MS Life Spring 2016 by MS Queensland

MSLIFE. SPRING 2016

MS QUEENSLANDâ&#x20AC;&#x2122;S PREMIER MAGAZINE FOR PEOPLE LIVING WITH MS

JOHN'S STORY TIM FERGUSON SIT DOWN COMEDY WITH MS

Tips for Managing Change

Group Exercise IS IT FOR YOU?

FROM THE EDITOR FROM THE CEO In this edition of MS Life we celebrate and farewell McKinnon House, a property that we have owned and offered for respite holiday accommodation for nearly 43 years. The news of the sale is bittersweet as we say goodbye to a long-held asset that has hosted over 1,500 holidays in its time, in order to enable MS Queensland to reinvest proceeds into new, much needed permanent supported residential accommodation solutions across the state. We are proud of having been able to provide the use of McKinnon House for as long as we have and creating holiday memories cherished by so many families. We are confident that our new high need accommodation will be as greatly valued in the lives of people living with MS. I thank you for your support of our goal to deliver more supported housing options to those who desperately need it all across our state. I am excited that we are undertaking this journey, to improve the lives of those living with MS and other PND, together.

Dear readers, Spring has sprung, and September kicks off a bumper last quarter of the year for MS Queensland. Our MS Swimathon season starts this month on the Sunshine Coast and the inaugural event in Hervey Bay will see the first-ever swim on the Fraser Coast! The MS Moonlight Walk is back for the 18th year, will you be one of the 4,000 walkers to flood the Brisbane River with our red lanterns? We have also locked in the date for our Annual Conference and AGM in November so donâ&#x20AC;&#x2122;t forget to RSVP! The pages of this MS Life are jam packed with updates, tips, resources and personal stories of those in the MS community. You will also find a special contribution from Aart F Simons, Clinical Psychologist on tips to manage change. You can pull this out and pop it on your fridge if you like. I hope you enjoy this edition and thanks for reading,

Best wishes, Shontiele, Editor Lincoln, CEO

MARK YOUR CALENDARS! MS QUEENSLAND ANNUAL CONFERENCE AND AGM MS LIFE â&#x20AC;&#x201C; SPRING 2016

Wednesday 23 November 2016 Southbank Institute of Technology, Ernest Street, South Brisbane FREE EVENT - 10am start to 2pm Lunch and refreshments provided Numbers are strictly limited Registration is essential to secure your attendance Please RSVP by Friday 28 October to mssociety@msqld.org.au or phone 07 3840 0806. Due to the popularity of this event, preference will be given to Members of MS Queensland More details available at msqld.org.au

are you an

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member? visit msqld.org.au

MS LIFE SPRING 2016

IN THIS EDITION

FEATURES

SUPPORT

REGULARS

PAGE 4 A Celebration of McKinnon House

PAGE 4 Circle of Giving

PAGE 7 Group Exercise – is it for you?

PAGE 8 Tips for Managing Change

PAGE 5 A Place to Call Home

PAGE 10 John’s Story

PAGE 6 New Research – Textured Insoles & MS

PAGE 9 NDIS in North Queensland by Christmas!

PAGE 13 Hervey Bay inaugural MS Swimathon PAGE 12 Questions with Tim: Change, Challenges and Motivation PAGE 15 Tim Ferguson: Sit-down Comedy with MS

PAGE 7 MS and Respiratory Muscle Weakness PAGE 9 Our RSC support in the NDIS World PAGE 18 MS Infoline – just a call or click away

PAGE 12 MS Moonlight Walk PAGE 12 MS Limited Edition Lotteries PAGE 16 PwMS Support Group Update PAGE 17 Advocacy with Nat: Contact your Federal MP

PAGE 6 Better Health Program Testimonial PAGE 15 Nerys’ 21km to Cure MS PAGE 16 My MS Doesn’t Stop Me Story Colphin PAGE 18 Pat’s enduring gift to help others

CONTACT PHONE 07 3840 0888 INFOLINE 1800 177 591 FAX 07 3840 0813 MS Queensland, Locked Bag 370, Coorparoo DC QLD 4151

MS LIFE – SPRING 2016

PERSONAL STORIES

3 Acknowledgement: We wish to thank John for the use of his image on the cover of this publication. Photo courtesy of Josh Kelly, Jack Harlem®

A CELEBRATION OF

MCKINNON HOUSE McKinnon House at Runaway Bay has been a long held property of MS Queensland, and a place that many of you have been able to use and create so many precious family memories. We purchased the property back in 1973 and have kept its doors open for those living with MS to hire as an affordable and equipped respite holiday accommodation option for 43 years. Over 1500 holidays have been had during that time.

After significant consideration and consultation to understand the value of McKinnon House and its utilisation, the MS Queensland Board made the difficult decision in 2015 to place this property on the market. McKinnon House saw its final guests at the end of June and the sale of the property is expected to be finalised by the end of October 2016. Realising the financial benefit from the sale of McKinnon House, MS Queensland will be able to reinvest sale proceeds directly into new high need housing with significant long-term benefits for those living with MS. MS Queensland has a 10 year goal of overseeing the construction of 120 units of high care residential accommodation for people living with MS across the state. Reinvestment of the sale proceeds of

Circle of Giving ROTARY CLUB TO UTILISE THE BEDS FROM MCKINNON HOUSE

MS LIFE â&#x20AC;&#x201C; SPRING 2016

One of MS Queensland's values is Hope and in keeping with this value, surplus equipment from McKinnon House will provide Hope to a community on the other side of the world. The eight beds from McKinnon House have been donated to the Rotary Club of Salt Lake metropolitan Kolkata for use in establishing a birthing centre at Village Tipligirhi in Gosaba island of Sunderba, a community outside of Kolkata (the old Calcutta) in India. Following a recent health camp visit by the Rotary club, they decided in partnership with SAFE inch, to build a health care centre especially for birthing and infant treatment. The village does not have a health care centre or school, with the nearest health centre being a four hour boat trip away. Isolation from adequate health care and birthing

McKinnon House into new accommodation projects will assist in making that goal a reality. In recognition of the importance of holiday respite, the MS Queensland Services team will continue to offer eligible people access to an expanded number of subsidised holiday respite options available in locations across Queensland. We believe that this offers more choice, as well as being an equitable and cost effective approach especially for people who live outside southeast Queensland and cannot access McKinnon House. If you are seeking support for holiday respite, please speak with your local MS Queensland Regional Services Co-ordinator or contact our Infoline on 1800 177 591.

support has resulted in most of the women of this village performing dangerous home-births without appropriate health professional guidance, resulting in many women experiencing severe complications during childbirth and health difficulties afterwards. Sadly, infant mortality is high in the village as a result. The donation of our eight beds from McKinnon House is extremely valuable in establishing this muchneeded medical centre. The organisation of these supplies has been a group effort, with the Surfers Paradise Rotary Club assisting with relocating the donated items to Brisbane and the cost of the freight of these supplies being raised and paid for by the Rotary Club of Centenary Sunrise. In addition to the hospital equipment, a range of supplies for the establishment of a local school in the village will also be sent over in the 40ft container. The container ship will take approximately 3 weeks to make its way to India. We will share a further update in the coming months, once the medical centre is up and running.

A PLACE TO CALL HOME: MS QUEENSLAND HOUSING DEVELOPMENTS

All of our housing developments include the latest in accessible design and incorporate cuttingedge technology and equipment backed-up with personalised care support, based on our over 40 years in providing supported accommodation to those living with a progressive neurological disease.

Queensland will provide 24/7 care and support for all residents of the apartment complex. The Youngcare/MS Queensland Albany Creek Apartments will be officially named in the coming months and is scheduled for completion in mid 2017.

Towards the end of this year, we will welcome the addition of four independent living apartments within a larger residential complex built by the Brisbane Housing Corporation (BHC). This development will also have two commercial spaces that MS Queensland can lease or operate from to generate further income to support people living with a progressive neurological disease.

The largest development project on the drawing board is our residential accommodation building at Springfield. This custom designed building will provide 18 units of high care residential accommodation, with fully integrated specialised support equipment and personalised care support. The building will take 12 months to complete and is expected to open to residents in late 2017.

Our collaborative development in Albany Creek in partnership with Youngcare, aims to provide supported accommodation for eight residents who currently live in the care of ageing parents and require intensive ongoing daily support. As well as being an equal owner of the building, MS

All these projects are a significant financial investment by MS Queensland and a bold step forward in reaching our strategic goal to deliver 120 apartments of independent high need housing to those who desperately need it, over the next 10 years.

MS LIFE â&#x20AC;&#x201C; SPRING 2016

MS Queensland has a vision to expand our permanent high need residential accommodation offerings over the coming years. As part of this expansion, we are already investing in the development of 30 new apartments using a combination of MS Queensland resources and strategic partnerships with other organisations in order to get more residential care solutions on the ground, faster.

Better Health Program

TESTIMONIAL

DO TEXTURED INSOLES IMPROVE WALKING?

I have just successfully completed the six-week Better Health with Self-Management Program offered through MS Queensland in partnership with Blue Care Allied Health Services.

RECRUITING VOLUNTEERS

I have deliberately used the word ‘successful’ as I firmly believe the course was a great success! This sensible, practical and well-structured course armed me with the basics that every individual should be taught; whether they are living with a chronic illness or are able-bodied.

Many people with MS experience problems with walking and balance, which can make day to day activities difficult and often leads to falls. Improving walking ability is of primary importance in maintaining health, independence and quality of life in people living with MS. Foot sensation plays a significant role in keeping the body upright and balanced while walking, yet we know from previous studies that people with MS often have reduced sensation on the soles of their feet. Wearing a specially designed shoe insole, which enhances sensory information at the feet, could help people affected by MS to walk better. This would offer healthcare professionals a new and additional treatment technique to help manage walking problems in MS. Ongoing research by Dr Anna Hatton at the University of Queensland supported by MS Research Australia, is exploring the benefits of several different types of insoles for walking ability and balance.

MS LIFE – SPRING 2016

An earlier exploratory study from Dr Hatton’s team has revealed that two types of insoles had significant benefits on posture and increases in average stride length, but had minimal effects on balance after two weeks of wear. This study was compared across two groups and measured the performance of people wearing the insoles to people wearing casual shoes. Given the promising initial data from the pilot investigation, this study is now being expanded, and the researchers are seeking volunteers to participate to test whether wearing speciallydesigned shoe insoles for longer periods can help improve walking patterns and foot sensation in people with multiple sclerosis.

The program has demonstrated to me that most any problem can be overcome using the highly effective self-management toolbox and by following the process taught; step-by-step, breaking down what initially appeared to be an insurmountable task, into governable steps. I also feel confident that I am now able to trust my own judgment when following the decision-making process by scoring each option and adding up the final result. The action planning component of the session ensures that goals are no longer just vague dreams. The scoring of your own confidence level to achieve the particular goal set provides a greater understanding of your own belief and ability to be able to achieve it; as too low a confidence score offers the opportunity to adjust the goal to something a little more realistic, setting yourself up for success as opposed to possible failure and disappointment. Tas and Natalie, you both were wonderful leaders and kept the course on-track, enjoyable, interesting and lighthearted where necessary. I applaud your competence in encouraging camaraderie and inclusion for all participants. I will now endeavour to keep these skills alive and well by practicing these tools with the rest of our MS Physio group at Gympie. Thank you for providing a promising way forward and a deep feeling of empowerment.

For further details, visit the Queensland page of MStrials website www.mstrials.org.au/trials/qld

Kind Regards, A very grateful Jo

People with MS rarely complain of respiratory dysfunction, although on testing, respiratory dysfunction is common, even in people with early disease progression. Respiratory muscle function is important to keep your body strong. Neck and chest muscle strength is required to expand the chest wall to allow the lungs to expand when you breathe in. When the lungs fill with air, the blood vessels in the lungs absorb oxygen necessary for your body to function well. If the muscles that expand the chest are weak, the lungs cannot expand fully and less oxygen gets into your blood. Abdominal muscle strength is also required to achieve a forceful cough necessary to remove mucus from the lungs when you have a respiratory infection. This abdominal muscle strength is additionally needed for loudness and endurance of speech. These same respiratory muscles also have important non-respiratory functions such as core stabilization, trunk stiffness, producing rotational movements of the trunk and postural control. HOW IS RESPIRATORY MUSCLE STRENGTH TESTED? Testing is done using a device called a manometer, which measures air pressure as you breathe in and out. HOW CAN PHYSIOTHERAPY HELP IMPROVE RESPIRATORY MUSCLE STRENGTH? Just like any other muscle in your body, the muscles of respiration can be strengthened with resistance exercises using pressure loaded threshold trainers. Most respiratory muscle training programs take only 10 minutes a day and have been shown to be effective in people at any stage of MS. Benefits of respiratory training include increased muscle strength, muscle endurance and decreased fatigue. Strong respiratory muscles can also assist with having good balance, improve walking endurance and reduce respiratory infections and/or provide greater ability to recover from respiratory infections.

GROUP EXERCISE IS IT FOR YOU? ‘First times’ for most things can be daunting. Trying something new, possibly at a time when you are feeling vulnerable and not at your best can be worrying especially when you cannot be sure of who is going to be sharing this experience. At MS Queensland Physiotherapy Service the first time experiences of most of our group participants are very similar. Most people are relieved to meet ordinary people just like themselves, living daily with MS. The sense of being alone for some is diminished. Many friendships are made and support networks are created. This is the power of The Group. The Group effect is a scientifically proven concept. Support, inspiration and motivation helps people stick to rigorous exercise routines and achieve physical goals. Fun, enjoyment and competition encourage people to push a little harder and making exercise feel easier. Fun and the intensity of your workout are also key ingredients in influencing brain plasticity and repair through exercise. Research has also shown that circuit training in groups delivers great results for individuals. Circuits consist of different exercise stations designed to work on different areas and are tailored to the individual. General fitness and therapeutic exercise, such as balance training, can all be delivered in the circuit group format. For more information on future exercise groups at MS Queensland please contact our Physiotherapy team on 1800 177 591 or email physio@msqld.org.au

MS LIFE – SPRING 2016

MS AND RESPIRATORY MUSCLE WEAKNESS

TIPS FOR MANAGING CHANGE SPECIAL CONTRIBUTION FROM AART F SIMONS, CLINICAL PSYCHOLOGIST Living with a lifelong condition like MS involves navigating the various changes that come over time, as we develop and change as individuals. Clinical Psychologist, Aart Simons has kindly shared some tips for managing change. Feel free to pull this article out and place it on your fridge (or behind the toilet door). Anywhere you can look to it regularly and incorporate the tips into your daily life.

Learn not to pathologise your emotional

We can be certain that everything in life changes and does so all the time. It is neither the fittest nor the most intelligent that survives; it is those who adapt to change that do.

reactions to the impact of the MS diagnosis and your symptoms. Grief, anger, depression, anxiety and stress are normal reactions. Recognize your emotional triggers, which will help you to slowly master them in order to adapt to the many changes in your life.

Learn to tame your brain. Teach it to have regular breaks from focusing on problem solving. When you physically rest, learn to rest your brain at the same time. Practice mindfulness and other relaxation skills. Permit yourself to sleep.

Understand that each of us deal with change in different ways and at different rates, due to many personal and social factors.

Value and keep working on, your relationships with your family and friends. Educate them on your MS symptoms. Tell them how MS fatigue behaves differently from tiredness and explain the uncertainty and rapid changes that confuses not only you, but probably them as well.

MS LIFE – SPRING 2016

Books have been written about managing change and may be helpful to read. Maybe join a support group, have some sessions with a psychologist, phone Beyond Blue or Lifeline, try online programs and contact Relationships Australia. Remind yourself that seeking help is a sign of strength and will assist you to cope better with changes that are a natural part of MS and life in general.

Learn to be your own best friend. Would you advise your best friend to do things that would put them in harm’s way? Of course not! Advise yourself out loud so you can hear yourself giving that positive advice. Phone a friend and have a day off. Advise yourself on what you found helpful in the past to help you deal with change.

If you would like support in how to manage change, please contact our Infoline team on 1800 177 591.

NDIS

NORTH QUEENSLAND by Christmas

Our RSC support, in the NDIS world As the NDIS is introduced in stages across Queensland in the coming years, MS Queensland will continue to be there to support you as the scheme reaches your local area. Understanding the different terminology used and what those terms mean to you is one area that we can help you with starting now! Participants in the NDIS will receive a support plan, which includes a budget allocated to the coordination of supports. MS Queensland is a registered provider of ‘Support Coordination’ with the NDIA and as such you can nominate MS Queensland to assist you to manage your plan and supports. WHAT IS SUPPORT COORDINATION? For many of you, this is the same valuable service that you’re familiar with as our Regional Service Coordinator service. However in an NDIS environment that service is now called Support Coordination and is funded as part of your individual plan.

It’s great to know that a large part of north Queensland will have the National Disability Insurance Scheme live and happening before Christmas. From 1 October you can apply for the NDIS if you live in Townsville, Charters Towers, Burdekin, Hinchinbrook, west to Mt Isa and up to the gulf.

Get started by contacting the MS InfoLine on 1800 177 591, email ndis@msqld.org.au, or visit msqld.org.au/ndis

From 1 November, the NDIS rolls out in Mackay, Isaac and Whitsunday areas. It’s so exciting to see people in these areas confidently preparing for their new future. There are five easy steps: 1.

Think about what you need

2. Talk to us at MS Queensland or Spark NeuroCare and get NDIS ready 3.

Meet your NDIS planner and develop your plan

Together we turn your plan into action

Live your life with regular, funded support

Support Coordination is an element of your NDIS plan and provides you with: • help to navigate the NDIS system • guidance in setting up your NDIS plan • one point of contact to implement and coordinate all the supports in your NDIS plan • the confidence that all your supports are working for you without the stress of managing them yourself.

You can nominate MS Queensland as your support coordination provider at your NDIS planning meeting. Before then, more information about the NDIS and how MS Queensland is here to support you is available at msqld.org.au/ndis

MS LIFE – SPRING 2016

There are different levels of funding allocated to this important aspect of your plan. The level of support funding you receive will depend upon the complexity of your individual plan and the ability of the participant to implement their own plan.

JOHN'S

STORY At the time John was diagnosed 33 years ago, he had a young family, was a career man and a fit, avid cyclist. Today John is a proud Grandfather, Father, Husband, is retired and lives positively with MS. After giving up his love of cycling, due to symptoms and safety reasons, John started swimming and has done so every day for the past 14 years. Recently, cycling on a tricycle has been added to his daily exercise regime.

MS LIFE â&#x20AC;&#x201C; SPRING 2016

For the next 10 years, similar symptoms resurfaced about twice a year. John thrived in a high pressure job, loved work and seemed to manage but the sudden passing of his wife saw his symptoms worsen. Years later, John met Christina and they married. Symptoms continued to progress with numbness moving up his legs and hands when doing lots of hands on activities or if stressed. Problems with balance became more apparent and lots of falls and breaks followed. For a short period of time, John lost all mobility and Christina insisted on some intervention which is the time he met his current Neurologist. The end of each work day left John feeling wiped out with extreme fatigue so he retired in 2002. By doing so, the progression of MS has slowed significantly. John joined an MS Queensland PwMS Support Group almost 10 years ago which led to Presidency. He saw people hurting and wanted to help. A Physiotherapist from MS Queensland went to the local PCYC gym to show the support group and Personal Trainers exercises that would be beneficial. That eight week program was so successful that the support group decided to continue the program which still exists today. An MS Queensland Physiotherapist regularly visits the gym to ensure both clients and trainers are doing the exercises correctly. Managing fatigue is always a challenge for John. He spreads his exercise over the day and allows plenty of time to rest in between. He uses a walker and when there’s a need for a lot of walking, a wheelchair. “My attitude towards life has always been positive. Rather than be bitter and think why did it happen to me, just get on with life. Accept the diagnosis, accept the things you can’t do anymore and look instead at the things you can do.” Today John leads an active life between family, exercise, being a member of MS Queensland’s Services Management Advisory Committee, the University of the Third Age and a Ukulele group that meets weekly to jam. “The most important message I want to convey is that physio and exercise is important for anyone living with MS and much more so for anyone who is physically challenged. I’ve seen huge benefits to those people who have greater mobility problems and want to help, inspire and encourage others to get involved with physio and exercise programs.”

To find out more about the services we offer and how MS Queensland can collaborate with you to achieve your goals, please visit our website msqld.org.au or contact our Infoline on 1800 177 591 or info@msqld.org.au

MS LIFE – SPRING 2016

John’s first MS symptoms presented as pins and needles in his feet which disappeared after eight weeks. Asked to complete a medical questionnaire at work, his honest answers about the pins and needles concerned his employer who suggested he see a Neurologist. In 1983 John was diagnosed with MS and told there was no cure, he’d likely suffer from fatigue and to live life the best he could. Having a wife and young dependent family, John put the diagnosis at the back of his mind and just got on with life.

SUPPORTING THE MS CAUSE

You’re invited to join the MS community on Friday 21 October for our annual MS Moonlight Walk! This leisurely 5km or 10km walk is a fun way to share a Friday night with friends, loved ones, work colleagues, and is a family favourite. Walkers come dressed in an array of costumes and the start line at the Cultural Forecourt at South Bank Parklands is truly a sight to behold. There are tutus, tiaras, special team outfits, super heroes, fluoro, a sea of colours and more!

Botanic Gardens before crossing the Goodwill Bridge to continue the fun with live music at South Bank.

Each walker receives their very own MS lantern before they begin their walk, which will take in the best of Brisbane, including the illuminated Kangaroo Point Cliffs, Story Bridge and lush

For more information and to sign up for this event, visit MoonlightWalk.com.au or call the Events Team on (07) 3840 0828.

This year’s walk is expected to be the biggest yet and raise $600,000 to fund support services for more than 3,700 Queenslanders living with MS, and fund research projects to find a cure, so get involved today!

MS LIMITED EDITION LOTTERIES MS LIFE – SPRING 2016

The 2015/16 financial year was a great one for Lotteries – our draws were so popular that we exceeded our fundraising target, meaning even more funding can be directed to delivering support and services for those living with MS across our vast state. Our winners were also pretty happy with the outcome; this lucky person pictured won not only a Mercedes AMG, but also $46,000 worth of first class travel! The new financial year is off to a flying start with the first draw selling out in near record time. Why not pick up a ticket at mslimitededition.com.au? With only 8,000 tickets sold per draw the odds are truly amazing!

SUPPORTING THE MS CAUSE

NS O H T A M I MS SW

T U O K O O L ! Y A B Y E HERV

The 2016/17 MS Swimathon season will see the exciting addition of an inaugural swim in Hervey Bay! We are extremely excited to be holding our first event in the Fraser Coast region at the Hervey Bay Aquatic Centre on Sunday 27 November. Those of you who have attended a Swimathon event before will testify, it’s a great day out and a wonderful way to join with others in the MS community to raise valuable funds to support locals living with MS. The day will include giveaways for the best-dressed teams and the local Rotary Club will be onsite cooking up a delicious storm all day long!

MAKE a

donation

HELP

MAKEa

change

You can help us by spreading the word and letting your family and friends who live in this region know about this great opportunity. Go to MSswimathon.com.au/herveybay to register your interest and to make sure you don’t miss out on any important information.

Today four people will discover they have MS – and four more tomorrow, the next day and every day. Some will ask, “Why me?” and “What’s going to happen to me?”. They might struggle to come to terms with a new diagnosis – they might not even fully understand what MS is. Your generosity will give them hope, because with your help, MS Queensland can support them throughout their journey with MS. Make a tax deductible donation using the slip on the back of this magazine or visit msqld.org.au/donate

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CMY

MS LIFE – SPRING 2016

QUESTIONS WITH TIM

CHANGE, CHALLENGE AND MOTIVATION It’s pretty normal for things that started off as new and exciting to lose their lustre over time. Most humans find it hard to sustain interest in anything without some sort of ongoing reinforcement. To understand this, we need to understand something called self-determination theory.

Proponents of this theory suggest motivation comes in two flavours: extrinsic and intrinsic. Extrinsic motivation is external, for instance, being given a bonus for staying late at work, or going for a ride/walk/swim because your friends want you to. Extrinsic motivation can be pretty powerful but there are two downsides: i) it’s short lasting, ii) the amount of stimulus / reward required for motivation increases over time. MS LIFE – SPRING 2016

The other type of motivation is intrinsic motivation. This motivation is internal: you want to do something because it means something to you, not because someone else wants you to or told you to, or because you’ve been offered an incentive. Maintaining an interest in any activity – be that a new job, sport, or heath/lifestyle decision – the change must come from YOUR internal drive in order to be lasting – doing things because

other people want you to, or because you feel pressured to, simply won’t last. So what has all this got to do with living with MS? Well pretty much everything. As much as I have pinched some of this from my favourite mountain bike website the same exact principles are applied to chronic disease self-management. People look to make changes to support their knowledge of their condition and their health. There are things we can’t change but there are things we can. Extrinsic motivators get things started, but Intrinsic motivators keep things going.

Ref: Dr Jeremy Adams (http://flowmountainbike. com/features/when-the-love-affair-is-over/ )

For more information please contact one of our Nursing team via our InfoLine on 1800 177 591.

TIM FERGUSON

– SIT-DOWN COMEDY WITH MS Tim Ferguson has built his career on standing up, stand-up comedy that is. So when he was finally diagnosed with MS after a lifelong battle with symptoms, it was a relief to finally know what it was that he was living with. This was also a turning point for Tim’s career, as he decided that his dreams of continuing his passion for comedy weren’t over, he just had to change his destination. Branching out into writing a book about the art of comedy, and now teaching comedy writing to others including a course at the New York University has kept Tim busier than many performing artists. Add to that work load, a revival of the Doug Anthony All Stars (this time without the dancing) on Broadway and the recent filming of Spin Out, an Australian romantic comedy about a country town’s bachelor and spinster ball that Tim co-wrote and co-directed. Tim is a busy man! On the set of Spin Out, Tim was quick to confirm that it wasn’t a “teach Tim show”, he had to keep up with

Sony Pictures will release Spin Out in Australian cinemas this September.

the demands and tight timeframes of filming the same as anyone else. He does credit though, that being able to manage his MS while meeting those demands came down to the incredible support network he has around him. “I had so much fun firstly co-writing and then codirecting Spin Out. The B&S Ball is such a pillar of Australia’s rural youth and there is some pretty fancy and exciting ute driving too! I just want everyone to walk out of the theatre feeling good and enjoying an insight into the fun of growing up in rural Australia.”

“I couldn't seem to get on top of my fatigue. Then I developed a tingling in the left side of my tongue. I put these symptoms down to stress. My GP sent me for an MRI and it came back with changes suggestive of MS. I was then referred to a neurologist who confirmed the diagnosis.” Nerys was quick to put the news of her diagnosis to good, by entering in this year’s Jetty2Jetty half marathon, just months after her initial diagnosis.

“It has always been an ambition of mine to run a half or full marathon but I kept putting it off. Once I was diagnosed, I knew that I couldn't keep delaying my dream. My training partners got behind me and we put together a team. The run was great, there was an awesome atmosphere and I was proud to wear my red and white shirt. My team and I managed to raise over $3,200!” If you are eager to take on a challenge event to raise funds and awareness for MS Queensland, please contact Clancy Feuerriegel on 07 3840 0887 or Clancy.feuerriegel@msqld.org.au

MS LIFE – SPRING 2016

Nerys was just 41 years old with three beautiful children when she was diagnosed with multiple sclerosis late last year. As a Nurse Unit Manager in a large the Emergency Department, Nerys has built her career on long shifts and dealing with high-pressure situations. But gradually, MS symptoms became apparent.

PWMS SUPPORT GROUP UPDATE t ' n s e o D S M My

In our youth we thought time went far too slowly and we seemed to be always waiting. How times have changed where as now the incessant question is "where did it go?"

y r o t S e M p o t S

COL AKA COLPHIN My name is Col, known to my mates as Colphin. This nickname was given to me by my mates because every time I would paddle out for a surf I ended up in the middle of a pod of Dolphins. I have primary progressive MS, diagnosed ten years ago and Crohns Disease for 44 years. I am 60 years old. My MS has a pretty significant impact on my mobility although I still get about with the help of my trusty walking stick most of the time! For the past 45 years I have been a fanatical surfer and artist. When the diagnosis came, I thought that I wouldn’t surf again. But then I realised no one had said I couldn’t surf. I just couldn’t stand up! So I took up knee boarding which allows me to still be out in the sea. It’s a bit harder to paddle, I get tired more quickly but as a work-out it can’t be beaten.

The MS Support Groups continue to offer likeminded friendship, comradery and information on monthly or bi monthly gatherings in various locations around Queensland. Cafes and hotel restaurants are by far the most popular meeting places. For those who are hesitant to come along to a 'support' group, be assured that everyone is most welcome and the 'meetings' are casual and never shy of a few laughs. You can find a support group near you by asking your local RSC or under ‘MS Support’ at msqld.org.au. Our annual Ann Langley PwMS Support Group Forum will be on Thursday 24th November with a new venue to be advised. It is by far the favourite networking gathering for support group leaders from all over Queensland. The MS Queensland Annual Conference and AGM will be held on Wednesday 23rd November, the day prior to the forum with all welcome to join. More information is available on the MS Queensland website.

MS LIFE – SPRING 2016

Having MS doesn’t mean you can’t achieve your goals. You just have to change the way you chase them, be patient and believe in yourself. It’s hard work. It’s remembering to have a giggle or three along the way. It also means being proud of yourself for TRYING. Colphin

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Advocacy Natalie WITH

We advocate, on behalf of our community for targeted assistance

As we know, people with MS typically use more energy in their homes than other households and as such, the impact of energy use for people living with MS always remains a priority advocacy activity for MS Queensland. We advocate, on behalf of our community for targeted assistance, in a number of ways including representation on various committees, providing submissions and presenting at inquiries. Some of the most powerful information we are able to share, are the case studies of the experiences of people in the MS community. Earlier this year MS Queensland presented information regarding the Medical Cooling and Heating Electricity Rebate at the Queensland Productivity Commission (QPC) Queensland Electricity Pricing Inquiry. We also included a case study of the additional need and subsequent cost of running air conditioners during summer in Queensland, in this particular example North Queensland. When coupled with evidence-based research, sharing personal case studies enables others to better understand the reality for those living with a heat affected medical condition.

DRIVE YOUR MEMbERSHIp fURTHER JOIN ONlINE AT WWW.MSQLD.ORG.AU

MEMbERSHIp ApplIcATION/RENEWAl TO: Hon Secretary MS Queensland Locked Bag 370 Coorparoo DC QLD 4151

Application Date: ____ /____ /____ Phone: (07) 3840 0888 Fax: (07) 3840 0813 Email: mssociety@msqld.org.au

I wish to SUBMIT an application for Membership of MS Queensland. I wish to RENEW my application for Membership of MS Queensland. I enclose my subscription for: Annual Ordinary Membership $33.00 (inc. GST) (1 July – 30 June) Life Membership $330.00 (inc. GST) (Life Membership can only be granted following application for Ordinary Membership)

MY pERSONAl DETAIlS ARE AS fOllOWS: Full Name ........................................................................................................ Address ........................................................................................................... ........................................................................................................................ Postcode ................................................ Phone No .........................................

U O Y E V HA EN FORGOTT

TO RENEW

Email ............................................................................................................... Date of Birth .................................................................................................... plEASE INDIcATE YOUR INTEREST IN MS QUEENSlAND I have MS A family member has MS I know someone with MS

I just want to support the MS cause Other ........................................

MS MY SUbScRIpTION, AS SHOWN bElOW, IS ENclOSED: Ordinary Life Donation TOTAl

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

(All donations $2 and over are tax deductible)

pAYMENT DETAIlS: Please make cheques payable to Multiple Sclerosis Society of Queensland Visa M/Card Amex Diners OR please charge my Card No __ __ __ __ / __ __ __ __ / __ __ __ __ / __ __ __ __ Expiry Date__ __ / __ __ Name on card ......................................................... Return this form with your payment to MS Queensland using the enclosed Reply Paid envelope. Thank you for your support. Services are delivered to registered clients on the basis of individual assessment and identified needs. Membership does not automatically entitle you to receive services – people with MS must register as a client and provide proof of diagnosis. For more information call the Information Line on 1800 177 591.

Membership with us is just $33 a year and helps us provide important information and education about MS, and leading MS research to find a cure, through publications such as MS Life which comes at a significant cost each quarter.

WWW.MSQlD.ORG.AU pm 15 1:24

30/03/20

Membership benefits also include preferential RSVP for the Annual Conference which has limited attendee places available. To support MS Queensland's communication activities please join or renew your membership by simply contacting us at mssociety@msqld.org.au or call 07 3840 0888.

If you would like to share your energy case study or would like to discuss any advocacy issues, please contact Natalie.walsh@msqld.org.au or 07 3840 0823.

CONTACT YOUR NEW (OR RE-ELECTED) FEDERAL MEMBER Don’t be shy; make sure your newly elected/reelected member of Federal Government knows who you are and what you would like them to do for you over the next three years of Government. The next three years are when the NDIS will be introduced throughout Australia. Make sure your member of Parliament understands what this means for you and their community. If you would like a hand contacting your Local, State or Federal Member of Parliament please contact Natalie Walsh Natalie.walsh@msqld.org.au or 3840 0823.

MS LIFE – SPRING 2016

To maintain and share further understanding with stakeholders we need your input. Please keep an eye out for a MS Queensland Energy survey this month as we aim to gain further understanding of energy use for Queenslanders living with MS.

ft An enduring gi to help others Pat has been a long-term supporter of MS Queensland, and kindly agreed to share why she has included MS Queensland in her will. Pat first started supporting MS Queensland back in the early 1980's when she answered a telephone call seeking donations. From that call, Pat became more familiar with MS and that there was no cure. Being touched by this information, Pat wanted to take action and help find a cure through giving regular donations.

The ongoing support from generous people like Pat is invaluable and recently Pat chose to take the extra special step of including a gift in her will for the work of MS Queensland. After finding out that a close friend’s sister had been diagnosed with MS, it made Pat even more passionate about the work of MS Queensland and made for a very personal connection in her decision to include a gift in her will. Pat’s particular desire for her gift is that it would “enable the wonderful work done by MS Queensland to continue” while finding a cure. Discussing the details of ones will is certainly a personal subject, but for anyone who might be thinking about including a charitable gift in their will, Pat did share this message, “as wills are NOT usually discussed I am not likely to be asked this question directly! However, if it was the case, I would encourage anyone to help people with MS by including MS Queensland in their will”. For more information or to have a confidential discussion on how you may consider including a gift in your will for MS Queensland, please contact David Martin on 07 3840 0814.

MS QUEENSLAND

INFOLINE

We offer an Infoline phone service where anyone can access up-to-date information and resources on MS, NDIS and community resources. This service is a point of contact where callers can conveniently find answers or direction in the one place; whether you are a person with MS, a carer, family member, health professional or someone from the public with an interest in the condition.

MS LIFE – SPRING 2016

We also have an Online Resource Centre on our website which contains current, evidence based information and fact sheets at msqld.org.au/site/msresources. Our more detailed and extensive range of resources can be obtained by contacting our helpful Infoline team, Nicky and Rachel on 1800 177 591. Resources can be posted or emailed to you by request.

CONNECTING WITH MS QUEENSLAND

The NDIS and Continence Care... Are you ready?

The National Disability Insurance Scheme (NDIS) is set to start rolling out nationally from the 1st of July 2016. This will represent a significant shift in the way that people with a long term disability access their products and their care. Coloplast as a leading provider of products for intimate healthcare needs want to support you on this journey being a trusted partner for information, support, and the tools that you will require to get the best continence care for your condition. Please call our NDIS support line on freecall 1800 880 427 for a confidential discussion about the NDIS and your continence needs, or visit www.coloplast.com.au/ndis

E L P O E P P L E H T A H T S T N E V E WITH MS LIVING

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

16 OCTOBER

21 OCTOBER

06 NOVEMBER

Griffith Sport Mt Gravatt

Jindalee

MSswimathon.com.au

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12 NOVEMBER

23 NOVEMBER

Toowoomba

ANNUAL CONFERENCE AND AGM

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msqld.org.au

MSswimathon.com.au W 27 NOVEMBER

Hervey Bay

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Unless otherwise stated, the views expressed in MS Life and submitted photography are those of individual authors and MS Clients, and not of MS Queensland. MS Queensland does not expect or invite any person to act or rely on any information, statement or opinion in MS Life, and readers should make and rely on their own inquiries, and obtain professional advice, before making any decisions or giving any advice arising out of any such information, statement or opinion. Neither MS Queensland nor any of its employees, agents or contributors shall be liable for any errors or omissions in any material in MS Life, and in no event will MS Queensland or any of its employees, agents or contributors be liable for any loss or damage arising from reliance on any information, statement or opinion in MS Life. Apart from any use permitted under the copyright act, no material in MS Life may be reproduced or communicated to the public in whole or in part without written permission from MS Queensland or the relevant copyright owner. ÂŠ 2016 Advertising Disclaimer: Advertisements are provided to assist consumers to locate and purchase suitable products and services. MS Queensland does not endorse any one product or service over another, nor do we receive any commission on sale of items. Consumers are encouraged to discuss the options for purchase with the particular supplier as MS Queensland is not liable in the event the product is not satisfactory.

Y A D O T E T A DON

HELP SUPPORT MS QUEENSLAND

DONATION:

I would like to give a tax deductible gift of $25 $45

$40

Surprise us!

I would like to make a monthly credit card donation of $

per month

PAYMENT METHOD:

PLEASE RETURN THIS FORM TO: MS Society of Queensland Locked Bag 370 COORPAROO DC QLD 4151 OR Phone: 1800 CURE MS (1800 2873 67) OR Fax: (07) 3840 0813 OR secure web donations msqld.org.au/donate

MY PERSONAL DETAILS ARE AS FOLLOWS: Full Name....................................................................... ............................................................................................. Address........................................................................... ............................................................................................. ............................................................................................. Post Code...................................................................... Phone No....................................................................... Email.................................................................................

Cheque (made payable to MS Society of Queensland)

Amex

or debit my

_I have already made a bequest to MS Queensland in my Will Visa

MasterCard

_Please email me your monthly e-newsletter, MS Insight _I do not wish to receive any further newsletters _I'd like more information about MS Queensland fundraising activities

Expiry:

Signature:________________________

MSSPR16

Cardholder Name:______________________________

YOUR PRIVACY: MS Queensland complies with the Australian Privacy Principles. Our Privacy policy is available on the website at msqld.org.au This information is being collected for the purpose of providing care and services to clients, and promotional activities and information services. If you wish to change the way you give, or to update your personal details, please call our supporter services team on 07 3840 0888.

ABN 56 731 473 412

_Please send me information about making a bequest in my Will

Money Order