MS Life Summer 2013 by MS Queensland

MSLIFE. MS SUMMER 2013

QUEENSLAND’S PREMIER MAGAZINE FOR PEOPLE LIVING WITH MS

GLOBE TROTTING

STILL POSSIBLE LISA’S STORY Lisa’s trip to Europe

ELEaNOR’S WaLK FOR MS

pg. 10

pg. 11

pg. 19

pg. 20

How ‘Jules’ lives positively with MS

Holistic health and MS

Self-advocacy. What do you know The road to success about the NDIS?

LETTER fROM THE EDITOR

LETTERS TO OUR MANAGER Of SPEcIALIST EDUcATION, TIM Dear readers, I can’t believe Christmas is nearly here – how the year has flown by! Not long ago I had the pleasure of personally fundraising for MS Queensland in the recent MS Swimathon held in Toowoomba in November. While I hadn’t swam laps in a pool since 1996 I did my bit for the cause, swimming 60 laps (or 3km) and raising almost $1,500 which will go to providing MS support services. The good news is MS Swimathon is heading to six different Queensland towns before the end of June 2013 – on the Gold Coast, Redcliffe, Cairns and Townsville just to name a few. Head to www.MSswimathon.com for more information on the dates and locations of a swim near you! This edition of MS Life features young Eleanor Rigden on the cover who was diagnosed with MS in 2011. Eleanor has such a bright and infectious personality. While her MS journey is in its infancy, she, along with all the people living with MS that I have the privilege of speaking to, continue to have a happy and positive outlook on their future. Not a day goes by that they are not thankful for the life they have and for the family and friends who surround them. I hope you join them in living positively with MS and getting the most out of life. 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 have a Merry Christmas and I wish you and your families a Happy New Year!

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 1 February 2012.

MS QUEENSLAND TRADING HOURS The MS Queensland offices across the State will be closed over Christmas from midday Friday 21 December, 2012 and will reopen on Wednesday 2 January, 2013 inclusive. If you are having any issues or concerns with your MS during this period, please contact your local GP or closest hospital emergency department in the first instance. Our Psychologist Aart Simons will also be available for any urgent client support during this time.

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

Kindest regards MS LIFE – SUMMER 2013

Melanie, Editor, MS Life

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 Eleanor Rigden for the use of her image on the cover of this publication. Photo by Ryan Smyth Photography.

CONTENTS SUMMER 2013

I’m writing this note after meeting Kate. Although experiencing the increasing effects of MS, Kate works hard to keep herself positive, active and striving for her future. Her gritty determination is never in doubt and when she says she hopes for better days, treatments and even a cure for MS, you know she means it. Her outlook is not a blind wish or vague dream but an unwavering commitment to making every day count despite her circumstances. Kate truly believes that when the world shouts, “give up!” hope whispers, “try one more time.” Some people think hope is just a wish that might come true one day (if you’re really lucky). To others, hope is a determination that won’t give up on something better just-around-the-corner. MS Queensland’s vision is “a world free from MS and its devastating impact” and “hope” is also one of our organisational values. I’m sure some people see these words as just idealistic optimism and a pipe dream at best. But I have come to understand there is a very different definition of hope – the one that Kate holds onto.

cOVER STORY Eleanor’s walk for MS anor Rigden

Ele

PAGE 2–3

Letter from the Editor From the CEO

PAGE 4–5

Exercise programs, Dutton Park After-Hours Australia rolls out world first MS prevention trial 25 years of physio celebrated

PAGE 6–7

Globe trotting still possible ‘Heartmoves for MS’ scholarship

PAGE 8–9

Eleanor’s walk for MS

PAGE 10–11 How ‘Jules’ lives positively with MS Holistic health and MS PAGE 12–13 Events that help people living with MS Biggest-ever Moonlight Walk ‘Spring Back to Life’ fundraisers for MS

Last month in his re-election acceptance speech, US President Barack Obama spoke about this same type of hope, when he said “…I have always believed that hope is that stubborn thing inside us that insists, despite all the evidence to the contrary, that something better awaits us so long as we have the courage to keep reaching, to keep working, to keep fighting.”

PAGE 14–15 Our Conference and AGM wrap up Annual Report now available

In the same way, MS Queensland hopes that our vision will be achieved. We want the world to be free from MS and its devastating impact; and as we stubbornly reach, work and fight for those living with MS, we actually believe we turn that hope into reality.

PAGE 18–19 Self advocacy. The road to success

Season’s Blessings and a Happy New Year!

Lincoln, CEO

PAGE 16–17 Rehab day therapy unit at Greenslopes Kellie’s MS hasn’t stopped her working Alemtuzumab trials show encouraging results

PAGE 20–21 MS questions with Tim What do you know about the NDIS? Advocacy with Natalie PAGE 22-23 Support group celebrates 20 years World-first website – making sense of MS MS Resources People with MS Support Group Update PAGE 24

2013 Calendar of Events

MS LIFE – SUMMER 2013

fROMthe CEO

EXERCISE PROGRaMS AfTER-HOURS ExERcISE PROGRAM ExPANDS AT DUTTON PARk Many people living with MS have said that they do not participate in regular exercise and are much less active than other people they know. Exercise is an essential part of improving the quality of life for people living with MS. MS Queensland is very excited to be providing the popular “After-Hours Services” once again during 2013 and have some terrific sessions planned for the year. There has been a substantial increase in requests and interest to participate in this service among the MS community. Our 2013 program will consist of many new sessions as well as the continuation of popular sessions from this year.

MS LIFE – SUMMER 2013

Our After-Hours Services are available to people who have no limitations on their ability to physically perform their day-to-day activities, apart from the possible need to manage the effects of fatigue and a busy life. People whose MS is stable and have no mobility aide whilst walking during their usual week can participate in the sessions offered. We anticipate that people attending these sessions will have restrictions on attending the MS Queensland Clinics during the hours of 8am – 4pm Monday to Friday (e.g. due to employment) and wish to have fun

socialising with people, whilst gaining the many physical benefits from the classes. We will be offering a variety of sessions in 2013, including Pilates, Aquatics, Yoga, Feldenkrais (this is an educational method focusing on learning and movement that can bring about improved movement and enhanced functioning) and Tai-Chi to name a few. The goals and benefits from attending any of our After-Hours sessions are: • the opportunity to participate in appropriate, beneficial and safe physical activities • to begin to determine what exercise type is right for you • to learn about your individual requirements for exercise and to be able to communicate your specific needs to an exercise instructor in the community • to assist you to gain knowledge and the confidence to participate in these opportunities in your local community; and • to have lots of fun and meet new people. The year will kick-off with a ten-week Aquatics/Pilates Program commencing

in February 2013 from 5:30pm – 6:30pm at our Dutton Park Clinic. In the first five weeks the participants will complete Aquatics and in the second five weeks they will complete Pilates. Depending on the program, course costs start at just $50 and all program fees must be paid prior to the commencement date. The sessions will be held at the MS Physiotherapy Department gym and pool, Denbigh Street Entrance, Dutton Park. Ample onsite parking is available. So why not come along and have a laugh while getting some worthwhile exercise! Spaces are limited so make sure you book early. Information regarding this service can be found on the MS Queensland website www.msqld.org.au or by calling the MS Queensland Info Line on 1800 177 591 or by contacting the Physiotherapy Department Receptionist and Administration Assistant Linda Wilson-Marks 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.

auSTRaLIa ROLLS OuT WORLd FIRST MS PREvENTION TRIaL

A world-first clinical trial set to take place in Australia and New Zealand, will test whether Vitamin D can prevent MS in those at risk of developing the disease. The ‘PrevANZ study’ will focus on the possibility of using Vitamin D supplementation to prevent a diagnosis of MS following a person’s presentation with the first symptoms that may lead to a diagnosis. It will also test appropriate dosage levels and safety; information that may eventually lead to an effective prevention strategy for MS. Tasmania, with the highest incidence of MS in Australia, will play a key role in the trial. for more information on this trial visit the MS Research Australia website www.msra.org.au

years of PhySIO CELEBRaTEd

The morning began with guided tours of the services area for guests. Each tour concluded at the photo board, where photographs from the past four decades were culminated into a wonderful display. The photographs showcased four decades of past and present staff at work with clients in the gym, and upstairs in Granston Lodge where physiotherapy for MS began in Queensland in the 1970’s. The more formal proceedings then got underway with a welcome from Senior Physiotherapist, Ann McDonald, our CEO Lincoln Hopper then began with a speech about his thoughts on physiotherapy and the potential for continued progress in-line with best practice in the future. Tim O’Maley spoke about the current outlook for people with MS from a specialist nurse point of view. Natalie O’Donohue, Manager of Physiotherapy and a physiotherapy staff member for the past 25 years, was the keynote speaker for the event. She discussed the ever changing world of neurological physiotherapy, how

physiotherapy continues to evolve as research progresses, and how it continues to shape what we do with clients in an attempt to maximise their physical well-being. Our Director of Services, Karen Quaile discussed the future of the Physiotherapy Department in-line with the new 2020 MS Queensland Strategic Plan and how our physiotherapy service will continue to evolve. The celebrations finished with a sociable morning tea, and a demonstration by staff and clients of our ‘Movement to Music’ exercise group, introduced earlier this year across all of our physiotherapy clinics. The aim of the ‘Movement to Music’ group is to build upon gains in balance, core stability and mobility from the participants’ previous physiotherapy sessions. Participants use their balance strategies and core stability activation to complete specific movements to music. This activity applies the principles that promote neuroplasticity, which are participating in physical challenges that are diverse, fun, and engaging for the participants. Participants also learn that the tools are transferable to the functional activities of daily living. Thank you from the Physiotherapy team for being part of our special celebration. For those who were able to attend we hope you all had an enjoyable morning. We certainly did!

MS LIFE – SUMMER 2013

We had fantastic attendance at the special 25th birthday year celebrations in the physiotherapy gym on October 3. As a Physiotherapy team we were exceptionally happy to meet past and current staff from all areas of MS Queensland, and current clients utilising our range of physiotherapy and exercise therapy services.

WRITTEN bY OUR PHYSIOTHERAPY TEAM

GLOBE

TROTTING

STILL POSSIBLE LISA’S STORY

Many people with MS expect that as their life changes, so will their opportunities to experience the world through overseas travel. But it doesn’t have to be that way. We recently met Lisa Meldrum, a lady living with MS at our Annerley Apartments who proves that international travel is possible; one trip at a time. Lisa, aged 53, has recently returned from an extended European holiday with her family, and wanted others to know that there is life after an MS diagnosis. With the help of her new personal holiday carer Margot Phillips, Lisa was able to accompany her son Lachlan, sister Julie, and brother-in-law Murray on a “wonderful” European holiday to countries including Greece, Malta, Turkey and Spain. “It was brilliant, there were so many places to see, it was just so wonderful and after my trip to Turkey I’ve got enough Turkish Delight to last me a lifetime!” MS LIFE – SUMMER 2013

The concept of travelling around the world with a chronic illness is often daunting and requires a lot of pre-thought and preparation before travelling. But if you take the time to plan your trip properly, you can have an amazing relaxing holiday just like Lisa did; with the support of a holiday carer’s service like Margot’s.

It was Lisa’s sister Julie who found

Margot’s services through her company’s travel agent. After initially meeting with Margot to discuss the travel options, Julie and Lisa planned a cruise to New Zealand with Margot as her carer as a ‘trial holiday’ in anticipation of bigger trips. Margot, whose specialty is travelling with those who have some level of disability and require a high level of care, says she saw a gap in the market where seniors and people with a disability wanted to travel but weren’t able to. “It is my pleasure and privilege to play a part in helping people to live life… the hard work and challenges experienced by me are far outweighed by the good experienced by all,” she said. Margot said first and foremost it’s important that the client (in this case, Lisa) and their carer get along. Good planning will also make the trip smoother. “Lisa’s first adventure to New Zealand last year which she originally thought to be impossible, has instead led to other trips, including her holiday to Greece,” says Margot. “Put quite simply, Lisa is able to dream again.” And with these dreams comes a lot of planning. European countries aren’t known for their ease of access or wheelchair accessibility, and flying internationally can also be challenging for those with mobility problems.

In a move to accommodate for her disability, Lisa’s two long haul flights into Barcelona from Brisbane were flown Business Class. In order to get around the various European countries, her wheelchair was fitted with lighter, titanium wheels and a motor to help her manoeuvre across the cobblestoned pavements and tackle steeper terrain. Other aspects that made Lisa’s journey smoother included prebooking and using a hoist and shower chair at each place she stayed, and travelling in special access taxis. The locals were also more than happy to help Lisa experience the best Europe has to offer! Although the planning was time consuming and costly for Lisa and her family, they say it was all worth it for the experience Lisa was able to have of different countries, people, and cuisines. Lisa’s carer Margot said Lisa was ‘in her element’ in Europe, and recalls seeing a noticeable change in Lisa’s outlook on life. “I have noticed a significantly positive change in Lisa’s attitude and self confidence. She is swimming

fOR MS ScHOLARSHIP

“Lisa was able to join her family on a European holiday, spend two weeks of quality time with her son, whilst having the pleasure of her sister and brother-in-law’s company. This is priceless.” “I feel Lisa has become more excited about life and I feel as though I’ve become one of the family.” Now that she knows she can, Lisa wants to travel more often and looks forward to trips, including short getaways in Australia. Lisa’s sister Julie believes Lisa has proven that anything is possible, and that MS is not a barrier to anything. When asked about her next trip away, Lisa says Asia is next on the itinerary.

To assist and encourage Heartmoves leaders outside of the Brisbane area to attend the training, MS Queensland recently awarded one person outside of Brisbane a scholarship to cover the cost of the re-accreditation. This year, applications were sought from exercise professionals working in the South West area of Queensland and the scholarship recipient was Roslyn Hackett, a ‘Heartmoves’ leader from Ipswich. Roslyn has been teaching ‘Heartmoves’ classes for over a year and received glowing reports from participants in her current class. One of the participants, Deborah Pringle, said “we are always laughing and having fun as we exercise. Roslyn

keeps us all interested by being very motivational.” Roslyn will be teaching her classes in Ipswich. Once she has a suitable number of interested participants living with MS, the first class is expected to be held on Tuesday 15 January 2013 from 10:00am to 11:00am. The ‘Heartmoves for MS’ class is open to everybody with MS and it encourages participants to: • increase physical activity • maintain a healthy lifestyle • have fun and meet new people • learn about their individual capacity for exercise; and • assist them to gain the knowledge and confidence to participate in exercise activities at home. MS Queensland plans to support Roslyn over the next few months with setting up the class and offering ongoing support as needed. We look forward to working with her and the people with MS attending the class. To express your interest in attending Roslyn’s Heartmoves for MS class, please contact Roslyn directly on 0414 509 208 or email her on Roslyn.hackett@gmail.com

MS LIFE – SUMMER 2013

again and has made room for new friendships – things Lisa didn’t think were ever possible,” she said.

In October this year, MS Queensland held its first ‘Heartmoves for MS’ re-accreditation program at the Dutton Park Clinic. This is the beginning of an exciting partnership between MS Queensland and the Heart Foundation, that will enable people with MS to gain access to additional exercise options in their local communities. The one-day accreditation course was designed to provide Heartmoves leaders with the skills and the knowledge to safely and effectively deliver and adapt existing Heartmoves programs for people with MS, who are keen to increase their activity levels through exercise.

“Vietnam! I’ve always wanted to go.” If you are interested in Margot’s services, please contact her directly via email margot.icare@yahoo.com.au d Janine

Roslyn an

Heartmoves fo r MS training

ELEaNOR’S WaLK FOR MS

MS LIFE – SUMMER 2013

MEET ELEANOR RIGDEN, DIAGNOSED WITH MS LAST YEAR AT JUST 22.

“Life with MS is so different. But it’s gradually changing into more of a familiar landscape. When I was first diagnosed, I locked myself away and didn’t want to do anything. All the boring stuff was too depressing, and I was scared all the fun stuff might make me sicker. But over the past 18 months, I have gradually changed what having MS means to me. I no longer allow it to define my activities, or anything else in my life. It’s part of my life – but not all of it. I won’t say I’m not scared of what might happen, because that would be a lie, but I don’t walk around acting like I’m wrapped in bubble wrap anymore.

“Life is for living, after all!” MS affects my balance, my peripheral vision, and I get vertigo when I’m walking around sometimes. Oddly enough, not when I’m actually in high places though. I’m also fairly uncoordinated; I can’t walk in a straight line much. It isn’t all the time – it flickers on and off. A nurse I see says it may be when my core temperature rises – so if I get the flu, or a tummy bug, or my nose blocks, or even sunburn, I get worse. But sometimes it’s random and they don’t really know why it flares up when it does. I blacked out in a library once, which was during an English winter so the heat theory didn’t work out there! The medication can sometimes be worse than the symptoms, because

I’ve had to learn how to inject it every week and I hate needles. The side effects Elean this ye or was a to are awful... deep muscle p ar’s M S Mo fundraiser pains, incredible temperatures in onligh t Wal k and sleeplessness are the main ones. But physically, the worst thing is the fatigue... some days I am too tired to even function, I just sit at my desk and stare at my computer. But I think this energy drain partially comes from the psychological side of it too. MS is always on my mind, I worry if I should change decisions I have made about my future because of it. I worry that any day and AIDS, and every other horrible might be the one that I get an attack disease that destroys people. My in some public space...it must be very mother had cancer, and she instilled draining for my mind. in our family a great belief in doing things and changing things, rather than I did the MS Moonlight Walk this year sitting around waiting for life to come because I refuse to believe that there to you. She was an avid campaigner, isn’t a solution to every problem. she did the Relay for Life up until the There is a cure for MS out there, year she died, and I will have the same just like there will be one for cancer, determination in attacking MS. I will be optimistic to my last breath, and if I don’t see MS cured, I expect I’ll be very happy with myself for doing everything I could. Right now, that is fundraising for MS Queensland, getting the word out there, and helping people to understand that we are all in this together and we should help one another when we can. To me, the MS Moonlight Walk is a step towards a future without MS. I was born and bred a fighter... and I want to keep raising funds for MS as long as possible!” And she is. Eleanor was one of 2,880 walkers this year who together broke all records and raised more than $300,000 for MS. What an amazing achievement! We thank Eleanor and all the other walkers for being part of our special event and look forward to seeing you all at next year’s MS Moonlight Walk!

MS LIFE – SUMMER 2013

Since being diagnosed with MS last year, this young woman has taken MS head on and raised more than $2,600 for our MS Moonlight Walk with her team, ‘Team Discovery’. We met Eleanor recently and asked her to share her experience, and how she’s handled the news since her diagnosis.

hOW ‘JuLES’ LIvES POSITIvELy WITh MS WRITTEN bY ‘JULES’ HUNTER My name is Jules. I am 46, and I have multiple sclerosis plus a rare disease Erythromelalgia (EM). I wish to dedicate this story to Cerise, Lorraine Marshall’s daughter who died at age 31 from MS, Kelly McCoy Beaty (from Dallas, USA) whose husband died from complications with Erythromelagia and my good friend Chelle Warren who has just been diagnosed with grade two Glioma (brain cancer). Chelle just had a baby girl and has two other young children. Chelle has looked to me as an inspiration. But now I look to her as an inspiration in life. I have no children and now understand why I was not to have children. I would also like to dedicate this story to my mum and dad. Mum almost lost her life a year ago with a massive bleed on the brain (subdural haematoma). Mum also has rheumatoid arthritis. My dad has an aggressive form of rheumatoid arthritis. This is who I get my positivity from and love of life. MS is a chronic disease that attacks the central nervous system, the brain, and spinal cord by interfering with nerves that send messages to different parts of our body. The nerves can be compared to an electrical wire. The plastic that surrounds the wire being the myelin sheath that protects the nerves. The body’s immune system attacks the myelin, exposing the nerves short circuiting, so you may think you’re moving your toe but it doesn’t happen. I was diagnosed with relapsing-remitting MS in 2004 after an exhausting year of tests and neurologists opinions. This is common for this “mystery auto-immune” disease. I had no idea what MS was, only participating in the MS Readathon when I was younger. I celebrated the news, as I could now understand the symptoms that I experienced over many years.

MS LIFE – WINTER 2012

I was diagnosed with Erythromelalgia in 2010. EM is a rare and frequently devastating disorder that affects all my extremities. Primary EM is inherited, which Kelly’s children have and secondary EM develops secondarily to conditions such as MS. My feet, hands, knees, and face burn with intense heat and pain. I was told by my neurologist that that burning (peripheral) was not related to the MS. With MS you may feel hot but physically don’t appear red. For the first time this winter my hands flipped to the opposite, uniphasic Raynauds’s phenomenon. My hands turned blue (and still do), and were covered in chilblains. Skin

Don’t Worry Be Happy

Jules with her paren Sue and Simon Wiscts her

was ripped off from the dressings. My nails on the right hand are falling off from all the trauma. I now sleep with the air conditioner on and need to protect my fingertips, but my palms burn from the EM. When out my constant companion is now my mini fan for the face which gives some relief. However, I can use my hands to cool my face. When younger I played many sports including tennis and netball, and was on a music scholarship (oboe) during my high school years, trying to achieve as much as I could. I now know why I had burning pain, numbness, paralysis, vertigo, immense fatigue, speech problems and muscle spasms. I became regularly frustrated when unable to achieve my goals. I would push myself more, thinking it would help. During my working life the same happened, beginning to think I was imagining what was happening with my body. I no longer work as there is uncertainty of how I feel from day to day. However, I live a normal life, and managed to gain my diploma in Financial Planning five years ago. The difficult part of the MS diagnosis was telling family and friends, and watching different reactions to my news. I was told MS and EM are “gifts” because I can cope with my positive attitude, independence and love of life. I am able to keep MS symptoms under control with diet, rest, exercise and limiting stress. I cannot control the EM as easily. When I meet people, the common response is “Oh, but you look so good, you would never know.” My amazing mum always taught me ‘If you look good, you feel good.’ I love my life and wake each day in anticipation of what the day will bring. Simple things like having coffee with my beautiful mum and special friends, walking along the beach, and chatting to my neighbours make me so happy. My life would be incomplete without my special mum, dad and close friends. The support I have encourages me to achieve my goals with this new beautiful life. I remain positive that the causes and a cure are in sight with all the research and awareness of MS and Erythromelalgia. Where I live, Sunshine Beach, Noosa and surrounding communities have such a majestic and special feel, like no place on earth. “My life is good, so very very good.” Tehlia Jules Hunter

Holistic

HEALTH AND MS

Jenny’s husband was diagnosed with melanoma in 2004. Sadly, from the outset, they knew it was an aggressive melanoma and within weeks it was found in her husband’s lymph nodes. Mainstream medicine had no treatment to offer, but Jenny and her husband were determined to do everything possible to give him the best chance of surviving. They attended The Gawler Foundation’s ten-day Life and Living cancer healing retreat in Melbourne, where they met other people who were also confronted with the reality of living with cancer. Jenny said “to be honest, I was not really looking forward to the retreat – no television, no newspapers, no contact with the outside world, no chores, no meals to prepare, and nothing to do but focus on my husband and myself and the reality of our situation. It was actually quite scary to slow down and focus on the present moment, as it was so different from the busy world we lived in.” “I need not have been worried at all. After the first day, I was so relaxed. The environment was so peaceful and I found comfort in knowing that we could have some control over the course of this illness. My outlook on life changed completely as I experienced the workshops, the meditation, the healthy organic food, and the company of others

who were so open and honest about their journey,” Jenny said. At the end of the ten-day retreat, Jenny and her husband felt much stronger, and left knowing they could cope with whatever came their way. “My husband stayed fit and healthy for the following six months, even though his melanoma had spread to his liver and lungs. Adopting a healthy lifestyle through good diet and exercise, and having a realistic attitude to our situation enabled us to have quality time as a family. Sadly, my husband’s condition deteriorated and it was only in the final weeks of my husband’s life that his quality of life diminished. My husband passed away nine months after we attended the retreat.”

tain in dle Moun 10 ra C g in lk 0 Jenny wa ul Tasmania in 2 beautif

“Attending the retreat was one of the best things we did following my husband’s diagnosis. Even though we did not have the outcome we so desperately wanted, the retreat gave me the confidence to know that we could work our way through what was the most difficult period of our lives.” “Since my husband passed away, I have often thought that attending the retreat

was so helpful for me as a carer and family member. It opened conversations about death that had been almost impossible to engage in prior to attending the retreat. It was an environment that was so different from our ‘death denying’ society, where death is often seen by the medical profession as a failure,” she said. In June 2011, Jenny was diagnosed with MS. She said she immediately knew what course of action to take to help her manage. “I attended The Gawler Foundation’s five-day Overcoming Multiple Sclerosis healing retreat. The lifestyle I adopted after attending the retreat in 2004 was still with me, however, I felt it needed some ‘fine tuning’,” Jenny said. “I also wanted to meet other people who had been living with MS, to hear their stories and to make sense of my diagnosis. The MS retreat fulfilled these needs and many more. The educational aspect of the retreat was so valuable. I came away from the retreat knowing I could better control and manage the progression of my illness,” she said. Jenny said she had not had any MS symptoms since her diagnosis – “sometimes I even forget that I have MS.” “I am healthy, well and able to do everything I did prior to my diagnosis. In fact I am doing even more than I did before – a PhD is not a ‘walk in the park’. I believe The Gawler Foundation’s lifestyle principles that I have adopted give me not only physical benefits of well-being, but more importantly they provide holistic benefits that have enabled me to pursue a path in life so different from what I had imagined.”

MS LIFE – SUMMER 2013

The use of complementary or alternative medicines (CAM) and therapies with MS is becoming a growing trend. In the United States, about half to three quarters of people with MS use some form of CAM. One quarter to three quarters of people with MS have been reported to use CAM in studies conducted in Europe, Canada, and Australia. We recently spoke with Jenny Fox from Kangaroo Point in inner-Brisbane who explored alternative therapy to help her cope with her MS.

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 SWIMATHON EVENTS The MS Swimathon initiative has developed into an engaging community event, providing an opportunity for regional communities across Queensland to support local people living with MS. Local pools, service clubs and MS Support Groups join together to hold a fun-filled 12 or 24 hour swim relay. Not only do these events raise vital dollars for MS support services, they also raise awareness of MS and its varying impact on peoples’ lives. During the first half of 2013, two NEW swims will be launched in Rockhampton

and the Sunshine Coast. The dates and details are yet to be confirmed, but stay tuned for more information. In total, eight events will be held throughout the year in Cairns, Rockhampton, Townsville, Sunshine Coast, Redcliffe, Jindalee, Toowoomba, and the Gold Coast. Jump online today and check out a swim near you at www.MSswimathon.com.au Whether your preferred stroke is doggy paddle or freestyle, all are welcome to dive in and support people living with MS!

MS cYcLE DE fRANcE A brand new exciting, epic, and enduring event for MS Queensland is being launched in 2013! The MS Cycle de France is an elite cycling event with a purpose – to raise $80,000 for people living with MS.

MS LIFE – SUMMER 2013

In June 2013, a group of committed cyclists will board a plane to France ready to commence an eight-day cycling tour through the French Alps. Over 525km will be ridden from Archamps to Monte Carlo via the Col du Galibier and many other ‘classic climbs’. Cyclists will be rewarded for their efforts by witnessing the 4th Stage of the Tour de France as it passes through Nice. Not only will each cyclist have completed this once in a lifetime challenge for MS Queensland, they will be in France to share in the celebration of the 100th Year Anniversary of the Tour de France. Bianca Williams, our Project Manager for MS Cycle de France, is also

participating in the event with the riders. She has built an online event blog and said “When I applied for the position of Project Manager at MS Queensland eight months ago – the LAST thing I expected was to be managing and participating in an eight day cycle event through the French Alps, during the 100 year Anniversary of the Tour de France whilst raising awareness and vital funds for people in Queensland living with MS! But I suppose the best things in life are often unexpected and some people are just lucky!” Why not jump online and follow the riders’ training and fundraising progress – the event participants are attempting an impressive physical and fundraising challenge, and would appreciate your support whether it’s through an encouraging word or by sponsoring them. Check out www.MScycledefrance.com.au or the Facebook page to leave a message! Allez, Allez!

BIGGEST-

EVER raises big bucks

More than 2,880 people descended on South Bank for a 10km walk along the Brisbane River under the light of a full moon, to raise a total of $300,176 for MS. The money raised helps MS Queensland fund vital support services for people living with MS across the State. Our CEO, Lincoln Hopper said we smashed last year’s fundraising goal of $180,000 three weeks before this year’s walk, which shows the incredible level of enthusiasm of all participants. The course took families, corporate teams, community groups and a number of people living with MS along the Brisbane River, beneath the Kangaroo Point Cliffs, across the Story Bridge, through the Botanic Gardens and back over the Goodwill Bridge to South Bank. A number of families and work colleagues also took part together, taking the opportunity to dress in an array of weird and wonderful costumes for the MS cause. “The brilliant team of Star Wars Stormtroopers was definitely a crowd favourite this year and they completed the MS Moonlight Walk in full replica costume,” Mr Hopper said. One of the top fundraisers was 35-year-old Nicole Gallagher, who was diagnosed with MS last year just years after her own sister was diagnosed with MS. Ms Gallagher completed the walk with her team, Madly Striving for a Cure for MS, who together have raised almost $10,000.

‘Spring Back to Life’

fundraises for MS WRITTEN bY GEOff ASHENDEN, A cOMMUNITY fUNDRAISER fOR MS QUEENSLAND

Deb and I had been looking to do something to repay the incredible kindness and assistance Deb got from MS Queensland following her MS diagnosis. When the idea came up to put this concert together we jumped at the chance. Ian Smith approached MS Queensland to get their authority and off we went. Ian did a lot of work on the practicalities of sourcing the venue and putting it all together, and I took care of the programming and musical preparation. We’re so grateful to all of the people involved. Everyone we asked was keen to participate and we had clients and their families asking if they could do anything to help, so we had a small army of helpers on the day. The raffle really took off and we had so many donations that we ended up with a dozen prizes to give away! The concert was a real success with about 150 people in attendance and about $2,500 raised for MS. We hope we can make this perhaps a biennial event, so the next one will be something to look forward to. It was good to have such a mix of performers from secondary school students to tertiary students and adult professional singers. We owe special thanks to Wavell SHS and Principal Jeff Major for donating the use of the hall and also to the Federal Member for Lilley, Federal Treasurer and Deputy Prime Minister Wayne Swan, who agreed to act as Patron.

We would like to thank everyone that helped to make this year’s walk the biggest ever and we look forward to celebrating the 15th year of MS Moonlight Walk next year.

Like most people with MS, Deb’s life has changed dramatically since her diagnosis in 2004. Learning to live with MS fatigue has meant that Deb’s had to give up paid employment and adapt to interacting with family and friends on a more flexible timeframe. Some days are better than others, and plans to do things work out. Other days we have to accept that it’s better for her to stay home and rest. Deb was disappointed that she wasn’t able to attend the ‘Spring Back To Life’ concert in person, but was pleased that she’d been able to listen to these wonderful singers on the previous weekend in rehearsal in the studio at home.

For more information on the MS Moonlight Walk visit www.MoonlightWalk.com.au

To become a community fundraiser contact us on 07 3840 0887 or email julie.hanlon@msqld.org.au

“As my sister and I both have MS we are madly striving for a cure. The support people have shown by donating is amazing and the awareness of what MS is in the community has definitely grown since last year,” Nicole said.

MS LIFE – SUMMER 2013

IT JUST KEEPS GETTING BIGGER AND BETTER. THE 14TH ANNUAL MS MOONLIGHT WALK WAS RECORD BREAKING ON ALL ACCOUNTS.

OUR

CONFERENCE

aGM

AND

WRaP uP

This year’s Annual General Meeting held on 9 November had record attendance and was held at the Southbank Institute of Technology. We expanded the program to include a half day Conference with special guest presentations from MS Research Australia’s Dr Lisa Melton and Fiona Anderson, the State Campaign Coordinator for the National Disability Insurance Scheme (NDIS). The day finished with an uplifting drumming group performance where everyone got involved! For those who were unable to attend this year’s Conference, we have released the MS Research Australia presentation on our YouTube channel www.youtube.com/msaustraliaQ and a photo gallery via our MS Queensland Facebook page www.facebook.com/msqld We would like to thank all members for their interest and attendance at this annual meeting and look forward to building further upon the successes of the past year in the months ahead. To help us improve on the Conference and AGM next year, please provide your feedback (good or bad) to us at mslife@msqld.org.au

Havin g fun and C at our AG onfere M nce

By being a member of MS Queensland you are able to support the services we provide and the research projects we fund. To become a member for just $22 a year, simply call 1800 cURE MS or visit www.msqld.org.au to complete the application form. LIFE

Autumn Edition 2009

LIFE

Queensland

MSLIFE. MS Life AUTUMN 2012

QUEENSLAND

QUEENSLAND’S PREMIER

Giving life back

MAGAZINE FOR PEOPLE

LIVING WITH MS

LIFE

Autumn Edition 2009

MSLIFE. MS Life AUTUMN 2012

QUEENSLAND

QUEENSLAND’S PREMIER

Giving life back

THIS ISSUE CEO’s Desk

Volume 3 Spring Edition, September 2008

Brissie to the Bay

Services to

support you

THIS ISSUE

& taking control

CEO’s Desk

11 12

Introducing Facebook

How a young mum won’t

let MS hold her back EMPLOYMENT AND

pg. 8

Nominate your MS Hero

pg. 12

Working with MS Workshops

MS AWARENESS WEEK

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

pg. 15

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

MS AND SES

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

bri

for

support you

11 12

Lisa & Sandy tell...

How a young mum won’t

let MS hold her back EMPLOYMENT AND

pg. 8

Nominate your MS Hero

pg. 12

Working with MS Workshops

bEcOME A

GET PHYSICAL

Brisbane’s bigg ride celebrates its biggest ever

Multiple Sclerosis Society

dge

erson with MS

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

ORAL TREATMENT JOINS PBS

dentified on genetic ibute to

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

TREVOR FARRELL: GIVING LIFE BACK We celebrate the end of an era as Executive Director Trevor Farrell prepares to retire after nearly 30 years

- 4 June The official launch

Kate finds her dream job

MS brought

GIVING LIFE BACK

BOB AND KAREN’S LOVE

STORY

FOR THE CAUSE

The ambitious program to provide integrated and dignified care

Multiple Sclerosis Society

of Queensland

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

Milligan

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

Summer Edition 2009

LIFE

MS Life

QUEENSLAND

Spring 2010

MS Australia – QLD

Questions about MS?

We’ve got the answers you’re looking for

LIFE AT ANNERLEY...

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

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

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

Jonathan Loraine and Bruce

MS Australia – QLD

Life at Annerley.... COMPLETED!

MS gene discovery

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

PwMSQ

Meet the Queenslanders supporting MS research and regional services

MS Life

MS Australia – QLD

Summer 2011

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

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

McKINN

Brisbane’s biggest charity ride celebrates 20 years and its biggest ever event

Spring 2011

Summer edition 2009

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

MS Life

QUEENSLAND

Giving life back

BRISSIE TO THE BAY

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

MS Life

QUEENSLAND

and dignity

us together!

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

LIFE

Winter Edition 2009

A YEAR OF EMPLOYMENT AND MS

GET PHYSICAL

How you can help the global campaign on employment and MS

LIFE

MS Australia – QLD

Questions about MS?

We’ve got the answers you’re looking for

of Queensland

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

Spring 2010

MS AWARENESS WEEK

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how you can take part

Australian of the Year WORLD MS DAY

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

MS Life

QUEENSLAND

Life at Annerley.... COMPLETED!

Giving back independence

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

! s happening all und the world!

MS CLINIC CONVERSATIONS

In depth answers to the most frequently asked MS questions

n Loraine and Bruce Milligan

Summer Edition 2009

MS Australia – QLD

MS gene discovery

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

KdajbZ (! 6j\jhi '%%+

–

Autumn 2011

2nd Annual MS National Advocates Conference

Storming Parliament House for MS

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

BRISSIE TO T

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

BREAKTHROUGH MS RESEARCH

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

ORAL TREATMENT JOINS PBS

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

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

TREVOR FARRELL: GIVING LIFE BACK

Giving back independence

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

Kate finds her dream job IFE BACK

BOB AND KAREN’S LOVE

Winter Edition 2009

MS Life

QUEENSLAND

Giving life back

and dignity

MS brought

us together!

Q&A WITH MAYOR PAUL PISASALE

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

LIFE

Winter 2010

WHAT A YEAR IT HAS BEEN FOR MS WORLDWIDE

FOR THE CAUSE

bitious program vide integrated and ed care

STORY

PwMSQ

Meet the Queenslanders supporting MS research and regional services

MS Life

MS Australia – QLD

Summer 2011

Winter 2010

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

MS Australia – QLD

WORLDWIDE

MEMBER MS LIFE – SUMMER 2013

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

Summer edition 2009

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

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

pg. 15

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

LIFE Queensland

LAND

Giving life back

Hde]^V ^h dcZ d[ FjZZchaVcYÉh ]^\]Zhi BH GZVYVi]dc [jcYgV^hZgh# I]^h nZVg! h]Z VcY ]Zg bdi]Zg \VkZ V heZX^Va egZhZciVi^dc id i]Z hX]dda VhhZbWan id ZcXdjgV\Z di]Zgh id _d^c ^c i]Z fjZhi id ÈgZVY [dg V gZVhdcÉ# >c i]^h ZmXZgei [gdb ]Zg heZZX] id i]Z eg^bVgn hX]dda hijYZcih! H]Vgdc ZmeaV^ch l]Vi ^iÉh a^`Z id a^kZ l^i] BH Ä VcY ]dl BH ]Vh ^che^gZY ]Zg id a^kZ a^[Z id i]Z [jaa# “MS has been very challenging. Not one to who are worse off. I love do my life things by halves, I will set and I look forward to everything off hiking the snowfields in that life offers. NZ, snorkelling with sharks I look at MS as a rewarding and turtles in Port Douglas, challenge and not a disability. and cruising the Coast on a It is an acceptance of whatever Harley…as a passenger. cards are dealt to you in this Then without announcement, life. It is your choice on how you I can be back as the resident are going to manage that hand. celebrity in hospital learning I guess I look at life through to walk again. different eyes these days and tend to live in the moment. I have managed this condition through positive Just before Sophia’s fifth birthday thinking, meditation, pilates, (she is 10 now), my Mum Sharon and Sophia Ball with asked swimming, diet and an her what her three birthday their puppy Millie amazing amount of love wishes were. She stated and that friendship. I had been totally she “would LOVE a violin, drug free for 7 years a opting for natural therapies. poodle puppy…but most However after much of all Grandma I would resistance, in 2001, I went love a cure for MS and on injection treatment that Mummy’s legs would which can lessen the severity work properly again”. She of relapse. received the violin and recently Millie the poochon puppy, and is still waiting for the gift of a cure. I am 41 now, lived with MS for over 12 years and I am aware of the realities of this condition, understanding that the time may come when it could worsen. Maybe through diligent management, it won’t. I am praying that it won’t. When life hands you a bag of lemons – you simply go make lemonade!”

MS CLINIC CONVERSATIONS

In depth answers to the most frequently asked MS questions

Ambassador, National Panel Horse Judge and person with MS

MS Australia – QLD

Employment Power

LOUISA ON A MISSION

“We Have MS, But It Doesn’t

Mult 286 Lock

Spring Edition 2009

LIFE

Winter 2011

9 10

Ambassadors Needed Notice of AGM

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

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

LIVING WITH MS

& taking control

An 11 year old’s idea... MS Readathon

New Record

VIRAL MS CAMPAIGN

PwMS Josie Montano helps during Queensland’s floods and cyclones

LIFE Queensland

KdajbZ (! 6j\jhi '%%+

Autumn 2011

Giving life back

Events

Employment Power

LOUISA ON A MISSION

“We Have B

QUEENSLAND

Services to

Portrait of Posterity Work of Aart Lynette Walks Again

Lisa & Sandy tell...

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

LIFE

How you can help spread the word about MS this May

Brissie to the Bay

8 9 10

Ambassadors Needed Notice of AGM

3800 CYCLIST PEDAL FOR A CURE!

MAGAZINE FOR PEOPLE

AWARENESS MONTH THIS MAY

Introducing Facebook Portrait of Posterity Work of Aart Lynette Walks Again Events An 11 year old’s idea... MS Readathon

for brissie to the bay

LIFE

Queensland

MS Australia – QLD

Winter 2011

Volume 3 Spring Edition, September 2008

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

Spring Edition 2009

2nd Annual MS National Advocates Conference

Storming Parliament House for MS

Jenni

LIFE AT ANNERLEY...

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

Vitamin D

The First Official

World MS Day

are you getting enough?

Our New MS Ambassadors LEIZA’S STORYp.3

MCKINNON HOUSE FOR RESPITE p.6

Lisa’s story of motherhood and MS

Educate, Motivate & Advocate

OUR PATRON

PREPARING FOR THE SUMMER HEAT p.7

Her Excellency Ms Penelope

LIFE

COMEBACK KID

Wensley AO

TABLET TALK

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

LET’S CRUISE

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

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

A GLOBAL MOVEMENT

COOLING REBATE

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

FEATURE STORY

P10

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

RESEARCH NEWS

QUEENSLAND’S PREMIER

Giving life b

MAGAZINE FOR PEOPLE

MS Life

LIVING WITH MS

Winter 2011

MCKINNON HOUSE FOR RESPITE p.6

Lisa’s story of motherhood and MS

Educate, Motivate & Advocate

OUR PATRON

PREPARING FOR THE SUMMER HEAT p.7

Her Excellency Ms Penelope

LIFE

COMEBACK KID

Wensley AO

TABLET TALK

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

LET’S CRUISE

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

Debbie strives despite MS

MOONLIGHT WALK

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

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

A GLOBAL MOVEMENT

QUEENSLAND

QUEENSLAND’S PREMIER

Giving life back

MAGAZINE FOR PEOPLE

Services to

support you

How a young mum won’t

Autumn 2011

New Record

let MS hold her back EMPLOYMENT AND

pg. 8

Nominate your MS Hero

MS Life

Working with MS Workshops

pg. 12

MS AWARENESS WEEK

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

pg. 15

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

LIFE

MS Australia – QLD

bri

MS AND SES

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

Services to

support you

RESEARCH NEWS

P15

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

MS Australia – QLD

& taking control

for

3800 CYCLIST PEDAL

VIRAL MS CAMPAIGN

PwMS Josie Montano helps during Queensland’s floods and cyclones

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

...

How a young mum won’t pg. 8

Nominate your MS Hero

Spring Edition 2009

LIFE

KdajbZ (! 6j\jhi '%%+

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

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

let MS hold her back EMPLOYMENT AND

pg. 8

Working with MS Workshops

pg. 12

worldMSday

Activities happening all around the world!

26 MAY 2010

MS Awareness Week

part

Life at Annerley

In depth answers to the most frequently asked MS questions

Ambassador, National Panel Horse Judge and person with MS

Find out how you can take

26 May - 4 June

The offic

WORLD MS DAY

GET PHYSICAL

How you can help the global campaign on employment and MS

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

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

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

Jonathan Loraine and Bruce

Milligan

Summer Edition 2009

MS Australia – QLD

QUEENSLAND

Summer edition 2009

“MS has been very challenging. Not one to who are worse off. I love do my life things by halves, I will set and I look forward to everything off hiking the snowfields in that life offers. NZ, snorkelling with sharks I look at MS as a rewarding and turtles in Port Douglas, challenge and not a disability. and cruising the Coast on a It is an acceptance of whatever Harley…as a passenger. cards are dealt to you in this Then without announcement, life. It is your choice on how you I can be back as the resident are going to manage that hand. celebrity in hospital learning I guess I look at life through to walk again. different eyes these days and tend to live in the moment. I have managed this condition through positive Just before Sophia’s fifth birthday thinking, meditation, pilates, (she is 10 now), my Mum Sharon and Sophia Ball with asked swimming, diet and an her what her three birthday their puppy Millie amazing amount of love wishes were. She stated and that friendship. I had been totally she “would LOVE a violin, drug free for 7 years a opting for natural therapies. poodle puppy…but most However after much of all Grandma I would resistance, in 2001, I went love a cure for MS and on injection treatment that Mummy’s legs would which can lessen the severity work properly again”. She of relapse. received the violin and recently Millie the poochon I was totally needle phobic puppy, and is still and now I inject myself waiting for the gift of a cure. daily: I am up to about 2000 injections so far! I have learnt to walk from scratch I am 41 now, lived with MS for over 12 years about 16 times and have been blind twice. and I am aware of the realities of this condition, understanding that the time may come when it MS has been a gift to me as it has given me a could worsen. Maybe through sense of urgency about diligent management, life, encouraging me not it won’t. I am praying that to procrastinate about what it won’t. I would like to do one day. I definitely do not want When life hands you a bag pity…there are many people of lemons – you simply go make lemonade!”

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

MS Life Spring 2010

LIFE AT ANNERLEY...

MS gene discovery

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

TREVOR FARRELL: GIVING LIFE BACK

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

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

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

LIFE

Winter Edition 2009

Giving life back

QUEENSLAND

and dignity

BOB AND KAREN’S LOVE

Jonathan Loraine and Bruce

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

who are worse off. I love my life and I look forward to everything that life offers.

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

MS Life Spring 2010

MS Australia – QLD

Questions about MS?

We’ve got the answers you’re looking for

MS gene discovery BREAKTHROUGH MS RESEARCH

ORAL TREATMENT JOINS PBS

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

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

TREVOR FARRELL: GIVING LIFE BACK We celebrate the end of an era as Executive Director Trevor Farrell prepares to retire after nearly 30 years

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

LIFE

Winter Edition 2009

MS Australia – QLD

Winter 2010

A YEAR OF EMPLOYMENT AND MS

Milligan

Summer Edition 2009

MS Australia – QLD

QUEENSLAND

LIFE AT ANNERLEY...

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

STORY

part

The official launch

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

Spring 2011

I look at MS as a rewarding challenge and not a disability. It is an acceptance of whatever cards are dealt to you in this Then without announcement, life. It is your choice on how you I can be back as the resident are going to manage that hand. celebrity in hospital learning I guess I look at life through to walk again. different eyes these days and tend to live in the moment. I have managed this condition through positive Just before Sophia’s fifth birthday thinking, meditation, pilates, (she is 10 now), my Mum Sharon and Sophia Ball with asked swimming, diet and an her what her three birthday their puppy Millie amazing amount of love wishes were. She stated and that friendship. I had been totally she “would LOVE a violin, drug free for 7 years a opting for natural therapies. poodle puppy…but most However after much of all Grandma I would resistance, in 2001, I went love a cure for MS and on injection treatment that Mummy’s legs would which can lessen the severity work properly again”. She of relapse. received the violin and recently Millie the poochon I was totally needle phobic puppy, and is still and now I inject myself waiting for the gift of a cure. daily: I am up to about 2000 injections so far! I have learnt to walk from scratch I am 41 now, lived with MS for over 12 years about 16 times and have been blind twice. and I am aware of the realities of this condition, understanding that the time may come when it MS has been a gift to me as it has given me a could worsen. Maybe through sense of urgency about diligent management, life, encouraging me not it won’t. I am praying that to procrastinate about what it won’t. I would like to do one day. I definitely do not want When life hands you a bag pity…there are many people of lemons – you simply go make lemonade!”

GET PHYSICAL

How you can help the global campaign on employment and MS

MS Life

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

Life at Annerley.... COMPLETED!

Giving back independence

Australian of the Year WORLD MS DAY

rse Judge

LIFE

QUEENSLAND Summer edition 2009

MS brought

us together!

MS Life Summer 2011

Find out how you can take

MS CLINIC CONVERSATIONS

In depth answers to the most frequently asked MS questions

and person with MS

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

Activities happening all around the world!

Storming Parliament House for MS

MS Australia – QLD

We’ve got the answers you’re looking for

WHAT A YEAR IT HAS BEEN FOR MS WORLDWIDE

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

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2nd Annual MS National Advocates Conference

Questions about MS?

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

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

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MS Australia – QLD

Autumn 2011

Giving life back

JOIN THE GLOBAL MOVEMENT!

MS CLINIC CONVERSATIONS

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

pg. 15

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

LIFE Queensland

QUEENSLAND

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Employment Power

LOUISA ON A MISSION

S, ’t Have Us!”

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

LIFE Queensland

Autumn 2010

QUEENSLAND Giving life back

of Queensland

P10

help spread the word about MS this May

2 3 4 5 6 7

LOUISA ON A MISSION

“We Have MS, But It Doesn’t Have Us!”

Giving life back

Multiple Sclerosis Society

FEATURE STORY

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

THIS ISSUE

& taking control

Lisa & Sandy tell...

QUEENSLAND

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

Winter 2011

3 4 5 6 7 8 9 10 11 12

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

LIFE

A YEAR OF EMPLOYMENT AND MS

COOLING REBATE

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

MS Life

LIVING WITH MS

Volume 3 Spring Edition, September 2008

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

3800 CYCLIST PEDAL FOR A CURE!

Jenni

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

Autumn Ed

LIFE

Queensland

MS Australia – QLD

THIS ISSUE CEO’s Desk

are you getting enough?

Our New MS Ambassadors LEIZA’S STORYp.3

P15

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

AUTUMN 2012

QUEENSLAND Volume 3 Spring Edition, September 2008

for brissie to the bay

Vitamin D

The First Official

World MS Day

Debbie strives despite MS

MOONLIGHT WALK

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

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

Autum

LIFE

Queensland

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

Spring Edition 2009

2nd Annual MS National Advocates Conference

Storming Parliament House for MS

Giving life back

QUEENSLAND

Life at Annerley.... COMPLETED!

Giving back independence

and dignity

Kate finds her dream job

MS brought

us together!

BOB AND KAREN’S LOVE

MS Life Summer 2011

I DEBATE

GIVING LIFE BACK

organisations are proceeding with caution on new treatments

STORY

MS Australia – QLD

FOR THE CAUSE

The ambitious program to provide integrated and dignified care

PwMSQ

Meet the Queenslanders supporting MS research and regional services

MS Life Winter 2010

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

MS Australia – QLD

WHAT A YEAR IT HAS BEEN FOR MS WORLDWIDE

The First Official

World MS Day

Vitamin D

are you getting enough?

Our New MS Ambassadors LEIZA’S STORYp.3

MCKINNON HOUSE FOR RESPITE p.6

PREPARING FOR THE SUMMER HEAT p.7

OUR PATRON

Her Excellency Ms Penelope

Educate, Motivate & Advocate

Lisa’s story of motherhood and MS COMEBACK KID

Wensley AO

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

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

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

Are you a member of the

Are you a member of MS Queensland? Membership with us – just $22 a year – enables you to have your say about MS Queensland’s focus and direction and assists us in providing you with information and education about MS and leading edge research. The good news is if you become a member before March 2013 you will save $11 off your annual membership. Membership from 31 March 2013 will increase to $33 a year. So become a member of MS Queensland now and SAVE! Simply call 07 3840 0888 or visit www.msqld.org/get-involved/become-a-member today!

HAVE YOUR SAY!

Help support the MS Society and it’s good work!

The First Official

World MS Day

Debbie strives despite MS

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

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

MEMBERSHIP: JOIN US

COOLING REBATE

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

FEATURE STORY

P10

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

RESEARCH NEWS

P15

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

Vitamin D

are you getting enough?

Our New MS Ambassadors LEIZA’S STORYp.3

MCKINNON HOUSE FOR RESPITE p.6

PREPARING FOR THE SUMMER HEAT p.7

OUR PATRON

Her Excellency Ms Penelope

Educate, Motivate & Advocate

Lisa’s story of motherhood and MS COMEBACK KID

Wensley AO

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

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

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

Debbie strives despite MS

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

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

COOLING REBATE

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

FEATURE STORY

P10

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

RESEARCH NEWS

P15

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

TODAY

MS Society?

Membership with us, which is just assists us in providing informatio $22 a year, n MS and leading edge MS researchand education about to find a cure for multiple sclerosis. This includes the informatio n you receive through publications such as MS Life, MS Insight and our Online Resource Centre on our website. We regularly receive very positive feedback about the information content of our flagship client-focused magazine, MS Life. We are committe to provide this valuable informatio d to continuing n resource to anyone who has an interest in MS and as such we do not restrict its circulation to MS Australia – QLD members only. But this comes at we need your support. It currentlya substantial cost and costs the Society $30,000 per year to produce and distribute MS Life and current members hip subscriptions provide $12,000 per year - a significant shortfall each year. So if you value the publicatio ns and services MS Australia - QLD provides then please show your support by joining the Society today. For a fee of just $22 you can join us for a year, consider becoming a Life Member or you might for just $220 to avoid worrying about paying your membership ever again! The strength of our Society is in its active and committed members and we would welcome your contribution to our vital work. As a financial member you’ll also to have your say on the exciting have the opportunity future plans of our MS Society at the Annual General Meeting (AGM) in November. To become a member, simply complete the form overleaf and return it to the MS Society as soon as possible. On behalf of all Queensla nders living with MS, we look forward to your membership support for a world free from MS and its devastating impact.

Lincoln Hopper, CEO

MS1077_Membership

Flyer_Art02_sd.indd

28/05/12 8:55 PM

nominations

on MS were held across Queensland

26% of staff have been employed for longer than 6 years

people held

community fundraisers

The MS Queensland

people attended our

information/education sessions about MS

was approved in June

550

We employ

125

followers on

Twitter

values development workshops

for MS

2020

641

137K

Our Review

MS Heroes

Facebook

staff participated in our

to clients by

our regional team

educational events

43 154 60

6,107 2,400 RSC visits likes on

in-kind value provided by our volunteers

staff

How we performed

20K

increase in revenue from

fundraising and marketing

of supporting people with MS

$1.5M

Total revenue was up

10.3%

raised by our fundraising events

on 2010–11

events were held

15K

2,297 enquiries were made to our

YouTube views of MS Stories

Info Line

35K 79% 4,922 visits to our website

of staff were

employed on a full-time basis

MS car lotteries held

spent on

and distributed

17.1%

$6,719,000

MS service delivery

MS resources copies were accessed

provided by our Annerley Apartments

physiotherapy sessions were delivered

MS Queensland contributed

$259,314 to MS research

$7.7M net assets at 30 June 2012

456

332 volunteers

mentions in the media

are registered with us

Client services expenditure increased by

5.3%

2,190 16 at Granston Lodge provided for respite

Long-term strategies

3,330 $2.3 people with MS live in Queensland

7,663 100 hours

were given by volunteers and students

achieved in publicity value

73%

staffattended and clients the first NDIS rally

of staff are

female

MS QUEENSLAND | 2011–12 ANNUAL REPORT

273 McKinnon House

bed days provided at

2,044

fundraising

spent on staff

development

bed days

$88K

years

27% of staff are

male

MS QUEENSLAND | 2011–12 ANNUAL REPORT

My Story

Strategic Evolution

Jackie Richards From the dream of being a police officer to finding her passion working with animals, Jackie has been through a whirlwind of emotions since being diagnosed with MS at the young age of just 22.

At the time she was looking forward to a career in the Queensland Police Service, had just graduated from a Diploma in Justice, was juggling full-time work and had an active social life as any 21 year old would. “The diagnosis came as a complete shock - I knew absolutely nothing about MS and thought it was something that mainly affected older people. I was scared my face and my eyes were going to be like that forever.”

The strategic review MS Queensland has undertaken this year clearly defines our aspirations and defines our responsibilities in our quest to eradicate MS. We will never give up on our vision of a world free from MS and its devastating impact.”

As she regained sight, Jackie was determined to not let MS ‘win’ and she continued to work and study. “I wanted to prove to myself that this disease would not control my life and that I could still work just as hard as anyone else.” And she did, moving jobs to work in Human Resources (HR) for a telecommunications company for another year and joining MS Queensland’s volunteer program. But there is more to Jackie. She has volunteered for the RSPCA for years, which is where her true passion lies. This year Jackie made the brave move to quit her well-paying job to work as a dog groomer at ‘Passion for Pets’, a boutique grooming salon around the corner from her home. The move from the office to the dog bath has been interesting but for Jackie, the “best thing” she’s ever done. Jackie now baths and dries puppies and dogs all day and while she becomes quite fatigued from the long days and physical work, she said it’s all worth it. She’s also gone back to the books and is studying a Certificate IV in Companion Animal Services via correspondence in light of her next life goal; to become a Veterinary Nurse. And the MS? At times she suffers from dizziness, eyesight problems, extreme heat sensitivity and fatigue. But it doesn’t stop her every day.

Strategic Evolution

Jackie was busy planning her 22nd birthday when she suffered partial facial paralysis: “I was at work one day and the left side of my face went numb and became paralysed; my lips, my eye all dropped.” She underwent a series of tests before a neurologist delivered the news that she had multiple sclerosis.

Mr Jonathan Loraine, Chairman MS Queensland.

“I first received a visit from MS Queensland’s nurse Bernie to learn how to inject which was hard for me. But MS Queensland is great if you need and want support with your MS. I decided to become an MS volunteer to do something that was rewarding and lots of fun – and it allows me to see from afar the different stages of MS and how it affects people differently. It’s a huge eye opener. ”

Contents 20 | Our focus 20 | Our strategic objectives 21 | Our new strategic plan 22 | Our new vision, mission and values

“With the right attitude, I feel having MS pushes me to work hard in everything I do. Living in uncertainty about my future is definitely part of MS, but I won’t stop living my life just because I have it.”

23 | Explaining our organisational values 24 | Measuring our performance against the new plan 26 | Looking ahead to 2020

MS QUEENSLAND | 2011–12 ANNUAL REPORT

MS Queensland is committed to meet and exceed community expectations and standards, through its management and control of environmental issues. We achieve this through the ongoing development of systems, adoption of new technology, and dissemination of information as appropriate to all employees, sub-contractors and contractors.

MS Queensland’s environmental commitment

Environmental policy and procedures

The 2020 Strategic Plan records MS Queensland’s commitment to minimising our environmental footprint. This commitment has been evident in 2011–12 through the following initiatives:

During 2011–12 MS Queensland developed a draft environmental policy and procedures. Our commitment to sustainability will be demonstrated by the:

1 2

Integration of environmental requirements within all aspects of MS Queensland operations.

3 4 5 6 44

MS QUEENSLAND | 2011–12 ANNUAL REPORT

The use of water tanks. Installation of solar panels to all buildings on the Dutton Park site, Annerley site and McKinnon House respite accommodation on the Gold Coast. A default process to double-sided printing across the organisation. Implementation of energy efficient printers and copiers throughout the organisation and commencement of a program to update all computer equipment. An active recycling program to reduce paper and waste. Commencement of a program to replace our current motor vehicle fleet with more fuel efficient vehicles.

Identification, assessment and monitoring of environmental requirements. Establishment, documentation and maintenance of procedures for the management of environmental safeguards within the workplace. Dissemination of environmental information where appropriate. Reporting of environmental incidents and the immediate and effective responses to such incidents. Provision of appropriate personal protective equipment along with training in its use for timely deployment in the event of incident. We will achieve these goals in 2012–13 through continued compliance with all relevant environmental legislation and in conjunction with the ongoing development, implementation, monitoring and review of environmental management systems.

MS LIFE – SUMMER 2013

Sustainability and our social impact

Our Performance

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

BLE

Strategic Plan

GIVING LIFE BACK

Our 2011–12 report features a number of ‘MS Stories’ told by people living with MS in Queensland. Each MS Story talks about how each person felt when they were diagnosed with MS, how their life has changed, and how they now live positively with MS. An electronic version of the report can be downloaded from our website www.msqld.org.au

million

OF QUEENSLAND

N O W avaILa

We are pleased to share with our MS Life readers that our 2011–12 MS Queensland Annual Report is now available. Last year’s report received a number of industry awards and this year’s report is better than ever.

have been set for 2020

MULTIPLE SCLEROSIS SOCIETY

MS Queensland 2011–12 Annual Report

ANNUAL REPORT bed days

2011–12 ANNUAL REPORT

Picture a world free from Multiple Sclerosis

Rehab Day Therapy Unit

at Greenslopes The Rehabilitation Day Therapy Unit Neurological Rehabilitation Program at Greenslopes Hospital can provide assistance in managing MS and other neurological conditions by maximising independence and improving quality of life for patients. The program is for both veteran and private patients, and consists of both individual and group therapy sessions supported by Allied Health professionals. • The Physiotherapist can help by devising tailored exercise programs, designed to improve or maintain strength, mobility, balance, and coordination. • The Occupational Therapist can analyse daily routines and offer advice about certain activities that can be modified to better

suit a person’s specific needs or circumstances. They may also recommend specific adaptations for the home or workplace. • The Speech Therapist can improve a person’s ability to swallow or speak. • The Dietician can devise a diet that best suits a person’s specific needs and circumstances. A referral is required from your General Practitioner (GP) or specialist to a Greenslopes Private Hospital Geriatrician or Rehabilitation Specialist. For more information, please contact the Rehabilitation Liaison Nurse on 07 3394 7418. MS Queensland is always grateful to external service providers who actively

support people with MS. It does need to be noted that there will be costs associated with attending a program through a private service provider. You should discuss these costs with your GP and private health insurer. The MS Specialist Physiotherapy Team at MS Queensland and your RSC are always available to discuss your therapy needs and match your needs with appropriate services.

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MS LIFE – SUMMER 2013

www.abilityinmotion.com.au admin@abilityinmotion.com.au

PHONE 1800 994 408

Fax 07 5335 1604

A.I.M - to brIng InnovAtIon to QueenslAnders

KELLIE’S MS hasn’t stopped her working TWO yEaRS ON kELLIE cARPENTER WAS A bUSY WORkING MUM WHEN SHE WAS DIAGNOSED WITH MULTIPLE ScLEROSIS IN 1999, AND NEVER IMAGINED THE MYSTERY DISEASE WOULD QUIckLY PUT AN END TO HER cAREER.

Thankfully, her condition gradually improved over the next decade and she was able to walk unaided. When her youngest of four children started school a few years ago, she was determined to re-enter the workforce.

consultant for people with a range of disabilities – having a chronic illness like MS myself does help in understanding my clients and their needs,” Kellie said. Throughout her MS journey, Kellie has used the support services of MS Queensland – the only service provider in Queensland that directly supports people living with multiple sclerosis and their families.

ter

what a person with MS is or looks like is often incorrect. “A person who is very physically disabled – but for most people with MS a lot of symptoms are invisible,” she said. MS is a part of who I am, I like to be recognised for having a disability and I am proud about what I’ve achieved. Two years on from heading back into the workplace I’m exactly where I want to be!”

“I found myself wanting a casual job of some sort, but I’d been out of work for so long that I didn’t know where to start,” Kellie, now 43, said.

MS Queensland’s Regional Service Coordinator for the Sunshine Coast Tasman Saywell said Kellie’s story is a great example of how important remaining in employment is for people with chronic illnesses like MS.

“I was referred to Disability Employment Services and was hired as a casual office cleaner/admin, and soon after asked to assist with job seeking research and post placement support for other unemployed clients followed by working six months in Brisbane.”

“About 80 per cent of people with MS will lose their job within 10 years of diagnosis, often in their 30s or 40s, without adequate savings or family support, and with a very real risk of social isolation,” TRIALS SHOW ENcOURAGING RESULTS Tasman said.

Kellie’s enthusiasm won over her bosses, and she completed a Certificate IV in Community Services and started a Diploma in Mental Health, with the dream of becoming a case manager specialising in disability employment.

“With a bit of flexibility Alemtuzumab (Lemtrada) is a drug under and change in investigation for treatment of relapsing remitting MS. the workplace, Recently two long awaited Phase III clinical trials looked a number of at the evidence for the use of alemtuzumab in relapsing people with MS remitting MS and its safety and performance against like Kellie can subcutaneous interferon beta 1a. The studies both showed return to or that alemtuzumab was more effective than interferon beta maintain their 1a on reduction of relapse rate and sustained accumulation employment of disability. The drug has now been submitted for evaluation with very few to a number of regulatory authorities internationally however workplace these processes can take in the region of 18 months to two modifications.” years. MS Queensland welcomes the development of new treatment options for people with MS that have undergone Kellie said the rigorous clinical testing. For more information on these trials community’s visit the MS Research Australia website www.msra.org.au perception of

Earlier this year that dream became a reality, and Kellie gained employment working for STEPS Group Australia: a not-for-profit community organisation focused on empowering individuals so they can become active and contribute to their communities. “My role with STEPS is an employment

aLEMTuzuMaB

MS LIFE – SUMMER 2013

At the time, she was managing a successful professional cleaning company on the Sunshine Coast, but within six months Kellie’s symptoms had escalated and she relied on a scooter to get around.

Kellie Carpen

MS LIFE – WINTER 2012

Carmel’s letter to her loCal member – 22nd July 2012

Dear Nicole RE: WATERTON ST. ANNERLEY

Carmel Co

If YOU LIVE WITH MS, YOU SHOULD NOT UNDERESTIMATE THE IMPAcT SELf-ADVOcAcY cAN HAVE ON YOUR WELL-bEING, SELf-cONfIDENcE, AND PRIDE. Here’s how a lady living with MS worked with her local member for Brisbane City Council and achieved a positive outcome.

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

Carmel Cock was diagnosed with primary progressive MS in 1998 and over the years has experienced a gradual loss of mobility in her arms and legs. She now lives in our Annerley Apartments and remains engaged with her local community, taking regular outings to meet friends and family.

Within three days of sending the letter, Carmel had a reply from the Member for Tennyson Nicole Johnstone who assured her that the footpath would be fixed as soon as possible. This was a very positive, timely outcome for Carmel and the residents at our accommodation facility at Annerley, and just one of many that people living with MS have achieved through selfadvocating in their community.

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

Like Carmel you too can bring about change in your community. Her message to others in a similar position is to, “be positive and do what you feel is right.” For more information on how to selfadvocate, please contact our Advocacy Manager Natalie Walsh on 07 3840 0823 or natalie.walsh@msqld.org.au

Further to a telephone conversation with a staff member from your office, I am writing to you on behalf of residents living and using the above mentioned Street to access shops and Doctors Surgeries that are in close proximity. At this point, I would like to inform you that we are all living in WHEELCHAIRS and with the atrocious condition of the footpath we are finding it difficult to get out in the community. I would like to take some time to describe it to you. • It is laid with concrete with what (being a layperson) I would say is separated by rubber strips. The concrete has lifted causing a major rise of at least two centimetres. This occurs all the way along the street. • There are numerous pot holes. • The concrete is broken outside a future construction site. • The path in a number of places is slanted towards the road, giving the driver and carers the feeling that their chairs are going to tip over. • The ramps to enable us to cross roads are too steep – this has caused panic with the driver being afraid of not getting across the road before traffic comes in any direction. • The driveways are also to steep and some are raised a minimum of three centimetres from the road. As you have read this footpath is in need of repair. These may only seem like minor problems to most but they are a major worry for people with a disability and their carers. I would like to invite you and some staff members to accompany myself to walk from the corner of Ipswich Road to Bower Street and afterwards come back to our inclusive living centre at number 33. Hoping to hear from you soon. Sincerely, Carmel Cock

MS LIFE – SUMMER 2013

SELF advOCaCy. THE ROAD TO SUccESS

quESTIONS WITH TIM

This edition’s article is going to cover some of the more ‘difficult’ questions we get through from our clients – and by this I mean questions about MS symptoms that are difficult to ask – symptoms that people may wish to hide, or even are embarrassed to ask about. Getting the right information and support can and does minimise the impact of most symptoms people with MS have to deal with. continence – bladder and bowel changes. Too often people with MS put up with changes in bladder and bowel function. Our female clients, especially those who have had children, assume it is normal to have ‘changes’. Often for men it is even harder to talk about changes. Most continence issues can be improved and the earlier they are identified the better. You may come across terms like frequency – going too often, urgency – going RIGHT now, “accidents”, and incomplete voiding – feeling like the job was only “half done.” There is much that can be done to improve these symptoms.

MS LIFE – SUMMER 2013

cognition – changes in memory, concentration, planning and problem solving are probably the most common concerns people with MS report. Identifying and acknowledging that there are some changes going on gives you the chance to work on the strengths to minimise the weaknesses. This can affect work and family life – strong communication and if necessary professional assessment is really important. Sexual changes – these can go hand in hand with continence and cognition (and mood and fatigue) issues, but people with MS can also struggle with sensory and physical symptoms that can impact on their enjoyment of intimacy. In some instances fixing another symptom can

improve enjoyment and confidence, but again strong communication and expert counselling can be vital in supporting relationships. Double vision – this is a relatively common symptom that people with MS can experience. In “medical” terms it is a fairly mild symptom – unless you are living with it. Those that have experienced double vision will know it makes working near impossible, reading or just watching television very unpleasant, driving unsafe and even walking around home can be a hazard. In most cases it will improve on its own or with steroid treatment if warranted – but often a simple eye patch (you can have “talk like a pirate” week!) will reduce the impact. Occasionally glasses with prisms may help if the problem persists but this can be expensive as prescriptions may need to be changed. As you all know, everyone experiences MS differently. Getting the right information – relevant to you – gives you the ammunition to look at options for managing any symptom of MS. Many symptoms will come and go – but there are very few symptoms that a person should ‘just have to live with’ if it is identified early.

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 1 February 2012.

WHAT DO YOU kNOW AbOUT THE NATIONAL DISAbILITY INSURANcE ScHEME – THE NDIS?

The National Disability Insurance Scheme is for all Australians in the event that they are born with or incur a disability. It is an investment for individuals so their needs will be provided for. We have bi-partisan support from all levels of Government, but no legislated funding and Queensland is yet to run a trial site. The NDIS has been spoken of a lot and there is indeed much information to understand, here is some quick information regarding what it will mean for you. The NDIS is a safety net for you and every other Australian, if they are born with, develop, or acquire a permanent disability. The fundamental change the NDIS will bring is that support will no longer be rationed and a wider range of services to meet your needs will be available regardless of where you live. The envisaged plan to provide lifelong solutions for how the NDIS will work: • A person with disability and their family will discuss their goals and aspirations • A goal-based plan that suits you will be worked out with your Local Agency Planner • You will decide on the support you need to achieve your goals • Y ou will work out the cost of You supplying the support you need • Y ou will choose who provides and You delivers your support; and • Your plan can change if your needs change. As you know Australia is moving closer to our goal of achieving a NDIS. Cofunded launches have been established between Federal Government and States (except Queensland) but it does not have a full, national funding plan. We need a $5 billion funding plan from ALP and LNP to make the NDIS happen.

advOCaCy

WITH NATALIE

TAxI SUbSIDY ScHEME UPDATE

WE APPREcIATE YOUR SUPPORT AND TIME TAkEN TO HELP MAkE A DIffERENcE WITH NATALIE fOR PEOPLE WITH MS.

Wendy Lovelace, our MS Hero, Ambassador and advocate spoke and encouraged everyone to continue your communication with Government of how important the NDIS is to you personally. By continuing to pledge support via the Every Australian Counts campaign and meeting with politicians you can help make sure the NDIS becomes a reality! Unfortunately our Federal Member for Griffith, Kevin Rudd was unable to attend; however warm words of support were shared from Wendy Bourne from his office:

Mid-September brought some not so welcome news regarding the capping of the Queensland Taxi Subsidy Scheme (TSS) at $400. Thank you to so many of you who have been very proactive, contacting your member of Parliament to share what the capping of this valuable subsidy will mean to your life, transportation, employment, volunteering and day-to-day activities.

Please contact me with any queries you may have at natalie.walsh@msqld.org.au or phone 07 3840 0823.

Our CEO Lincoln Hopper has been chosen as a participant on the Expert Advisory Panel for the Taxi Subsidy Scheme Review Panel representing people living with MS together with other representatives from disability and community groups, the taxi industry and relevant government agencies to provide valuable insight on behalf of our clients. As a result of the Taxi Subsidy Survey we undertook, some of the interesting statistics included: • 71.2% of people would be significantly or greatly impacted if the TSS was capped at $400 • Over 25% of people use taxis up to 10 times a week • 50% of people spend between $10 – $30 /week • 22% 22% of people spend $40 or more 45.4% of people would either • 45.4% have to ask friends, family or carer to assist with transportation; taking away their independence and in some cases employment 44% of people have no other • 44% options for transportation.

Natalie, Advocacy Manager

The next step of the Review is now taking place with further consultation and input being sought.

represent Kevin. I am delighted to be here today to in our community As you know, one in five people these people have a disability and many of support they and es struggle to get the servic deserve... n fortunate to As local member, Kevin has bee groups across meet with a number of disability cerns, and their the electorate to hear their con al Disability voices of support for a Nation Insurance Scheme. nce Scheme is such The National Disability Insura sing the concerns an important first step in addres

anisations of these families, community org and individuals. not only We need to ensure that we are in where putting the funding and reform ple with peo it is needed, but also giving treated are y disability a voice in how the orm ref and making them part of the process... t for the Please continue in your suppor to the NDIS, if you haven’t signed up make – site web s unt Co n lia Every Austra it vis d nte sure you are cou au www.everyaustraliancounts.com.

We must ensure that the NDIS becomes a reality for all Australians, please continue conversations with your Federal Member of Government and continue to add your support via the Every Australian Counts campaign www.everyaustraliancounts.com.au. It is a busy time in the Advocacy space. As you can see we need your voice to make the difference and to have our voice heard.

MS LIFE – SUMMER 2013

Thank you to those who joined us at the second MS community DisabiliTEA on Friday 26 October at Gair Park, Dutton Park. Over 60 community members, including a representative from Kevin Rudd’s electoral office, came together as part of a nationwide tea party with a serious message to Australia’s political leaders that we need to make the NDIS real!

SUPPORT GROUP

celebrates 20 YEARS!

The Toowoomba & District MS Support Group recently celebrated 20 years of providing support to people with MS with a luncheon party. Lincoln Hopper, CEO of MS Queensland and Jenni Saunders, the Chairperson for People with MS Support Groups as well as several past Presidents of the MS support group attended the day to help the group celebrate. It was a fitting celebration for attaining 20 years of service and the group hopes for another 20 successful years “unless a cure for MS is found and there is no need for us to exist of course.” The Toowoomba Group President Darryl said “I would be only too happy to see the group disbanded if a cure was to be found.”

The MS Support Group in Toowoomba was established in 1992 by people with MS, helping anyone with MS and allied neurological disorders. The group meetings are held in the MS Theatre and Dance Hall at the USQ Grounds, Steele Rudd Drive (off Baker St) in Toowoomba on the third Wednesday of the month at 10:30am. If your MS support group has celebrated a significant achievement or has news, stories and information to share please email us at MS Life via mslife@msqld.org.au To find your nearest MS support group please contact our Info Line on 1800 177 591.

WORLd-FIRST WEbSITE

MS LIFE – SUMMER 2013

bRINGS INfO TO PEOPLE WITH MS

A world-first website aimed at helping people living with MS manage their illness www.makingsenseofmsresearch. org.au was recently launched in Australia. The website is a great health information tool for people with MS, their family members and carers.

Judy James

The good news is this website is a first of its kind for the MS community. This kind of information is normally only available to doctors, so to have it accessible to people living with the disease every day is a great step forward!

Happy 2

0 years

you might ask your doctor. Put simply, it’s a really useful resource for people with MS!

For more information please browse the website www.makingsenseofmsresearch.org.au What sets this website apart from other Funded by MS Research Australia and MS similar web resources is that it has distilled and tell us what you think by emailing Australia - ACT/NSW/VIC, the website the scientific language of clinical trials into mslife@msqld.org.au uses summaries of scientifically rigorous something everyone can understand. It To find a course near you visit our website, Cochrane Reviews to create a place also has different levels of detail about www.msqld.org.au that people affected with MS can go to each treatment, a section that helps you seek unbiased, first-class information on understand how MS research relates medications and treatments. specifically to you and a list of questions

WWW.MSQLD.ORG

RESOURcES PEOPLE with The Online Resource Centre www.msqld.org.au helps you access the latest information about MS from around the world. There are two sections – ‘General information on MS’ and ‘For health professionals’ that offer resources on working with MS, fatigue, sexuality, complementary therapies and motherhood just to name a few. Please find below a review of one of the most downloaded resources from our website. If there is information you need not available through the Online Resource Centre please email us at info@msqld.org.au or phone our Info Line on 1800 177 591.

MS and your emotions: chapter 3 The psychological impact of MS on a person’s life is often an invisible symptom of the disease. Emotional mood swings are common and may be a reaction to the MS, or a result of lesions in specific parts of the brain. The person with MS may be reacting normally to the uncertainty and frustrations of MS and continual re-adjustments are necessary. MS can magnify a person’s normal emotions, and it can be the cause of loss of normal emotional control. An understanding of MS and how it affects moods is important in all relationships, be they with family, friends, or colleagues. Chapter 3 of this online book, “Mood and Personality Changes Associated with MS,” gives insight and practical strategies for managing many common emotions. These emotions include: anger, anxiety and stress, denial, dependency, depression, emotional liability, euphoria, fear, guilt, and possible personality changes, such as insensitivity to others, loss of insight and evaluation, rigidity. This chapter is just one of a larger online book titled “Understanding and Managing Cognitive, Emotional and Behavioural Changes in Multiple Sclerosis”, by Christine Leech, Senior Occupational Therapist Multiple Sclerosis Society of Queensland, published in June 2005. Download a copy today at www.msqld.org.au/ phocadownload/cognitionEmotionbook_updated%20 ook_updated%20 2005.pdf or contact our Info Line on 1800 177 591 for a version to be emailed to you.

fROM THE cHAIRPERSON Of pwMS SUPPORT GROUPS, JENNI

It never seems to quieten down at MS Queensland, but I hope everyone is looking forward to a well-deserved rest and recharge over the Christmas break. The team at MS Queensland have achieved amazing results on our behalf, hosting three major events in October and November with the fabulous MS Moonlight Walk reaching the fundraising goal of $300,000 and at two regional MS Swimathons – at Toowoomba and Jindalee respectively, the MS community has been out in full force! To those who have been involved in MS Queensland events – thank you! Your support and community spirit, and of course fundraising is greatly admired and to be commended. In 2013 things will not be slowing down. More fabulous events that you can get involved in next year are on the back page of this edition of MS Life. If there is an event coming to your part of Queensland I would highly recommend you get involved. It is wonderful to know we have such a strong community spirit and this was shown again at MS Queensland’s second DisabiliTEA. Progress for the NDIS in Queensland may have seemed to have slowed down – this is not the case. If you haven’t already, please read the ‘What do you know about the NDIS?’ article on page 20. This could be the most important piece of information you read today – how a National Disability Insurance Scheme can positively change the way we live through access to essential care, support, therapy and equipment and the promotion of early intervention. We must do everything we can to ensure together we achieve a National Disability Insurance Scheme so please get involved in the campaign. To you and your loved ones, on behalf of all People with MS Support Groups across Queensland, we wish you a very Merry Christmas and a safe and happy New Year and look forward to seeing you in 2013. Jenni PwMS Support Groups Chairperson

MS LIFE – SUMMER 2013

1 – 31 MaRCh

1 MaRCh – 30 aPRIL

2 MaRCh

9 MaRCh

Host a dinner party to help fight MS

MS Heroes Awards nomination period

MS Swimathon Gold Coast

MS Swimathon Redcliffe

www.bigDinnerParty.com.au

www.msqld.org.au

www.MSswimathon.com.au

aPRIL

27 aPRIL

May

Date TBC

MS Swimathon Sunshine Coast

MS Swimathon Cairns

MS Swimathon Townsville

MS Swimathon Rockhampton

www.MSswimathon.com.au

1 – 31 May

29 May

23 JuNE

26 JuNE – 3 JuLy

MS Awareness Month

World MS Day: Young people and MS

MS Brissie to the Bay bike ride

www.kissGoodbyetoMS.org

www.WorldMSDay.org

www.brissietothebay.com.au

30 MAY 2012

MS Cycle de France bike ride

www.MScycleDefrance. rance. 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 Multiple Sclerosis Society of Queensland (MS Australia – QLD). MS Australia – QLD 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 Australia - QLD 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 Australia - QLD 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 Australia – QLD or the relevant copyright owner. © 2012 Advertising Disclaimer: Advertisements are provided to assist consumers to locate and purchase suitable products and services. Multiple Sclerosis Society of 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 Multiple Sclerosis Society of Queensland is not liable in the event the product is not satisfactory.