MSLIFE. AUTUMN 2017
MS QUEENSLANDâ€™S PREMIER MAGAZINE FOR PEOPLE LIVING WITH MS
PAM'S JOURNEY WITH MS Making the most of life
ANOTHER WORLD FIRST FOR AUSTRALIAN RESEARCHERS
SHARE YOUR MS STORY DURING MAY TO CELEBRATE
WORLD MS DAY
OCCUPATIONAL THERAPY AT MS QUEENSLAND
FROM THE EDITOR FROM THE CEO This year is off to a flying start with many new and inspiring projects being delivered to help support people living with MS right across Queensland. We have many exciting things planned for the rest of the year so it is shaping up to be a very big and rewarding 2017. The National Disability Insurance Scheme (NDIS) continues to rollout in Queensland and is already changing lives in Townsville, Mackay, Toowoomba and surrounding areas. We can help you in determining and planning the best outcome for your situation. If you’d like to find out what the NDIS means for you, I encourage you to visit our website msqld.org.au/ndis In just a few months we plan to take delivery of eight brand new, purpose-built apartments for people living with progressive neurological diseases. Together with project joint venture partners, Youngcare and Queensland Government, we will own and operate the stunning Albany Creek apartments for people needing 24/7 high need support (page 4). During the coming months you’ll also see many of our regular activities including support of MS research through Team Cure MS (page 11), MS Swimathons (page 10), MS Limited Edition Lotteries (page 10), the MS Brissie to the Bay bike ride (pages 5 and 11) and awareness raising through the 2017 World MS Day activities (page 4) in May. Of course, our focus always remains on people living with MS and other progressive neurological conditions so I hope you find our cover story about Pam (page 8), the exciting introduction of our NeuroPartners alliance (page 13), and our new occupational therapy program (page 6) of interest and inspiration. MS LIFE – AUTUMN 2017
Please do not hesitate to reach out to MS Queensland at any time, and make us your first choice for MS information, education, treatment care and support in Queensland.
are you an
member? visit msqld.org.au
Best wishes, Lincoln, CEO
Dear readers, Welcome to the Autumn edition of MS Life. It’s an exciting time at MS Queensland as the NDIS rolls out across the state and our housing projects transition from concept to reality with our Lutwyche Apartments now available and our Albany Creek housing development, a partnership of MS Queensland, Youngcare and Queensland Government speeding along. This year is already flying by and activities are ramping up with registrations for our Brissie to the Bay bike ride now open with courses ranging from 10km to the new 100 mile (that’s 160km) course for endurance riders. Plus there’s our Cycle Challenge (more on page 16), making the event an all inclusive and fun challenge for all ages and abilities. On the cover of this edition is Pam who lives positively with MS. Pam was determined not to let her diagnosis impact her job as a teacher aide or get in the way of her spending time with her much loved grandchildren and travelling the world (page 8). Finally and importantly, World MS Day is on Wednesday 31st May – a day where the world wide MS community unites to celebrate global solidarity and hope for the future. We’d love you to be involved (see more page 4). I hope you enjoy our Autumn edition of MS Life. Thanks for reading. MS Life is taking a break over Winter and we'll be back to you in Spring. With kindness, Kristy Editor
MS LIFE AUTUMN 2017
IN THIS EDITION
PAGE 4 World MS Day – share your MS story during May
PAGE 10 MS Swimathons
PAGE 6 NeuroPhysio Update
PAGE 10 MS Limited Edition Lotteries
PAGE 6 Occupational therapy at MS Queensland NeuroFunction Update
PAGE 7 Another world first for Australian MS researchers PAGE 8 Pam’s Journey with MS Making the most of life PAGE 13 Albany Creek apartments on track to completion!
PAGE 11 Team Cure MS PAGE 11 Brissie to the Bay PAGE 16 PwMS Support Group update PAGE 17 Advocacy with Natalie PAGE 15 Questions with Tim PAGE 18 MS resources
PERSONAL STORIES PAGE 12 ‘Taking Control’ of MS
PAGE 14 MS Queensland is proud to be given the charity tick of approval
PHONE 07 3840 0888 INFOLINE 1800 177 591 FAX 07 3840 0813
PAGE 14 My MS doesn't stop me
MS Queensland, Locked Bag 370, Coorparoo DC QLD 4151
PAGE 13 NeuroPartners PAGE 7 NDIS and you PAGE 16 MS Cycle Challenge 2017
MS QUEENSLAND'S EASTER TRADING HOURS MS Queensland offices across the state will be closed for the Easter period from Good Friday 14 April 2016 and will reopen on Tuesday 18 April 2017. If you have any issues or concerns with your MS during this period, please contact your local GP or closest hospital emergency department.
MS LIFE – AUTUMN 2017
PAGE 5 Katie helps others to find their courage
3 Acknowledgement: We wish to thank Bev for the use of her image on the cover of this publication. Photo courtesy of Josh Kelly, Jack Harlem®
Y A D S M D L WOR
ORY T S S M R U SHARE YO
This year, World MS Day will be celebrated on Wednesday 31 May, 2017 – a date where the world wide MS community comes together to celebrate global solidarity and hope for the future. The theme for this year is ‘Life with MS’. To symbolise this day, the iconic Brisbane City Hall and Gallery of Modern Art (GOMA) will be lit up in red. Whilst it is very hard to gather together in one space, we can connect through sharing our stories throughout the year, and in particular in the month of May and on World MS Day. We are delighted to once again, with the great support of MS Ambassador, Mayor Paul Pisasale invite people to share their stories of living with MS. He encourages everyone to live positively with MS and everyone who shares their story is invited to Mayor Pisasale’s World MS Day celebration.
Read more about World MS Day and how you can get involved at msqld.org. au/site/get-involved/ celebrate-worldms-day
We encourage everyone in our community to share their short “Life with MS” story by forwarding it to Natalie Walsh firstname.lastname@example.org or by contacting her on 07 3840 0823 by Monday 24 April, 2017. Sharing your own personal journey can be powerful and provide invaluable help to people in our community, particularly those newly diagnosed. You might like to: • provide inspiration through your unique story of living positively with MS • share your everyday tips for life with MS and help someone else have a better day • tell us what life with MS is like for you For further information and to read some of the wonderful MS stories shared by others in our community, visit msqld.org.au/site/ms-resources/ my-ms-story Follow our World MS Day social media activities on facebook (facebook.com/msqld), instagram (@msqld) and twitter (twitter.com/msqld).
MS LIFE – AUTUMN 2017
KATIE HELPS OTHERS TO FIND THEIR COURAGE Reflecting back on 2009, Katie Mattin said she may have had MS without realising it, but after noticing on and off symptoms just after her pregnancy she was convinced something wasn’t quite right.
For the first seven years, Katie kept her MS diagnosis to herself, only revealing it to her close family and friends. After relocating to Australia in 2011, Katie landed a role as a weekend announcer on Brisbane’s popular radio station Nova 106.9. In 2016 she became Nova’s morning announcer and on a personal level, felt she had reached a stage where she was comfortable to share her story, utilising Nova’s radio station as a platform. She also signed up to be an ambassador for the MS Queensland Brissie to the Bay bike ride to further share her story, promote the cycling event and to raise money for MS research and services across Queensland. Katie, who has signed on as ambassador for the second year running for the 2017 Brissie to the Bay bike ride said she takes on this role in the hope of helping others who are living with MS to find their strength and courage. "If I had known someone like me when I was first diagnosed, I would have felt much more calm and confident getting my mind around what it means to live with MS." "If I can help someone else find their courage, then it's definitely worth sharing my story." As Katie gears up to ride for a second time, she is encouraging the people of Brisbane and surrounding areas to join in too.
"I was a little terrified last year as I went into it not even owning my own bike! But my eight year old twin girls and I really enjoyed it and we are looking forward to it again this year with my husband." The annual ride has become one of Brisbane’s biggest and best charity bike rides and this year the event is expected to attract over 5,000 cyclists, including endurance riders with the introduction of a 160km Classic (that’s 100 miles!). MS Queensland, along with Katie from Nova, are calling on the Brisbane community to support the 27th annual MS Brissie to the Bay bike ride. Register at BrissietotheBay.com.au
WHAT: MS Brissie to the Bay bike ride WHEN: Sunday 18 June 2017 from 5:30am – 4pm WHERE: Musgrave Park – Cordelia Street, South Brisbane Q 4101 WHO:
Bike riders of all ages and abilities
WHY: Cycling is a fun way to improve your health, keep motivated through the cooler months and help raise vital funds for leading edge research and support services for people living with MS. This year the event aims to raise a sensational $1.5 million. HOW: Join the challenge by riding one of our tailored distances; 10km, 25km 50km, 100km or the newly introduced 160km classic courses. Register at BrissietotheBay.com.au
Image: Katie Mattin gears up for the ride. Image courtesy of Supersport Images, bike from 99 Bikes.
MS LIFE – AUTUMN 2017
At the time of Katie’s diagnosis she was just 25 years old, living in the UK and had recently given birth to twin girls. She remembers feeding one of her daughters at night when her toe went numb; however she didn’t think much of it because it was cold. Gradually Katie’s symptoms progressed and after a misdiagnosis of sciatica, an MRI at the hospital revealed a diagnosis of MS.
Occupational Therapy ND AT MS QUEENSLA
The National Disability Insurance Scheme (NDIS) is rolling out across Queensland and changing the lives of people living with MS and progressive neurological diseases (PND). At MS Queensland, we regularly review our services to ensure we can best help our customers and we’re excited to share these updates with you: > T here is a new identity for our specialised neurological physiotherapy across Queensland; NeuroPhysio. > We have new weekly permanent clinic locations in Toowoomba, Springfield and Ipswich and still have weekly clinics at Dutton Park, Chermside and Robina/Helensvale. The ‘pop up’ clinics for Mackay, Caboolture, Nambour, Kipparing, Cleveland and Logan continue. > MS Queensland has introduced ‘fee for service’ for neurological physiotherapy with private health fund and Medicare (Chronic Disease Management Plan) rebates now available for the first time. ‘Fee for service’ allows us to continue helping customers but will not exclude services for people who cannot pay. Options for financial support can be discussed at the time you request service. > In preparation for the NDIS, our experienced physiotherapists are available to provide oneon-one 30 minute consultations at no cost. In these, we will work with you to identify and express your physiotherapy related goals to your NDIS planner. Our phone and in person consultations are available at any of our clinics. We look forward to connecting with you at your local NeuroPhysio clinic.
Occupational Therapists at MS Queensland assess and work with customers to enable function and continue with activities they like to do, need to do or must do for as long as possible, where they may otherwise have been limited by their condition. An initial consultation involves an assessment of individual function and the environment, including home, work and self-care tasks, level of fatigue, sleep issues and any difficulties with cognition. Further recommendations and the provision of essential information are provided. Ongoing therapy may follow, including retraining or learning new strategies, the use of aids or equipment or the loan of equipment for trial where possible for promoting independence, mobility and safety. MS Queensland Occupational Therapists also run group sessions on a variety of topics, including: • Sleep and fatigue management • Employment and MS • Pain and self-management • Brain health The Sleep and Fatigue Management program is a new seven week program, involving a two hour session running once a week which offers education and strategies for poor sleep and energy conservation. Topics include the science of sleep, importance of rest, body mechanics, activity stations, priorities and standards, balancing your schedule, and review of your sleep patterns.
MS LIFE – AUTUMN 2017
Each session combines a teaching component, a group discussion and an activity to practice. The program will be run by Bel du Bois, an Occupational Therapist and Sleep Scientist at MS Queensland, with many years of experience assisting people with neurological conditions where sleep and fatigue are a problem. Stay tuned for dates and locations of each workshop.
6 MS Queensland Neurophysio team
For further information please phone 1800 177 591 or contact Linda Wilson-Marks on email@example.com
For more information, to register your interest in the workshops or program, or to book an appointment please call 1800 177 591 or email Bel at firstname.lastname@example.org
ANOTHER WORLD FIRST FOR AUSTRALIAN MS RESEARCHERS
Traditionally, distinguishing between MS subtypes and confirming diagnosis has been a lengthy and challenging process requiring an array of tests. But the process looks set to change, thanks to this research. Professor Guillemin explains, “This is a significant discovery because it will facilitate the ability to quickly and simply diagnose the three types of MS and will allow clinicians to adapt their treatment for MS patients more accurately and rapidly”. Diagnosing the different types of MS is important as each subtype has very different outcomes and treatment implications. In addition to a potentially world first blood test, these results may also give very important insights into the mechanism of the different subtypes of MS, and help scientists understand how MS progresses. The initial research concept for this study was funded by an MS Research Australia incubator grant – which are small pilot funding grants given to promising ‘out of the box ideas’. This initial funding allowed the scientists to collate enough data together to secure highly competitive NHMRC funding and a prestigious MS Research Australia post-doctoral fellowship for Dr Lim. This study reflects the high quality and internationally competitive MS research, which is carried out in Australia. Image credit: Carmen Lee, Macquarie University
NDIS & YOU The National Disability Insurance Scheme (NDIS) is already changing lives in Townsville, Mackay, Toowoomba and surrounding areas. If you live in the local government areas of Ipswich, Lockyer Valley, Scenic Rim or Somerset, you’ll soon be able to apply for the NDIS - it opens on 1 July! Not long behind Ipswich is the Bundaberg local government area where the NDIS will be available from 1 October. Don’t miss out! You can prepare for the NDIS by finding out as much as possible about the support and services that will be available through the NDIS, and the process involved for you to apply for them. MS Queensland can help you determine your eligibility, find out how to access the scheme, and most importantly how to prepare for your planning session so you achieve the best outcome for your situation. Get started now by contacting the MS InfoLine on 1800 177 591, email email@example.com or visit msqld.org.au/ndis
MS LIFE – AUTUMN 2017
An international study, led by Macquarie University researchers Dr Edwin Lim and Professor Gilles Guillemin, has discovered the first blood biomarker – a chemical identifier in the blood – for distinguishing the different types of MS. MS is the most commonly acquired neurological condition in young people in the world and its complex and varied nature means treatment decisions and management for each individual can be challenging.
MS LIFE â€“ AUTUMN 2017
PAM'S JOURNEY WITH MS MAKING THE MOST OF LIFE
It was while camping on the Gold Coast in 2010 that Pam started getting tingling in her feet. She thought her GP would tell her she was crazy but instead she was told it could be something significant and was referred to a neurologist, where an MRI confirmed she had MS. Her neurologist gave her some basic information and told her to come back in two weeks once she’d had time to absorb the news, telling her “you’re the same person who walked in the door, you just have MS”. Pam says it took them around a year to get their head around her diagnosis and once they did they started preparing for the future. Her neurologist suggested they do as much as they could in the next ten years, so they sold their family home and moved to a smaller, more manageable apartment. They also planned a trip to Europe and in 2013 spent ten weeks travelling with Pam’s brother and sister-in-law. John says before Pam’s diagnosis the couple “had been living with a lot of one days – one day we’ll travel, one day we’ll spend more time with family, but now there’s a limit to those one days so we want to do it all now.” Pam loves kids, between her job as a teacher aide and having five grandkids, she spends a lot of
time nurturing young minds and playing. Her and her husband John regularly have a house full of grandkids – and they wouldn’t have it any other way. In 2014, Pam made the decision to reduce her work hours in the hope that she will be able to continue working longer if she’s takes things a little easier. She works five mornings a week, giving her the chance to rest before spending her afternoons with her family and grandkids. It’s a balance that helps her continue doing the things she loves the most. For Pam it’s a combination of little things that help her manage her MS – cutting back on work hours, watching what she eats and staying active. Before her diagnosis she had started walking with a friend, however once she found out she had MS she decided she better keep active and now walks every morning. Pam did a couple of fun runs/walks before getting involved in the MS Moonlight Walk a few years ago. Now every year a group of walkers calling themselves the Mt Crosby Cruisers from the school where she works get dressed up and walk to raise money to help find a cure for MS. Pam’s symptoms have not progressed in the seven years since her diagnosis; her neurologist says she is an exception so she likes to tell her husband that she’s exceptional. For Pam and John, MS has prompted them to make the most of life, to travel and spend time with their family while they can.
MS LIFE – AUTUMN 2017
For Pam and John Barry a simple holiday led to a complete change in the way they live their life.
SUPPORTING THE MS CAUSE
S N O H T A M I W S The 2016/17 MS Swimathon season is drawing to a close with swims in Cairns, Mackay, Rockhampton and the Gold Coast being held over the past 6 weeks. One of the wonderful aspects of the MS Swimathon campaign is the ability for people with MS and local MS Support Groups to get involved, not only to swim, but also to help organise the event itself. Across most of our locations, local people step up and take on the load of helping advertise the event and recruit teams; finding local suppliers, sponsors and entertainers; and being our spokespeople in their community.
hard work they do each year. With locations all around the state, there is a Swimathon that you can get involved in – just contact Simon Gregory on 07 3840 0812 to discuss how you’d like to be involved. The final Swimathon of the season will be in Townsville on Sunday 7 May at the Kokoda Memorial Pool. This is going to be a huge event with the recent rollout of Spark and the NDIS creating a buzz in the local community. Jump onto MSswimathon.com.au to register your team – come along and be part of the fun!
MS Swimathons would not be the success they are without people stepping up to take on these tasks and we thank them for all the
MS LIMITED EDITION LOTTERIES Our lotteries are off to a great start in 2017 with the prize combinations of Mercedes-AMGs and luxury holidays continuing to prove appealing. The very first draw of the year sold out well in advance of the closing date.
MS LIFE – AUTUMN 2017
Here’s the very happy winner of that draw picking up their amazing Mercedes-AMG C63 S! We are excited about the year ahead and have a few minor changes planned to ensure that an entry in the MS Limited Edition lottery remains the hottest ticket in town. Get your tickets now at mslimitededition.com.au
The Big Dinner Party is held year round - so if right now doesn't suit you, perhaps consider hosting a dinner, high tea or even a BBQ later in the year. Remember, your dinner party can be as big or small, elaborate or simple as you like. The key is to register it today and join the movement to beat MS! PREFER AN OUTDOOR EXPERIENCE? If you would like to challenge yourself further, you could consider raising funds for research through a mass participation event in Queensland. Team Cure MS is entering teams into the following events, so join us and help beat MS! There are currently four events open for registration: • Tough Mudder • Noosa Ultimate Sports Festival • Sunshine Coast Velothon bike ride • City2South By signing up to these events you can raise funds for MS via your own online fundraising page. We will be there to support you along the way! If you have any questions about the Team Cure MS campaign, please contact Clancy Feuerriegel on 07 3840 0887 or teamcureMS@ msqld.org.au REGISTER YOUR EVENT AT TEAMCUREMS.ORG.AU 20161020 MS Qld 252 x 87 SUMMER OL.pdf 1 20/10/2016 9:26:34 AM
160KM CLASSIC BIKE RIDE
Registrations are open for the 2017 MS Brissie to the Bay bike ride to be held on Sunday 18 June 2017, and with five tailored distances, riders from all walks of life and skill levels will be able to hop on their bike and make a difference for people living with MS. New in 2017 is the 160km Classic course – that’s 100 miles! The 160km Classic course starts at Musgrave Park and heads out to Wynnum, continuing along the picturesque esplanade of Manly, Wellington Point, Cleveland and down to Redland Bay. Riders must be over the age of 18 to participate and should be regular cyclists (not recommended for beginners!). All 160km Classic riders receive a complimentary 160km jersey, valued at $99. MS Queensland customers receive free entry in the ride so why not give it a go? Call 07 3840 0828 for more information.
MS LIFE – AUTUMN 2017
Team Cure MS is continuing to gather momentum as people within the community learn more about how they can get involved to help find a cure for MS. All funds raised as part of this campaign will go towards research projects within Australia. One of the ways that you can get involved is by hosting a Big Dinner Party!
SUPPORTING THE MS CAUSE
HOST A BIG DINNER PARTY!
TAKING CONTROL OF MS
An MS diagnosis can be confronting, confusing and shocking. Too often we hear that newly diagnosed people turn to Google searching for answers. Unfortunately those searches leave most filled with fear and frustration. That was the confronting reality for Jillian Kingsford Smith. Jillian was living a fast paced life with a demanding career when she was diagnosed with MS at the age of 42. “The first thing I did was Google ‘MS’ and it was the worst thing I could have done,” she said. “There were a million entries about the topic but nothing that gave me what I was looking for.” Jillian recognised there was a need for practical, positive and constructive information about MS. With an international journalism career and determination to help others with their MS journey, Jillian wrote ‘Taking Control’. The book shares a collection of real life stories from people around Australia who have been diagnosed with MS. It demonstrates courage, inspiration and resilience. Tim Ferguson (Entertainer) and Paul Pisasale (Mayor of Ipswich), both well-known and highly respected amongst the MS Queensland community, feature in the book along with many other touching stories. MS LIFE – AUTUMN 2017
‘Taking Control’ is a must read for anyone living with MS. It contains practical advice and over 100 tips for anyone living with a chronic illness. “I hope health professionals and family members will also pick up the book and read it. Life changes for anyone living with MS and this collection of stories demonstrates how to find courage and inspiration while facing change and uncertainty.” said Jillian. ‘Taking Control’ became an Amazon best seller just weeks after its release. Jillian then went on to
write its companion resource, ‘Taking Control Together’, for the carers and supporters of those with MS. The book includes the journeys of spouses, parents, children, friends and even professional carers. It is a guide that gets to the heart of how you can overcome feeling isolated or alone when caring for someone with a chronic illness. The stories in ‘Taking Control Together’ are a testament to the prevailing human spirit, where we witness people often digging deep to find an inner strength they didn’t know they possessed. This book guides the all-important support network in how to look after their mental, emotional and physical well-being whilst supporting someone with a chronic illness. ‘Taking Control’ and ‘Taking Control Together’ are available via take20stories.com in paperback and kindle versions. Both are a must read for anyone living with MS, their loved ones, carers and health professionals. We look forward to sharing the release of Jillian’s third companion book in the 'Taking Control' series, which will document the remarkable stories of MS nurses from around the world.
“TAKING CONTROL IS THE BOOK I WISH I’D BEEN GIVEN WHEN I WAS DIAGNOSED WITH MS 10 YEARS AGO. IT TELLS THE REAL STORY OF MS – PEOPLE SHIFTING THEIR PRIORITIES AND DOING ALL THEY CAN TO GET ON WITH ENJOYING LIFE.” LINDA DX 2002
ALBANY CREEK APARTMENTS
ON TRACK TO COMPLETION! MS Queensland is excited to announce that the Albany Creek apartments, a partnership of MS Queensland, Youngcare and the Queensland Government, is on track for completion this month. The site at Leitchs Road, Albany Creek has been provided by the government, which is also providing a $1 million contribution through the Elderly Parent Carer Innovation Initiative (EPCII), which aims to find new housing solutions for people with disabilities currently living with elderly parent carers”. The stunning new apartments will be home to eight young people living with MS or other progressive neurological diseases with high care needs. Their homes will have innovative technologies where lighting, automated doors, entertainment systems, beds and blinds are all controlled with the touch of a fingertip, helping our new residents to control their apartment and surrounding areas. The apartments are a new two-bedroom design, providing each resident with the added flexibility of an additional guest room or study. There is a housing crisis in Queensland and finding age appropriate high care housing for people living with MS and other progressive neurological diseases is extremely difficult. Many people have little choice but to move into aged-care accommodation as a last resort. Right now in Queensland there are more than 300 people living with MS or other progressive
neurological diseases under the age of 65 who live permanently in residential aged-care – this is just not good enough and we’re determined to solve this. A Community Open Day for the new Albany Creek apartments is planned soon and we’ll share all of the exciting details with you in the near future. This inspiring development is another step towards creating a future where every young person with high care needs has the opportunity to choose where and how they live their lives. For more information on the MS Queensland housing strategy, please contact Karen Quaile, Director of Services on 07 3840 0840 or karen. firstname.lastname@example.org or visit msqld.org.au/site/ourwork/housing
To solve this, MS Queensland will partner with carefully selected health professionals across the state to create a reputable alliance with suitably qualified health professionals – NeuroPartners. NeuroPartners are providers of high quality evidence-based services to people living with MS and other progressive neurological diseases (PND). Through NeuroPartners, customers will have access to appropriate and safe services and venues with the strong support and guidance of MS Queensland. MS Queensland is excited to welcome Active Physiotherapy Mackay as our first physiotherapy NeuroPartner. Danielle, Suz, Ryan and Claire highly value communication and compassionate care. They
will supply timely correspondence with you, your general practitioner, MS Queensland and your care coordinator and supply very clear exercise instructions or advice. Suz has a special interest in vertigo and vestibular rehab; Dani in bladder/bowel and sexual dysfunction; Ginny has a special interest in shoulders and chronic pain and Ryan and Claire in mobility, exercise, balance, hydro and home visits. For more information about your local NeuroPartner please contact Alexandra Osadchuk at MS Queensland on 1800 177 591 (cost of a local call) or direct 07 3840 0851 or via email email@example.com
MS LIFE – AUTUMN 2017
The MS Queensland Physiotherapy team is passionate about ensuring that high quality neurological physiotherapy solutions are available for people who require these services, no matter where they live in Queensland. As a result, we've been working to expand our reach to customers living in regional communities. Unfortunately there are a limited number of physiotherapists to cover all of Queensland.
MY MS STORY DOESN'T STOP ME
en MS doesn't stop me... whilst it has changed some of the ways I live my life, I don't ldr i h rc think of it as stopping me from doing the things I want to. I simply think of it as the d he Merril an way my body now operates. For example, it is quite a few years since I have danced, eaten with chopsticks, and put together flat-pack furniture; all of which I loved, but my balance and fine motor skills just aren't up to these activities. Additionally, because standing and walking are 'not my thing' and I work at a large university campus, I use an electric wheelchair to get around. It's much faster than walking, although I do have to be vigilant because most people don't look where they are walking as their eyes are glued to their phone screens! I use a light, collapsible wheelchair which is also excellent for travelling which I do a fair bit of for work. It has crossed the breadth of Canada, USA and many parts of Australia. I don't sit in it much, but rather use it for mobility even if that means driving from one chair to the next. I love my job as a teacher and researcher. To comfortably give my lectures, I have worked out that if I park my wheelchair sideways behind the lectern, I can perch on the armrest with a small cushion for comfort. That way, I don't get tired nor worry about losing my balance and can focus on what I am saying. The main thing I have learned about my body is to be realistic and plan the way I do things. At home, I use my walker and do regular exercise so that I maintain my fitness and muscle strength. We have also made a few modifications to our home (e.g. wider doorways,
an accessible bathroom, and a lovely path through the garden that leads up to the back door meaning I don’t have to use the stairs to get into the house). To work out if I should take my wheelchair or walker to places where there may be stairs, I look up Google street view online. I generally utilise my scooter, rather than my wheelchair, to get around my local community as this allows me to navigate any broken footpaths. Living with MS has taught me a lot and afforded me opportunities that I wouldn't otherwise have had. My family and I (including my children’s partner’s and family members) had a lovely time doing the MS Moonlight Walk in 2016. Because I chose to stop driving a few years back, I often end up going places with others and spending more time with them. I can also advise others on public transport options, as I know it all so well! I meet others that I wouldn't have otherwise met. I am much better at planning than I was prior to my MS diagnosis, and I am more organised. I appreciate the people around me; my fabulous friends and family, and I don't take things for granted. I have a stronger sense of who I am, the community I am part of, and that I am valued and loved. MS hasn't stopped me being me.
MS QUEENSLAND IS PROUD TO BE GIVEN THE
CHARITY TICK OF APPROVAL! Recently the Australian Charities and Not-for-profits Commission (ACNC), the independent national regulator of charities, introduced a welcomed Registered Charity Tick. MS LIFE – AUTUMN 2017
This tick of approval is a visible symbol of ACNC registration for prospective and current supporters of charitable organisations identifying if the charity is transparent, accountable and meets the ACNC’s governance standards and reporting requirements. MS Queensland is proud to be registered and given the charity tick of approval. This symbol provides the public with trust and confidence in the MS information, education, treatment, care and support we provide across Queensland.
The Registered Charity Tick will be used on MS Queensland’s printed and digital platforms. Members of the public can check out the Register to find out more details on registered charities they wish to support.at acnc.gov.au/charityregister Helping to enhance public trust and confidence in registered charities
DECISION MAKING QUESTIONS WITH TIM
Shared decision making (SDM) is the process of clinician and patient jointly participating in a health decision after discussing the options, the benefits and harms, and considering the patient’s values, preferences and circumstances. SDM is seen internationally as a hallmark of good clinical practice, an ethical imperative and a way of enhancing patient engagement and activation.
This shared decision making should be ‘fluid’ – you may, in some situations, want to be told what to do, in others tell your clinician what you want to do – but for the most part you want to clearly understand your options and collaborate with your health care team.
5. Coming to a shared decision (perhaps at a later consultation if more time is needed). Your clinician has expertise in their area of training and specialisation. You have expertise in you. Questions you may wish to ask:
1. Listing the options for management (usually including the option of ‘doing nothing’) 2. Setting out the benefits and harms of each option, together with their likelihoods 3. Exploring your individual preferences and circumstances 4. Providing where possible relevant, accurate information/resources
1. What will happen if I wait and watch? 2. What are the test or treatment options I have? 3. What are the benefits and harms of each option/treatment?
For further information on SDM, visit www.nhmrc.gov.au/health-topics/talking-yourhealth-professional
MS LIFE – AUTUMN 2017
Your clinician – be that a doctor, nurse, physio, case manager etc. should be:
PWMS SUPPORT GROUP UPDATE Fabulous start to the year with the Swimathons finishing on a high note… not only a combined fundraising success, but enthusiastically supported and well organised thanks to Simon, Clancy and the many volunteers.
e g n e l l a h C e l c y MS C
If you haven't sent in your Living Positively Story, please do so. The story does not have to be about you, it can be of another person you know living with MS who inspires you and would inspire others too. Please forward these to Natalie Walsh. All contributions will be enthusiastically read by Ipswich Mayor, Paul Pisasale, our MS Queensland CEO, Lincoln Hopper, Natalie Walsh and myself. Nominees will be invited to an afternoon tea with the Mayor and an invitation to Government House in May, in celebration of World MS Day, will be extended to one of our Living Positively authors. All your stories will be published throughout the year as well.
The MS Cycle Challenge is a way to enable people living with MS who are unable to cycle on open roads to get involved with our biggest fundraising event of the year, the MS Brissie to the Bay bike ride, held on Sunday 18 June 2017. It is a terrific opportunity to allow you to participate in a statewide physical challenge.
Your personal stories mean a lot even if you do not think so. Every MS’er has a different but similar journey, and it is not until you hear about another person’s day to day goals, achievements and their strengths to overcome, that you realise you are not alone.
This year’s MS Cycle Challenge runs from Monday 29 May 2017 to Sunday 18 June 2017 as a lead up to the MS Brissie to the Bay. The challenge is open to anyone in Queensland who has access to a MOTOmed, stationary cycles and arm cycles, either in your home, gym or the Physiotherapy Clinic you attend.
Finally, we have a really important survey to complete… it is brief and it is to benefit all of us who are concerned about power usage for our cooling and heating needs.
If you wish to fundraise, let your family and friends know that you are participating and get them to support you as you cycle for either a time or distance challenge.
MS LIFE – AUTUMN 2017
This is a great way for you to focus on increasing your aerobic fitness during the challenge and set goals for yourself, so start peddling and have some fun while keeping fit! For more info or to get involved visit msqld.org. au/site/get-involved/ participate/ms-cyclechallenge
Fun fact: did you know that The energy required to cycle at low to medium speeds is roughly the same as the energy required to walk.
16 Image: Helen Flaherty participates in the 2015 MS Cycle Challenge
This is a new survey and we NEED YOUR VOICE to make changes with the Government on this matter. Please go to the link provided here and take two minutes of your time to fill out the simple questions: surveymonkey. com/r/energy2017 Warm regards to all, Jenni
Advocacy Natalie WITH
Help us share the hard facts about your energy bill during summer.
Unfortunately, for many in our community they cannot access these targeted rebates. MS Queensland’s work continues; particularly looking at access to renewable technology, rebates and a single national medical rebate.
In order for us to share the hard facts with the Queensland Government about the cost of energy to you, and to assist in informing MS Queensland’s policy work we need you to complete a short survey by the end of April. We ask that you please complete this survey to provide further insight into the impacts of heat and energy usage on you. Please visit www.surveymonkey.com/r/energy2017
If you have any queries, please do not hesitate to contact Natalie Walsh at Natalie.firstname.lastname@example.org or 07 3840 0823.
TOGETHER WE WILL BEAT MS Looking for a way to raise money to support MS research? Whether it’s hosting a BBQ, a golf day, high tea, or signing up to an event such as Tough Mudder or City2South, you can raise funds through your own online fundraising page and we’ll be there to support you along the way!
REGISTER YOUR FUNDRAISER NOW! VISIT TEAMCUREMS.ORG.AU
MS LIFE – AUTUMN 2017
We hope we have seen the last of the heatwave temperatures that have been felt across our State during the past few months. A key advocacy priority for MS Queensland is the non-discretionary need to use energy for people living with MS and assistance to alleviate the financial burden for people with MS who incur large energy bills. Whilst there are rebates available (see msqld.org.au/site/msresources/energy) they do require you to have a pensioner concession card, healthcare card or Queensland Seniors Card.
NDIS NOW IN TOOWOOMBA AND SURROUNDING REGIONS
With the National Disability Insurance Scheme (NDIS) now available in the Toowoomba area, additional support is being provided for locals living with disabilities, their families and carers. Elizabeth has lived with MS since 2002. After her diagnosis, Elizabeth was advised to contact MS Queensland. She made that phone call 15 years ago and has never looked back! Initially hesitant and unsure about the NDIS process, Elizabeth sought the support of MS Queensland Service Coordinator, Janice Wheeler (pictured).
S E C R U O MS RES LIVING WELL WITH MS Many people with MS experience bladder or bowel issues, from mild incontinence or constipation to more severe problems. The symptoms are often difficult to talk about and can affect all areas of life. With the right information and support however, incontinence issues can be effectively managed in order to maintain a healthy lifestyle. Continence Care This information sheet outlines how MS can affect bladder and bowel function, what to do and how to manage symptoms. It also provides a directory of assistance.
"Janice helped me with pre planning and getting ready for the NDIS and thankfully made the process easy. If I had not registered when I did, I may have missed out given I’m close to 65.
"Janice then came around to my place and sat with me as the telephone interview was conducted for my NDIS plan. Her support has been brilliant. "Janice assisted in answering questions and provided me with the necessary support to reach the most suitable arrangement." Prior to the NDIS, life was hard for Elizabeth and her husband, who is also her carer. After securing her NDIS plan, Elizabeth now has someone coming in weekly to assist with the housework as well as temporary support with the gardening whilst Elizabeth’s husband is recovering from medical treatment. "Through the support received from MS Queensland and the NDIS, the tension and stresses my husband and I felt as we were trying to keep on top of everything is now alleviated. The help we have received has freed me up to be able to enjoy my life." MS LIFE – AUTUMN 2017
6369 Bladder front cover final A-W.indd 1
Managing Your Bowels This booklet aims to give you an understanding into why bowel problems can be a part of MS and provides information and strategies to help you to successfully manage bowel problems.
If you’d like to talk about the NDIS and what it could mean for you, please contact us today on 1800 177 591 or email@example.com
6369 Bowel front cover final A-W.indd 1
Managing Your Bladder This booklet provides further insight into why bladder problems can be a part of MS and outlines a practical approach to help you successfully manage bladder problems. This guide also provides sources of help and support.
For a copy of these resources or to seek further information please contact our InfoLine on 1800 177 591 or go to our website msqld.org.au/site/ms-resources
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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 firstname.lastname@example.org
MS Swimathon Townsville
18 JUNE MS Brissie to the Bay
MS Swimathon Hervey Bay
MS Swimathon Sunshine Coast
MS Moonlight Walk
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
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 $
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.............................................................
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On the cover of this edition is Pam who lives positively with MS. Pam was determined not to let her diagnosis impact her job as a teacher ai...
Published on Apr 24, 2017
On the cover of this edition is Pam who lives positively with MS. Pam was determined not to let her diagnosis impact her job as a teacher ai...