eight-man journey that took 35 days to row from Gran Canaria to Barbados.

The 35-year-old, who is aiming to raise $250,000 for MS Australia, was quick to pay tribute to mum Rhonda, who was diagnosed with MS in her late teens.

MS LIFE – WINTER 2013

4

Tim said the backing he received on social media from people living with MS during the gruelling voyage helped lift his spirits.

“Reading those words of support from people living with the condition was something pretty important. These helped me get through the tough times on the open ocean.”

And he will be taking part in a second epic journey, this time a world first attempt to row more than 8,000kms from Western Australia to the east coast of South Africa – non-stop and without support.

To learn more or to donate to Tim’s cause visit his website at timsvoyage.com or his Facebook page at www.facebook.com/timsvoyage

MIcHAEL’S PHYSIO JOURNEY Experiencing MS Queensland’s running program was a huge benefit to Michael Codyre after his MS diagnosis in mid-2012.

The 40-year-old was in shock when he was told he had MS, but thanks to the physiotherapy running program he has made MS part of his life.

Michael’s vision and balance were impaired, he had pins and needles in his feet and flu like symptoms, but since connecting with MS Queensland his outlook has become much more positive.

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The running program run by MS Queensland’s Dutton Park Physiotherapy department was initially started as a higher level mobility group. Its curriculum is based on the research of Dr. Gavin Williams – a physiotherapist who has experience with running programs for people with traumatic brain injury.

The exercises practiced throughout the program include balance activities, lower limb strengthening and pre-running exercises. A lot of emphasis is placed on strengthening the calf and hip flexor muscles which are important for running.

Once participants have mastered these activities, focus is then placed on the running activities.

Physiotherapists specialise in working with people to walk well and with stair mobility. Running is then the next big step in functioning which is often overlooked.

Michael strongly believes that incorporating exercise into your daily routine is a great way to be ‘MS fit,’ and the running and exercise program developed for him is paying dividends.

“I have improved my coordination and general fitness by going to physio on a regular basis. My balance has had a massive improvement and I have experienced cognitive improvement as well.”

Michael has also seen a change in his outlook on life with MS, saying: “attending physio, it really helped to be in such a positive environment.”

“It has improved my mindset. Working in a group environment and not just one-on-one in a personal environment makes the whole process a lot easier.”

“I now live with my MS, not suffer from MS.” “I have met some great and positive people through MS Queensland who are also living with MS and who provide words of encouragement. For those who are newly diagnosed, make MS part of your life, don’t let it be your life.”

If you are interested in joining the running group program, please pass your expressions of interest to Senior Physiotherapist Stephen Ryder at stephen.ryder@msqld.org.au or call 07 3840 0841.

MS LIFE – WINTER 2013

RUNNING

“I wanted to be proactive and deal with my MS and learn how to improve my quality of life. So I began physio at MS Queensland to work on the physical and cognitive issues I’d been having.”

Often, younger people need to the ability to run for daily functioning such as running to catch the bus, running after young children, or running across the road. Running offers people living with MS a good fitness option as well as assisting the return to a sporting activity.

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MS AWARENESS MONTH SPECIAL

HELPED KIss GOODByE tO Ms! HOW QUEENSLAND

How we celebrated MS Awareness Month this year A total of twelve iconic buildings and bridges across Queensland proudly turned red for MS to help raise awareness during MS Awareness Month.

Our sincerest thanks to the following supporters who illuminated their exteriors during the month of May to help us shed light on MS: • King George Square, Brisbane • Conrad Treasury Casino, Brisbane • Kurilpa Bridge, Brisbane • QPAC, Brisbane • Sir Leo Hielscher Bridges, Brisbane • The University of Queensland (St Lucia), Brisbane • Wintergarden, Brisbane • Brisbane Convention and Exhibition Centre, Brisbane • Queensland Museum, Brisbane • SkyPoint Observation Deck, Gold Coast • Toowoomba City Hall, Toowoomba • Paronella Park, Cairns

MS LIFE – WINTER 2013

Throughout May thousands of Queenslanders also puckered up with red lipstick as part of the national Kiss Goodbye to MS campaign. However it wasn’t only the

females who took part, there were a few males who proudly wore red lipstick to help spread the word about MS. ‘Kiss Goodbye to MS’ is an initiative that came about in 2010 and has been growing momentum particularly over the last two years during MS Awareness Month in May. This year it was inspiring to see so many wonderful people taking part; from selling merchandise, to hosting events and organising morning teas, dying their hair red and sizzling sausages. A huge THANK YOU to everyone for spreading the word and talking about MS. In the MS Queensland office we held our own Kiss Goodbye to MS morning tea where everyone dressed in red, wore red lipstick, and brought a plate of red food. We even dared our male staff to wear red lipstick and let’s just say there wasn’t a lot of protesting going on. The food was delicious with rhubarb desserts, divine red velvet cupcakes, red jellies, pomegranates, and enough cheerios to feed an army.

Our lovely MS Ambassador Eleanor Rigden was out and about attending events, sharing her own personal journey with MS, organising fundraising BBQ’s with friends and not to mention hosted her own public MS Matters event, all in the spirit of raising awareness.

6 Wintergarden, Brisbane

UQ, St Lucia

City Hall, Toowoomba

Sir Leo

KISS GOODBYE TO MS – MAY 2013

‘KISS GOODBYE TO MS’ VISIT www.KissGoodbyeToMS.org Once again the Medland Dental Team got behind the campaign as MS is very close to their hearts. Kelly, their beloved dental assistant has been living with MS for six years. To help support Kelly and the cause, staff wore ‘Kiss Goodbye to MS’ t-shirts, donated $1 from each patient and sold raffle tickets throughout the month.

Maxi taxi ‘kissi

ng goodbye to

MS’

Michael Cannon was handing out hugs and kisses for gold coin donations at shopping malls with his daughter and grandsons. Ann and Bruce Walker dyed their hair red, with Bruce showing a ‘new hair style’ by dying red lips on the back of his head.

For those of you who live on the Gold Coast, there is a fabulous ‘Kiss Goodbye to MS’ maxi taxi driving around on duty. A huge thanks to Kathy and Chris Jaffray for instigating this; the taxi looks great and makes us feel proud when people mention they have seen it out and about.

If you want to read more about MS Awareness Month and how we can all help ‘Kiss Goodbye to MS’ visit www.KissGoodbyeToMS.org

o Hielscher Bridges, Brisbane

MS LIFE – WINTER 2013

Thank you again to everyone who took part this year, it is wonderful to see MS on the lips of Queenslanders! All funds raised during MS Awareness Month will contribute to vital services in Queensland and support ground-breaking research projects in Australia.

7 Treasury Casino, Brisbane

MS AWARENESS MONTH SPECIAL

Ms HERO CAtEGORIEs YOUNG PErSON OF THE YEAR This award is given to the person who is young (any age up to 40) or simply young at heart and living positively with MS.

ADVOCATE AND AMBASSADOR OF THE YEAR This award is given to the person who has been an outstanding champion of the MS cause, whether through contacting a Government representative or showing support for the wider MS community in Queensland.

EMPLOYER OF THE YEAR This award is given to the person who has been an outstanding champion by enabling and supporting an employee who is living with MS.

VOLUNTEEr Of THE YEAr This award is given to the person who has demonstrated outstanding volunteer services and contributed to the MS community.

CARER OF THE YEAR This award is given to the person who has shown outstanding selflessness to care and support for a person living with MS.

Ms

HEROEs ANNOUNcED It gives us great pleasure to announce this year’s MS Heroes...

In 2011 the MS Heroes awards program was launched to acknowledge and celebrate the contributions of Queenslanders who are ‘heroes’ to the multiple sclerosis cause.

In this its third year, there were five new categories developed to recognise those individuals who are heroes to the MS cause in their own respective ways.

When we launched this year’s program our CEO Lincoln Hopper said, “we wanted to find those individuals who have helped with the many challenges that people with MS face on a daily basis.

These people are advocates for the changes that help the 23,000 Australians with MS live fulfilling lives.”

This year, we received an outstanding number of nominations and the judging panel found it very difficult to choose only five winning recipients.

The winners of this year’s awards were acknowledged and celebrated at a reception held on World MS Day hosted by Her Excellency, the Governor of Queensland and MS Queensland Patron, Penelope Wensley AC. The evening also commemorated World MS Day and this year’s international theme ‘Year of the Young Person.’

MS LIFE – WINTER 2013

8 This year’s MS Heroes with Her Excellency, the Governor of Queensland and MS Queensland Patron, Penelope Wensley AC and our CEO Lincoln Hopper

MS HEROES – MAY 2013

WORLD MS DAY cELEBRATED WITH MOTTOS The reality is more than 2.5 million people are living with MS globally. MS is one of the most common neurological conditions amongst young adults in the northern hemisphere.

World MS Day was launched four years ago by the MS International Federation (MSIF), and is held every year on the last Wednesday in May to raise awareness about MS and to strengthen the network of people living with MS across the world.

The global campaign ‘What’s your motto?’ saw more than 4,200 people with MS from across the world share their life ‘mottos’ online. The World MS Day website www.worldmsday.org had more than 51,000 visitors to the site during May. You can read more about World MS Day events from around the world or share your own motto at mymotto.worldmsday.org

MS Young Person of the Year

HANNAH BOAG

Hannah is just 15 years old. She faced her diagnosis of MS at such young age with a stoicism and maturity far beyond her years. Having excelled as a young golf sportswoman and participated in the Queensland Junior Masters, the judges were impressed with Hannah’s ongoing positive attitude towards living life.

MS Advocate of the Year

JUDY JAMES

Judy received four nominations from four different people. It’s obvious her local community believe in her and the tireless and relentless work she has achieved. Judy’s advocacy work included successfully lobbying to have Betaferon added to the Pharmaceutical Benefits Scheme and petitioning for re-access to the local pool for people living with MS. She inspires others with her ‘never give up’ attitude, and has achieved local, national and international influence. Judy has actively played a role in her local MS Support Group for a number of years, and is a powerful force for the MS cause.

MS Employer of the Year

YWONNE SPENCEr, SUNSUPEr This year’s winning nomination recognised a leader within the large commercial corporation, Sunsuper who has shown compassion for an individual staff member with MS. Working in a leadership role, Ywonne worked with management to set standards and precedents for future employees living with chronic conditions, ultimately

allowing them to remain in the workplace for longer.

Ywonne portrayed the ability to go above and beyond the duties of a team supervisor, and deserves to be recognised as this year’s Employer of the Year.

MS Volunteer of the Year

IAN BREWSTER

There were a record number of volunteer nominations received this year, making it extremely difficult to choose a winner. As a result, two nominees were awarded ‘Highly Recommended,’ aside from the winner. This year’s winner, Ian, has proven to be so valuable to MS Queensland that the nominator said they “almost feel without a staff member when he’s absent.” Ian is humble, caring and does not seek out recognition for his work.

MS carer of the Year

GEOFFREY CORNWELL Similarly to Volunteer of the Year, there were three nominees awarded ‘Highly Commended’ in the carer’s category, aside from the winner. This year’s winner, Geoffrey, portrayed a high level of commitment and has selflessly cared for his partner for a number of years in the face of many developing challenges.

To read the full nominations for the five recipients, visit our website www.msqld.org.au If you would like more information on our MS Heroes 2014 program, please contact our awards team via email awards@msqld.org.au or call 07 3840 0825.

MS LIFE – WINTER 2013

Once again our congratulations go to this year’s MS Heroes:

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MS AWARENESS MONTH SPECIAL

MAYOR PAUL PISASALE RAISES

AWARENESS THROUGH

LIVING POsItIVELy To celebrate MS Awareness Month, our MS Ambassador the amazing Mayor Paul Pisasale once again invited members of the MS community to share their stories of how they live positively with MS. Both Mayor Pisasale and MS Queensland were impressed with the increase in stories received and the willingness of people to share their life living with MS. Those who sent their story were lucky enough to join Mayor Pisasale for afternoon tea as honoured guests at Brookwater Golf Course during MS Awareness Month. Their stories of courage, determination and inspiration were shared and many new friendships formed.

This year one lucky young lady and her husband, Emily and James Foster, were chosen to share lunch with Mayor Pisasale and MS Queensland’s Advocacy Manager, Natalie Walsh. Emily wrote about her life with MS from diagnosis at a young age to now and reflected the truly positive nature that she lives her life by. We’d like to share her story (below) with you.

EMILY’S STORY “My journey with MS began when I was only 12 and I couldn’t pick my feet up properly as we walked along the beach; my mum, naturally, thought I was making the whole thing up. It was from that point on I went through doctors appointment after doctors appointment until finally, when I was 17 and had lost my vision, that an ophthalmologist asked me a few questions and theorised it was MS and sent me to a neurologist.

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My journey began there, a first year education student getting the news of a lifetime: you have MS. I was just 17 at the time so being put in a neurology ward to be treated seemed very daunting. This was followed by many ups and downs, as I lost friends who didn’t know what to say but found people I hadn’t even noticed were there. Soon after all of this happened I met the love of my life who has helped

me through spells of not being able to see, walk, breathe and the list goes on.

Soon after diagnosis I went on to swap and switch between university degrees as the MS became very active. It would take two hands to name all the things I have tried. But this year I will transfer into an arts degree that will take a few of the subjects already studied and let me study externally. It will work around my monthly hospital visits and work so I can later do what I have always wanted to do – a Diploma of Education.

In meeting the love of my life I have been blessed with an amazing family, all of whom support and care for me, taking me to hospital appointments and comforting me when the MS gets too much to handle or I am having a relapse. I have taken a new outlook on life and am trying a lot of things to help control my MS: I am getting

fit and taking classes at my local gym, working on balance and other abilities I have lost over the last 7 years, eating a healthy diet and have switched medications, and I won’t forget about all the visualisation and positive thinking I am trying.

Multiple sclerosis has been a journey for me but it has made me the strong and determined person I am today, I will keep working hard against this disease and with the amazing support of my best friends, my husband and amazing family members I will keep fighting against it and will one day win.”

To read other stories of people who live positively with MS, visit our website www.msqld.org.au

Ms

THE NEW

WEBsItE E

IS HERE! WWW.MSQLD.ORG.AU

Our website has many new features including: • a vibrant homepage which offers important information on MS to those newly diagnosed and our supporters; • a comprehensive list of our information and education events around Queensland; • details on wellness and therapy options for those living with MS in regional Queensland; • a range of options to get involved with the work we do – from fundraising to volunteering; and • an online resource centre offering downloadable information on MS as well as back issues of MS Life and our award-winning annual reports.

We would love you to take some time to look through the website – feel free to log on today at www.msqld.org.au and have a browse!

We’d also encourage you to share the new website far and wide with your friends, family and work colleagues so they are equipped with the latest information on MS and the wide range of services we offer at MS Queensland.

As always, we’d appreciate your feedback. If you have any suggestions or comments on the new website and how we can make it even better for the MS community, please email your feedback to mslife@msqld.org.au Happy browsing!

MORE MS STORIES REVEALED At MS Queensland we aim to be the first-choice for MS information, education, treatment, care and support across Queensland. We exist to help people with MS get the best out of life, advocate for change and ultimately, search for an MS cure.

In 2011 we began a series of short films called ‘MS Stories.’

The films are designed to educate the public on how different people with MS manage their condition – through both their highs and their lows.

This is the third year we’ve been able to produce these films and, with the assistance of renowned film director Peter Ireland, we have released this year’s collection.

The films feature four Queenslander’s with MS in very different circumstances, all who have access to a different service we provide. In the videos you’ll meet Debbie who used our counselling service, Brendan who regularly uses our physiotherapy services, Carmel who lives in our Annerley Apartments high-care accommodation and Regina who heavily relied upon our InfoLine and website resources when she was first diagnosed with MS. We’d like to personally thank Debbie, Brendan, Carmel and Regina and their families for allowing us into your homes to learn about how you manage with MS. To view these amazing videos visit our YouTube channel www.youtube.com/user/MSAustraliaQ

MS LIFE – WINTER 2013

In a fast-paced technological world it is almost certain that company websites will need a ‘facelift’ every few years to keep up with the times. To ensure MS Queensland is providing you with the most relevant, accessible and upto-date information online, we’re happy to share that our website www.msqld.org.au has been upgraded for you.

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fIRST MS cYcLE DE fRANcE KIcKS Off The MS Cycle de France team have been training and fundraising for months in preparation of their epic challenge.

Eleven MS Cycle de France riders embarked 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 – all for MS. After five days of cycling more than 100km a day, the group were rewarded by witnessing the fourth stage of the Tour de France cycle along the streets of Nice; during its 100th Year anniversary.

Each of the riders have worked hard to fundraise their committed amount of a minimum $5,000 each and as a team they have hit their goal of $80.000, which will fund vital physiotherapy services for thousands of Queenslanders living with MS. Show your support of the team via the MS Cycle de France Facebook at www.facebook.com/MscycleDefrance Or if you wish to sponsor one of the riders, jump online at www.MScycledefrance.com.au

MS Queensland Project Manager, Bianca Williams, was amongst the group of cyclists to tackle classic climbs such as Col de Galibier (2,640m) and Col de la Bonette (2,802m) along the tour; “the MS Cycle de France journey has been somewhat life changing to say the least.

I feel incredibly privileged to join such an amazing and committed group of people who are so willing to put themselves out there to support people living with MS.”

HUNDREDS Of QUEENSLANDERS DIVE IN fOR MS This year started with a splash with five MS Swimathons being held in Redcliffe, the Gold Coast, Cairns, Townsville and Rockhampton. Thanks to hundreds of swimmers across the state, we have raised thousands of dollars to fund regional support services for people living with MS.

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The MS Swimathon is a fundraising initiative held across regional Queensland. Working together with community

groups, we hold several events each year to fund our work providing vital support services in regional areas of Queensland.

Across the state, participants donned their bathers and braved the weather; rain, hail or shine – to show their support for MS. Members from all sectors of the community, age groups and swimming capabilities committed themselves to the 12 hour swim relay.

We’d like to thank all of our amazing event participants and community event partners for making the MS Swimathon such a successful and enjoyable initiative. Two more events will be held later this year in Toowoomba and Jindalee – so check out www.MSswimathon.com.au for further details.

Join us for an amazing community day out, and dive in to support people with MS.

Ms MOONLIGHt WALK This year’s Moonlight Walk is gearing up to once again light up the night and pound the pavement for MS! Save the date friday 18 October pull out your walking shoes and join us step by step to fight MS. Register at www.MoonlightWalk.com.au and be the first to take up this year’s discounted entry offer.

BIG DINNER PARTY THANKS YOU

We experienced a vast variety of Big Dinner Parties from a Bond Casino Royale Night, an Op Shop Ball, a Bonfire Fiesta as well as a Hats and High Tea Party. All dinner parties were beautifully executed and allowed everyone to enjoy great food and great company, whilst raising awareness and money for MS. We’d like to extend a massive THANK YOU to all our amazing dinner party hosts, guests and supporters who

dined together this year in the fight to end MS. We were overwhelmed by the passion and dedication that went into producing each and every dinner party and we are extremely grateful for your efforts – it definitely leaves us inspired to continue towards our vision of a world free from MS. If you’d like more information on Big Dinner Party or want to host your own visit www.BigDinnerParty.com.au

MS LIFE – WINTER 2013

The Big Dinner Party cooked up a storm across Queensland, with over 140 hosts who all wined and dined guests to support people living with MS.

13

MAN

MS LIFE – WINTER 2013

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“By taking on the challenge of the MS Cycle de France, I’m hoping to show others that MS is not a life sentence.”

Manoli is workingt as MS Queensland’s very own IT specialist and has many reasons to be grateful to the MS cause.

ON LIFE

“MY QUALiTY Of LifE iS TrEMENDOUS. I LOVE TO ExERCISE. WHEN I DO I FEEL NOrMAL AND i DON’T THiNK ABOUT HAViNG MS, i THiNK ABOUT HOW LUCKY i AM THAT I CAN STAY ACTIVE.”

Manoli’s outlook wasn’t always so positive, especially after he was diagnosed with MS shortly before his 24th birthday. As someone who was always full of life, he admits to having periods of self-doubt.

“I was left wondering why me?”

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

“It was something of a shock to be told I had MS at such a young age.”

Manoli has been on his current treatment program for almost four years and says it has allowed him to continue his ‘keep fit’ regime.

“It’s been a life saver for me,” he said.

He recognises that not all people living with MS have the same mobility as him, but believes there are many benefits to keeping mentally fit as well as physically active.

Exercising has always been part and parcel of Manoli Archontoulis’ life, even more so since he was diagnosed with MS six years ago. The 30-year-old has always led an active lifestyle and has participated in several MS Brissie to the Bay bike rides.

“There is a massive mental component to this. Every time I get on the bike when I’m training, builds self-belief. It helps in keeping my mind strong. You never forget that you have MS, it becomes an everyday thing, but that has made me appreciate life even more.”

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

“The point is to take small steps in whatever you choose to do. I want to show people that there are so many things that you can still do despite having MS.”

Not only does he want to raise much needed funds for MS Queensland, Manoli wants to let other young people living with MS know that life doesn’t come to a halt following diagnosis.

“There is a false perception of MS, that you’re in a wheelchair for life, but I want to show people that is not the case.”

“Exercising has helped me stay strong. Knowing that I can still go out and exercise and stay healthy and active helps me manage my MS.”

And he is hooked on raising as much as he can for a charity that has provided him with the tools – and support – to carry on running, swimming and cycling.

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

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

MS LIFE – WINTER 2013

OLI’s OUtLOOK

“I wanted to support this new event. It’s my way of giving something back to MS Queensland, which has done so much for me.”

15

WITH NATALIE

ADVOCACy

NDIS UPDATE THE NDIS IS NOW A REALITY! Tuesday 7 May 2013, is a day that we should all remember. We hope it is a day everyone will recall when Premier Newman and Prime Minister Gillard together signed the agreement to roll out the National Disability Insurance Scheme.

We should all be proud that we have worked together to achieve the NDIS through sharing our stories, signing petitions, meeting politicians, joining rallies and hosting morning teas.

United in the disability community have shared our stories and together we have been heard.

Now that we have achieved the NDIS what does that really mean?

The NDIS is about a person centred system of support. It will look at a whole of life approach and work with individuals’ goals and aspirations and what is reasonable and necessary to reach these goals.

Over 410,000 Australians will be covered by the scheme and all Australians will have the security that support will be provided in the event of a permanent disability. Currently in Australia around 45% of people who live with a disability live in or near poverty. The NDIS will give us the tool to provide every Australian with the opportunity they should receive to live a more inclusive productive life.

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The NDIS will be fully rolled out across Queensland by July 2019.

WHAT IS THE NDIS? • the scheme will support Australians with a disability, their families and carers who, for the first time, will be given funding directly to cater to their individual needs; • it will help pay for carers, to give carers of people with a disability a break; • it will help pay for new wheelchairs tailored to individual needs; • it will fund home modifications to help people with a disability move around easier; • it will fund early intervention services, to help delay or lessen a decline in functioning; • the increase to the Medicare levy equates to an extra dollar a day for an average income earner • the change would collect $20 billion in its first five years; and • responsibility will be shifted from the states and territories to a national body.

The good news is the NDIS will deliver even more than this. For too long people living with a disability have been marginalised in our society; the NDIS will provide great assistance but it’s just the beginning to start to enable people living with a disability.

The NDIS will enable people to rise above our current 21 out of 29 OECD countries in employment participation.

We have a long way to go but by investing in better lives for people with a disability, their families and carers we will also be investing in a stronger Australia.

We will share more of what is being undertaken for the NDIS as this information becomes available. You can visit www.disibilitycareaustralia.gov.au for further information or contact our Advocacy Manager Natalie Walsh at natalie.walsh@msqld.org.au or call 07 3840 0823.

Ms

ENTERTA BOOKS O

MS Queensland is pleased to be selling Entertainment Books again this year. They are packed with discounts on food, accommodation, entertainment and so much more. But the best thing is that $13 from the sale of every book goes to MS Queensland to fund our program of services to assist people with MS.

HOW CARMEL LIVES POSITIVELY WITH MS

‘yEAR OF

yOUNG PEOPLE’ MS AMBASSADORS INTERVIEW NOW ON YOUTUBE

2013 is the Year of the Young Person, acknowledging the early age that people are most commonly diagnosed with MS. To show the MS community what being diagnosed with MS means for different people, our MS Ambassadors, Yvonne Kelly (diagnosed 1988) and Eleanor Rigden (diagnosed 2012) joined MS Advocacy Manager, Natalie Walsh (diagnosed 2005) to share their experience of being diagnosed and how the diagnosis impacted their life. The women talk about what they would say to someone just diagnosed and how the reality of living with MS differs now compared to when they were first diagnosed.

To share the experiences of these wonderful MS Ambassadors we encourage you to visit the ‘Year of the Young Person – MSQ Ambassadors’ video on our YouTube channel www.youtube.com.au/MSAustraliaQ. If you would like to share your story please forward your story to Natalie Walsh natalie.walsh@msqld.org.au or call 07 3840 0823.

INMENT N SALE

Natalie, Advocacy Manager

Ordering is easy: 1. you can order your books online at www.entertainmentbook.com.au/orderbooks/22005y2 OR 2. pop into our administration office at 286 Gladstone Rd, Dutton Park between 8:30 and 4:30 Monday to Friday OR 3. mail or fax an order form into us (order forms available on our website) If you have any questions about the Entertainment Books please contact Melissa Bragg at melissa.bragg@msqld.org.au or call 07 3840 0874.

“In December 1999, I started having double vision. I was 19 at the time; I was initially diagnosed by my Ophthalmologist as having Myastina Gravis. In early 2000, I also started to get tingling in my pinkie and ring finger on both hands. It was then that I had an MRI and was diagnosed with MS. I cried even though I had no idea what MS even was.

When I found out, I cried again, but I was in my second year of University studying Accounting. What were my options? Quit University and stay at home or keep going? My parents had already paid for the first two years of my degree and I felt I owed it to them to continue. But even more so, I owed it to myself. I remember reading a quote somewhere that said: “don’t let MS win,” and I lived by this then and I continue to live by it today.

One of my favourite movies is Dangerous Minds. It taught me that the most powerful verb in the English language is “choice.” Everyone has a choice in every decision they make. I have a choice in how I feel and what I do. I chose to continue my studies in Accounting and Business Management.

I chose to complete my CPA (Certified Practicing Accountant). I chose to get a full-time job. I continue to make this choice every day. Of course I have moments where I do feel down and hate that I have MS and have to continue to live with it for the rest of my life, but then I remember how far I’ve come, and with the help of my strong family and friend network, I am able to continue living my life to the fullest.

My story is short. I choose to keep my story short as I choose to focus on what I can do in my life.”

Written by carmel Raju

MS LIFE – WINTER 2013

n

Eleanor Rigde

17

Ms

qUEstIONs WITH TIM

THE ROLE Of

stAtINs

IN tREAtING Ms Hi all Only one question has come through this time but I think it is an important one and well worth this whole column, because it presents some interesting information and is currently undergoing some sound research into its role in MS. We are always looking at ways to slow and preferably stop the progression of MS, and Statins are being studied closely for any benefit to people with MS. But before I go on – very importantly – I will be discussing a drug treatment here. This is NOT a recommendation, nor am I suggesting that everyone with MS should go out and start taking this drug. I am answering a question and providing some information that is freely available. I don’t usually reference this column but at the end you will see where I have provided the information written here.

Statins are drugs that are amongst the most prescribed in the western world – basically they are cholesterol lowering agents but they also have anti-inflammatory properties, and there are many forms of this medication. Research into its possible role in treating MS has been going on for some time, with many small scale studies producing mixed results – some suggesting benefit to people with MS, some showing no benefit at all. A 2004 trial in patients with relapsing-remitting MS showed reductions in brain lesions as seen in MRI scans, suggesting an effect on the underlying disease process. Other trials were conducted in this form of the disease, which ultimately pointed to a lack of clinical benefit. One (very small) study even suggested there may be some harm in taking statins in combination with other MS treatments.

Recent studies have focused more on progressive forms of MS and are using much higher doses of the drug than would be used if treating cholesterol ‘issues.’ One of the most recent studies presented at a major MS conference last year suggested that brain atrophy – which means the brain ‘shrinks’ – was less in patients treated with high dose statins. The more and faster the brain shrinks – the worse the MS disability.

I must reiterate again – this is not advice – provided here are three different outcomes from research into Statins for MS: one better, one no difference and one possibly made it worse. Statins are drugs – and there are several well publicised side effects that include kidney and liver failure and muscle weakness.

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References Moses Rodriguez, MD, Department of Neurology et al: Statin therapy and multiple sclerosis disability in a population-based cohort Mult Scler March 2012 18: 358-363.

Lock, C. MBBS, PhD Are “statins” beneficial or harmful in multiple sclerosis? 16 Neurology October 28, 2008 vol. 71 no.

18 e54-e56 European Committee for Treatment and Research in Multiple Sclerosis: Source reference: Chataway J, et al “The MS-STAT trial: High dose simvastatin demonstrates neuroprotection without immune-modulation in secondary progressive multiple sclerosis (SPMS) – a phase II trial” ECTRIMS 2012; Abstract 38a.

Tim, MS Nurse Practitioner – 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 29 July 2013.

It is sometimes difficult to talk to your children when your own feelings are in turmoil following a diagnosis of MS. This popular resource can assist parents to decide when and how to talk with their children about their MS. The first talk you have with your children about MS is important. It opens the topic for discussion and sets the tone for further conversations about MS within the family. Evidence shows that children can cope with an enormous amount when adults are open and honest and children are made to feel that their feelings and opinions are important.

Download a copy today at www.msqld.org.au/ msresources2/information-on-ms or contact our InfoLine on 1800 177 591 for a version to be mailed or emailed to you.

The MS InfoLine can assist with resources appropriate to different age levels – with story books, activity pads, and resources for teenagers and older young people. Resources for friends, schools, teachers and other supporters of children with a parent with MS are available.

OTHEr rESOUrCES fOr ExTrA HELP fOr YOUr CHiLD Young carers on facebook This page is a closed group, moderated by MS Australia – ACT/NSW/VIC. People need to request to join the group, and the conversations and posts can only be viewed by approved members, which protect their privacy.

The group is aimed at teenagers and those in their early twenties – “we’re certainly not excluding people who may be a little older or may not consider themselves carers. In fact, a lot of people, especially young people, don’t really think of themselves as carers,” says Erin O’Loughlin, moderator.

Visit the Young Carers Facebook page by searching for the group on Facebook.

For more information about any of these resources, please email us at info@msqld.org.au or phone our InfoLine on 1800 177 591.

fROM THE cHAIRPERSON Of pwMS SUPPORT GROUPS This time of year is always busy for the MS community and I have enjoyed being a part the activities. From attending the ‘Living Positively with MS’ afternoon tea with Mayor Paul Pisasale and members of our MS community, to being involved in the inspirational MS Heroes Awards which were nominated by the MS community.

What a privilege to be able to attend the World MS Day reception at Government House with our MS Heroes and those who contribute to make a difference in the lives of people living with MS; including our donors, fundraisers, researchers and politicians.

Through each of these events, it has been a pleasure to be able to engage with MS Queensland members represented across many age groups and varied walks of life. We all have a different story and can be an inspiration to many.

Just as our MS Heroes were nominated by people with MS, their partners, their grandparents, or people from the community who greatly admire the work they carry out on behalf of others.

To read more about this year’s MS Heroes, visit page of this edition of MS Life.

Remember there are many ways you can engage with MS Queensland. Perhaps you would like to join us at the Moonlight Walk, or become involved with your local support group. Keeping up to date with all the activities on offer is made easier for you via the new MS Queensland website www.msqld.org.au and Facebook page. Or attend the upcoming MS Queensland Annual General Meeting (AGM) which will be held on Friday 8 November 2013. It would be great to see you there if you can make it!

Please do not hesitate to contact me at jennifersaunders3@bigpond.com I look forward to hearing from you.

Jenni pwMS Support Groups Chairperson

MS LIFE – WINTER 2013

Ms Ms REsOURCEs WWW.MSQLD.ORG.AU

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MONtH OF AUGUst

18 OCtOBER

MS Readathon

MS Moonlight Walk

www.msreadathon.org.au

www.MoonlightWalk.com.au

MONtH OF NOVEMBER

1 NOVEMBER

MS Swimathon Toowoomba MS Swimathon Jindalee

MS Menâ&#x20AC;&#x2122;s Lunch

www.MSswimathon.com.au

www.msqld.org.au

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

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