MSLIFE. SPRING 2014
MS QUEENSLAND’S PREMIER MAGAZINE FOR PEOPLE LIVING WITH MS
ANNUAL
CONFERENCE MS emerging treatments – hope versus risk
KATE’s MISSIOn for ms support:
How she’s bringing young people with MS together
pg. 05
pg. 12
pg. 15
pg. 18
Vitamin D MS prevention trial
Upcoming MS Moonlight Walk
MS Life e-version now available
One year on – the NDIS
Attend LETTER FROM THE
EDITORS Dear readers, Welcome to the Spring edition of MS Life! This edition features young Kate Casey who lives in Townsville and was diagnosed with MS at the tender age of 18. She had just started university and had her whole life ahead of her. Fast forward almost ten years and Kate is living with MS as best she can. Just recently she decided to set up a MS group for young people living with MS, a first for North Queensland. She’s focused on helping young people newly diagnosed with MS to see that it doesn’t have to be “the end of the world.” In Kate’s words “you have to listen to your body but it doesn’t mean you have to let the disease rule your life.” You can read more of Kate’s inspiring story on page 10. This year’s Annual Conference and AGM is on Friday 28 November, once again at the Southbank Institute of Technology in South Brisbane. While attendance is free, places are limited so please make sure you RSVP as soon as possible so you don’t miss out. Details of how to RSVP are in the next column. As always, if you have any feedback about MS Life or have a story idea please get in touch by emailing us at mslife@msqld.org.au Kindest regards, Cassie and Melanie Editors, MS Life
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THE MS Queensland Annual Conference and AGM
28NOv
MARK YOUR DIARY FREE EVENT FRIDAY 28 NOVEMBER 2014 10:00am start to 2:00pm
Join us at the Southbank Institute of Technology, South Brisbane for the third annual MS Queensland Conference and AGM. This year’s program features guest speakers Dr Ken Packenham from the University of Queensland and Valmae Rose from Future by Design and an exciting new panel discussion on ‘MS emerging treatments – hope versus risk’. On this panel, a number of MS experts from across Australia will be brought together to shed light on both the ‘hope’ and ‘risks’ associated with current and emerging treatments like the Epstein-Barr Virus (EBV) and Autologous Hematopoietic Stem Cell Transplant (HSCT), and debate the validity and future of these treatments. The program also includes the Annual General Meeting (AGM), lunch and refreshments. The Southbank Institute of Technology is a fully accessible venue with catering provided suited to dietary needs. Parking and drop off access is via Ernest Street and public transport via train and bus is located close by. Registration is essential to secure your attendance. Numbers are limited and will be allocated on a first come first serve basis so get in early to avoid disappointment. Please RSVP by Friday 7 November to daz.davies@msqld.org.au or phone 07 3840 0804.
Southbank Institute of Technology, Ernest Street South BRISBANE If you’d like to stay in touch with MS Queensland’s activities, events and physiotherapy programs visit:
www.msqld.org.au
Want an MS question answered? If you have an MS-related question to ask Tim, our Manager of Specialist Education, please email Tim at mslife@msqld.org.au
To make a donation to MS Queensland or for more information on what we do please email mslife@msqld.org.au or call
FROM THE
After looking things over, the on-call plumber (carrying an enormous bag of tools) went straight to work. After some investigation, he reached into his bag, pulled out a tiny hammer and with great focus and precision gently gave something a single tap. Instantly, hot water began to flow. He carefully put away his hammer. Problem solved. A week later, I received a strange bill for $1.00 in the mail. It read: Tapping with a hammer................$1.00 Knowing where to tap........... priceless Of course this funny story isn’t true, but it reminds me of times I have relied on experts to help me overcome challenges in my life. Sometimes these experts made fixing things look so simple – but in truth, I was just relieved to have someone who knew exactly what to do! At MS Queensland we are striving to be the “first-choice for MS information, education, treatment, care and support” across Queensland. Simply put, our ambition is to become experts in helping people living with multiple sclerosis. So I hope you enjoy and benefit from this edition of MS Life, jam-packed with expert and helpful information and inspirational stories all put together to help people living with MS to get the best out of life!
COVER STORY PG 10 Kate’s mission for MS support PAGE 2–3 Letter from the Editors Attend the MS Queensland Annual Conference and AGM From the CEO PAGE 4–5 MS Webinar success Vitamin D Health and community professionals come together PAGE 6–7 Employment and MS Working with MS support groups Energy update PAGE 8–9 Integrating exercise Toowoomba's Baillie Henderson pool reopens The importance of cardiovascular exercise PAGE 10–11 COVER STORY Kate's mission for MS support PAGE 12–13 Events that help people living with MS PAGE 14–15 Client in focus Clients having their say True champion defying the odds MS Life e-version
Best wishes,
PAGE 16–17 'READY' resilience program success MS cycle challenge How Jenny lives positively with MS MS resources
Lincoln, CEO
PAGE 18–19 Adocacy with Natalie Questions with Tim People with MS update PAGE 20
Acknowledgement: We wish to thank Kate Casey for the use of her image on the cover of this publication. Photo courtesy of NewsPix (featured in the Townsville Bulletin).
MS Moonlight Walk
MS LIFE – SPRING 2014
In the end it only took 10 seconds to fix, but it needed an expert to do it. Of course I only discovered the problem of having no hot water right when our busy household was lining-up for early morning showers (and in mid-winter I might add!).
CONTENTS
CEO
3
MS WEBINAR
SUCCESS W
e’ve received fantastic feedback from our clients and members who thoroughly enjoyed our MS Webinars covering topics from ‘newly diagnosed with MS’ to ‘cognitive and emotional changes in MS.’ Presented by our MS Nurse Practitioner and Manager of Specialist Education, Tim O’Maley, our MS Webinars are designed to be interactive and allow you to ask Tim questions during and after the webinar.
What an excellent initiative. That’s using technology as it should be used! It’s good not only for people in the far reaches of the State, but also for those of us closer to Brisbane. Deciding to attend a face-to-face seminar is often affected by venue, time, weather, how you’re feeling…a multitude of factors can mean that even with the best of intentions you don’t go.” Woody Point MS Webinar participant.
MS Webinars are targeted to meet the specific needs of our clients and the MS community. It allows you to view and interact with us from the comfort of your home or workplace. The webinars are also available online afterwards so you can re-watch sessions, review the notes and download the presentation. You can also share this with friends and family members to watch and learn from the webinar.
It was great to get information in what seems like a really easy manner to address a lot of people without the additional expense of travel and accommodation. Well done.”
With over 170 people registered for our webinars so far, here’s what a few of our participants had to say about their experience:
For more information on our MS Webinars please contact Tim O’Maley on tim.omaley@msqld.org.au or phone 07 3840 0855.
Mackay MS Webinar participant.
Ideas move more
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SErvO POwEr ASSiST
Up to 55km range, SWL 150kg, 2 programmes – 10 levels, airport mode, no stud axles, includes remote.
✔ support cardiovascular functions ✔ warm legs with less or no pain ✔ ease spasms increase mobility
MOTOmed
Passive/active exercise. Assist in your own rehab.
PHONE 1800 994 408 www.abilityinmotion.com.au
admin@abilityinmotion.com.au
MS prevention trial up and running and progressing well
L
ow levels of Vitamin D have been shown to be associated with an increased risk of developing MS. Low levels of Vitamin D can be found in people with little sun exposure and it is surprisingly common, even in Australia. Despite widespread advice for people with MS to take Vitamin D supplements, there is no evidence yet from properly designed clinical trials that Vitamin D supplements can reduce the impact of MS or even what the correct dose should be. Multiple Sclerosis Research Australia is funding and coordinating the ‘PrevANZ Vitamin D MS prevention trial’ to determine whether Vitamin D supplementation can prevent or delay a diagnosis of MS in people at high risk of developing the disease – targeting people who have recently experienced their first episode of symptoms suggestive of MS. MS Queensland and other MS Societies around Australia, together with other donors, are supporting MS Research Australia to fund this trial. We all think it is vital to obtain clear evidence on the benefits that might be expected from Vitamin D supplementation for people with MS and the safety of different doses. If found effective, oral Vitamin D supplementation could provide a relatively low cost therapy for people at risk of developing MS. Over the last year, all preparations for the trial have been completed and the trial is now running smoothly at 20 locations around New Zealand and Australia, including the Wesley Research Institute in Brisbane and the Gold Coast Hospital here in Queensland. For more information visit on the trial please visit www.mstrials.org.au/PrevANZ-Trial
come together on THE COAST
W
hile we provide a range of information for people living with MS and their families, another important group of the MS community that we provide information for is healthcare professionals. Making sure your local physiotherapists, nurses, occupational therapists and other community service providers know and understand MS, is vital to ensuring people with MS are well cared for in the community. Recently on the Sunshine Coast we invited healthcare professionals and service providers in the area – those working with MS and those who have interest in learning more about it – to a free information session run by our team. This was facilitated by our local Regional Service Coordinator, Tasman Saywell who put a lot of work into promoting the day and coordinating our staff to work on the program with him. The attendance of over 50 healthcare professionals on the day demonstrates the strong interest we have in the region. It was a big ‘brain dump’ of information for those attending but they gained a lot of benefit. Our Manager of Specialist Education, Tim O’Maley, gave an overview of MS, an update on current MS research and treatments available for people, and an in-depth understanding of the complex symptoms of MS. Our Clinical Psychologist, Aart Simons, spoke to the group about the psychosocial impact of MS and Senior Physiotherapist, Stephen Ryder, discussed the benefits of incorporating exercise and physiotherapy into the routines of people with MS. The day ended with Tasman Saywell giving an overview of the support and services we can offer people with MS. We are committed to raising awareness of MS in the wider healthcare community and hope to be able to deliver more education sessions like this one in the future. If your healthcare professional would like to learn more about MS and its symptoms, please direct them to our InfoLine on 1800 177 591 or our Online Resource Centre www.msqld.org.au/ msresources/healthcare-professionals
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Vitamin D
Health and community professionals
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Employment and MS V
eva Pocock, a client of ours, has worked at the Cribb Street Childcare Centre for seven years. While she’s been living with MS for more than 15 years, Veva chose not to disclose her diagnosis to her employer until after four months; when she was comfortable and confident in her new workplace. Late last year, Veva’s employer Bernadette decided that it was time to get in contact with MS Queensland and see what resources and information sessions were available so she could further support Veva, longer-term.
Veva and her employer Bernadette
After visiting our website, Bernadette came across our ‘Working with MS’ workshops and decided to attend one with Veva. After the workshop, an Employment Options support worker assessed Veva’s workplace and offered further advice on ways to improve, and better facilitate, her at work.
Employment Options then worked with Bernadette to implement workplace changes. These included extending handrails in various spaces of their two level building to assist Veva with using stairs; implementing a change table with hydraulics so Veva doesn’t need to lift the full weight of the children; purchasing cooling vests and neck packs that can be left in the workplace fridge; and purchasing two chairs with hydraulics that allow Veva to sit close to ground level during nap time with the kids, without having to frequently move between the ground and standing. Not only did our workshop facilitate the relationship between Veva’s employer and Employment Options, it also provided Veva with the information and tools she needed to ensure she’s financially set up for her future – whether that be after retirement or in the event that she has to leave the workplace early.
Looking at Veva, her MS isn’t improving but she’s able to maintain employment. She’s said in the past that once she leaves this role, she knows that her MS will go downhill. Her job gives her a sense of fulfillment and purpose and I wanted to find out how I can continue to support her to do what she loves."
Bernadette, Cribb Street Childcare Centre.
More information
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If you would like to know more about our ‘Working with MS’ workshops please contact our InfoLine on 1800 177 591 or visit our website at www.msqld.org.au for employment resources.
SUPPORT GROUPS
M
S Queensland has a number of MS Support Groups located across the State. Each of these groups, with our support, function in their own unique way – social, the spirit of fun, friendship, self-help – but one latest development has been the rise in ‘Working with MS’ support groups. Our services staff are often asked “Should I disclose that I have MS to my employer? If I’m employed at the time of my diagnosis, what responsibilities does my employer have to assist me and make modifications to my workplace if required?” With employment being at the forefront of the minds of many people living with MS, it’s great to see people connecting with other locals in their area to reach out and not only share experiences about employment, but also create friendships. One of our clients, Kellie Carpenter, has recently started a ‘Working with MS’ support group on the Sunshine Coast. Diagnosed with MS 16 years ago, Kellie went from running her own business to being unable
to work. Now happily in her role working at STEPS, an employment service provider for people with disabilities, Kellie wants to connect with other locals living and working with MS to share, laugh, inspire and create friendships. “It’s been wonderful to see the group exchanging contact details, stories and experiences and you can’t help but feel a sense of understanding and respect for each other. It’s amazing how people from all different backgrounds, levels of ability and how long they have been diagnosed can come together as one and support each other. I couldn’t have anticipated the direction of the group any better when I used the words laugh, share, inspire and create friendships to promote the group.”
update
T
he energy market is changing on both a national and State level – these changes may impact your energy bill. One way you can keep up with some of the changes is by understanding your energy bill: • not just looking at the ‘due amount’ but understanding the tariffs and fees; • understanding your electricity usage and comparing it with others in your area; • reading information about switching contracts and how it works; and • knowing you can choose between plans and retailers could save you money. Visit an independent website such as the Queensland Competition Authorities http://comparator.qca.org.au so you can feel confident that you have the right energy choices for your home. And don’t forget, the energy retailer you are with now is there to help so please ask them!
If you’d like to connect with locals working with MS in your local area, why not start your own ‘Working with MS’ support group? For more information please contact your Regional Service Coordinator or our InfoLine on 1800 177 591.
MS LIFE – SPRING 2014
MS
WITH
WORKING
energy
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INTEGRATING EXERCISE
Does the thought of doing daily exercise make you groan? Are you starting to think “I’m too tired to exercise” or “I will look silly!”?
into your day
O
ur bodies are made to move and they work best if they move frequently. This doesn’t mean running a marathon every day. Tiny amounts of movement can add up. The more you move, the more energy you will have to do more. A health professional can advise you as to the frequency and intensity of exercise that would suit your body and your MS symptoms. By starting with small changes and slowly increasing the time you spend exercising, you can learn to think of exercise as not just something to be ‘ticked off’ your to-do list, but more about moving a bit more, to feel a bit better! If you spend most of your days sitting, you might find squeezing a rubber ball helpful in maintaining your grip
strength. You might try tapping your feet to music to keep your calves loose and foot muscles strong. If you’re mobile, perhaps you could add ten minutes of walking round the house, some squats while holding onto the kitchen bench, or an activity based video game like the Wii – this is all added movement. To help keep yourself motivated make sure what you’re doing isn’t too time consuming and it’s fun. And don’t forget to keep these new movements going. Movement is the best medicine around! For more information on exercise and MS please visit our website www.msqld.org.au or contact Linda Wilson-Marks from our Physiotherapy Department on 07 3840 0841.
Note: check with a healthcare professional before commencing any new exercise or movements that your body is not familiar with.
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Toowoomba’s Baillie Henderson pool reopens
T
he closing of Toowoomba’s Baillie Henderson Pool three years ago was heartbreaking for people living with MS in the region who relied on the pool for strength and exercise. It’s not surprising that news of its recent reopening was met with relief and joy by local residents.
Under the care of the new pool owners who are passionate about developing a healthy community lifestyle, the pool is experiencing a fast growth in visitors. Its disabled access means that it’s also accessible to everyone in the community. Toowoomba’s MS community have known the varied benefits of aqua exercise for years, and rallied together with Toowoomba residents to have the pool reopened; including meeting with a State Member of Parliament to secure the use of the pool again. Since closing down, the facilities have been refurbished into a modern, first-class indoor pool and
The importance of
exercise
T
o achieve and maintain a healthy weight and all-round good health, The Heart Foundation recommends at least 30 minutes of moderate-intensity physical activity on most days of the week. This is regardless of your body weight or shape. Cardiovascular exercise is any type of exercise that increases the work of the heart and lungs. You should be able to speak and exercise at the same time to achieve the correct level of exertion and you could be sitting, standing, or moving to achieve this. Just like any exercise, there should be a period of warming up your muscles, some stretching, and making sure you’re keeping your body hydrated with water.
Cardiovascular health is more important than any other single factor in preserving and improving learning and memory. Thomas Crook, Ph.D temporary relief from depression and anxiety better sleep stronger heart and lungs more confidence about how you feel and look more energy
There are a number of ways to get your heart and lungs working – sitting and punching a fixed target, throwing balls, or ‘rowing’ with a noodle in the pool. Walking, cycling, swimming, dancing and stepping activities all require a level of strength and balance but are also great ways to get the heart and lungs exercising a bit harder.
reduced risk of heart disease and some types of cancer
Cardio exercise doesn’t mean you have to join a gym or buy expensive clothes, but will mean you’ll feel better... and we can all do with that!
Walking or cycling for at least
For more information on exercise and MS please visit our website www.msqld.org.au or contact Linda Wilson-Marks from our Physiotherapy Department on 07 3840 0841. Note: please check with a healthcare professional before commencing any new exercise or movements that your body is not familiar with.
30 minutes
a day is associated with a reduction in cancer risk Older people can benefit from exercise that helps to maintain their balance and flexibility
gymnasium with ramp access into the pool, support bars below water level, and disabled toilet and shower facilities.
legs. After just one year of the pool being closed I noticed my legs becoming weaker.”
Chairman of the Health Board for the Darling Downs Hospital Mike Horan said “it’s a fantastic facility that is probably one of the best indoor pools in the city.”
For more information on exercise and MS please contact Linda Wilson-Marks from our Physiotherapy Department on 07 3840 0841 or visit our website www.msqld.org.au
We recently spoke to one of our Toowoomba clients who is thrilled to be back in the pool after noticing the strength in her legs deteriorating over the time that it was closed. “Over the years I had been going to the pool three days a week and by doing so I was able to keep strength in my
MS LIFE – SPRING 2014
cardiovascular
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cover story
Kate at Seaworld
mania
as Kate in T
MS LIFE – SPRING 2014
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Kates'
mission
ownsville’s Kate Casey’s MS journey began nine years ago when she started experiencing chronic dizziness. She was just 18 years old, had started university and had her whole life ahead of her. The possibility of having MS was something that had never crossed her mind. “It came as a shock. MS was the last thing I thought it could be.”
Kate admits she knew very little about MS prior to her diagnosis and pictured spending the rest of her life in a wheelchair. For Kate, an active teenager who played squash, had a strong focus on study and loved spending time with friends, this was a terrifying prospect. After adjusting to her diagnosis by learning more about MS and how to manage her symptoms, Kate’s outlook on life completely changed. She decided MS wouldn’t stop her living her life; sure she would have to make some lifestyle changes but the whole world wasn’t going to stop. “Being diagnosed with MS was a shock, but when I got my head around it, I realised it wasn’t the end. Some days I am tired but I just say to my MS ‘OK, we will still do what I want to do but we will just do a bit less of it. You have to listen to your
body but it doesn’t mean you have to let the disease rule your life.” Not only has the 27 year old continued to work full-time and socialise like any other young adult, she has also achieved her goal of graduating from university with a Bachelor of Information Technology with Honours.
terms with; especially when young people don’t often have a lot of experience with life-altering events or medical conditions. For many young people, an MS diagnosis is the last thing they were expecting the doctor to say.”
I negotiate with my MS. You have to own it. You can’t let it own you.
MS Queensland assists a number of peer support groups that operate around Queensland, offering localised self-help, friendship and support for people living with MS. With our support, Kate hopes that she’ll be able to help others in the same position as her.
Earlier this year, Kate started a new local MS group to support other young people newly diagnosed in the Townsville region.
“I’m really passionate about promoting ‘life after MS’ in a positive and humorous way, but also a realistic and relatable way.
“The existing support group is great but I was 18 when I was diagnosed. I wasn’t at the same stage in my life as some of the older group members.
Everyone has such a different MS story. Not every day is going to be brilliant and it’s important to know their limits, but by understanding their condition and making positive steps to manage it where possible, young people can achieve amazing things.”
Being diagnosed as a very young person is an incredible challenge for so many reasons. It’s during the transitional phase from childhood to adulthood. The support provided by friends, family and doctors is really critical because young people are still being shaped into the adults they will become, and are having to handle the diagnosis at the same time. There are a lot of things to come to
Kate’s story is just one of hundreds of people who are actively helping the MS cause and have benefited from MS Queensland’s support group network. For more information on joining a support group please contact our InfoLine on 1800 177 591 or visit our website www.msqld.org.au
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for MS support
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EVENTS THAT HELP PEOPLE LIVING WITH MS
Sarah said “it’s such a lovely evening to see so many lanterns lit up to support people living with MS.”
Upcoming MS Moonlight Walk Join over 3,000 walkers on Friday 17 October for a relaxing moonlit walk around Brisbane. Sarah De Luca is a regular moonlight walker and each year forms Sarah’s Army (pictured left) – a dedicated group of people walking together to fight MS. Every walker receives a coloured lantern to help ‘light up the sky’ as they walk along the Brisbane River. The 10km course offers a scenic route along the Kangaroo Point cliffs and a spectacular view from the Story Bridge. There is also a 5km walk for those who wish to head over the Goodwill Bridge and take in the sights of the Botanic Gardens. Register now for this year’s walk at www.MoonlightWalk.com.au and help us raise over $550,000 to fight MS.
MS fundraisers in the community Regan Trask has set herself two goals this year – to climb Mt Kilimanjaro and to raise $5,000 for MS.
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Diagnosed with MS in 2005, she’ll spend eight days this month climbing Mt Kilimanjaro along with her dad, uncle and aunt. Having already exceeded her fundraising goal, Regan and her team (pictured right) are well prepared; thanks to a number of training walks they did in Brisbane in the lead up. Keen to celebrate her mobility, Regan is already thinking about next year's challenge – Mt Everest Base Camp – although her dad, Ted, is less than keen! All the best Regan, you are truly inspirational! If you’d like to fundraise for MS Queensland please contact Michaela Chilcott on 07 3840 0887 or michaela.chilcott@msqld.org.au
MS Swimathons splashed up all over Queensland The 2013–14 MS Swimathon season has come to an end with 680 participants raising more than $170,000 across seven swim events!
Gentlemen, you’re invited to the NTS MS Men’s Lunch Join us for the revamped MS Men’s Lunch, sponsored by NTS Business Communications, at the Queensland Cricketer’s Club on Friday 31 October. This event provides a great opportunity to network with corporate and sporting identities from Queensland.
Our highest fundraiser, Fiona Egan from Townsville (pictured below), raised $3,665 for MS. “My 62 year old father was diagnosed with MS 16 years ago. He went from being a very active man, to living with this progressive disease which limits him in his everyday life.” While swimming is not her forte, Fiona was amazed by the support she received from family and friends. “I was blown away by the number of people who supported me. While the funds are important, it’s also about raising awareness of this silent disease.” The new Griffith Sports MS Swimathon at Mt Gravatt is next, kicking things off on Saturday 18 October. For more information please visit www.MSswimathon.com.au
Enjoy a relaxed afternoon of delicious food, wine, entertainment and surprise activities – raising funds to support people living with MS.
Robby said “I want to say a big thank you to everyone who made my finish so special. After this huge personal achievement it was special to see others show their appreciation.
Enerflex MS Brissie to the Bay raises more than $1.35 million This year’s ride got off to a foggy start, with more than 5,400 riders departing Musgrave Park in South Brisbane on Sunday 22 June to take part in the 24th Enerflex MS Brissie to the Bay bike ride. Together they raised an incredible $1.3 million for MS – a record! Robby Mac (pictured above) travelled from northern NSW with her family and friends to ride the 100km course. She’s been living with MS for 14 years and was determined to finish the ride. It was a touching moment to see her cross the finish line alongside her father.
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Don’t miss out on your place at this exciting event. Organise your guest list of clients, friends and colleagues and order your tickets now. For more information please contact our Project Manager Karen Lawrie on 07 3840 0829 or karen.lawrie@msqld.org.au or visit www.msqld.org.au to download a booking form.
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Client in focus mark cranny from BRISBANE
Clients
M
ark Cranny received his diagnosis of primary progressive MS in February this year at the age of 49. He had been experiencing MS symptoms since 2002 with tingling in his leg and urological issues but it wasn’t until worsening episodes of temporary blindness kicked off the process that confirmed multiple sclerosis. He decided to contact MS Queensland’s services team and face any MS-related challenges head on. Mark attributes a lot of his newfound positive attitude to his sessions with our Psychologist Carolyn Ho. Though at first cynical about counselling, Mark said Carolyn helped him deal with his diagnosis and was able to prepare him for future stress. “I really felt cared for, not just as a case or a client, but as an entire person with skills and concerns and apprehensions and possibilities.” While Mark has experienced a steep learning curve in the first few months of his MS journey, he says that having access to skilled support and information has been extremely beneficial for him. Through his physiotherapy sessions with Joy Constantine at MS Queensland’s Chermside Clinic, Mark has met other people living with MS and has felt warmly welcomed into the MS community. With Joy, he underwent a series of face-to-face physiotherapy appointments before they worked together on a suitable home exercise program for him. Mark says his physiotherapy sessions have allowed him “to better manage my MS and maintain my movement and balance which is very important with progressive forms of the condition.”
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Mark has always been strongly involved in the community and has held voluntary leadership positions for his community kindergarten, football club, surf club, the scout movement, primary school, secondary college, and in professional associations. Along with his daughter and a group of their friends, Mark is volunteering at this year’s MS Moonlight Walk coming up on Friday 17 October. For more information on our range of services and how we can help you through psychology and counselling or physiotherapy support, please contact out InfoLine on 1800 177 591 or visit our website at www.msqld.org.au
having their say Sunshine Coast and Central Queensland client survey OUTCOMES
E
arlier this year our Sunshine Coast and Central Queensland Regional Service Coordinator, Tasman Saywell, surveyed close to 400 clients in his region to gain feedback on their specific MS needs. This feedback has helped us better plan for the 2014-15 year. The survey showed people with MS were most interested in: • opportunities to connect and meet informally with other people living with MS in their area; and • information sessions covering exercise and physiotherapy, cognition and memory, fatigue, depression and continence. Based on the feedback, so far this year we have already delivered and scheduled: • Fatigue Self-Management workshops in Bokarina, Gympie and Kingaroy; • an Information Session for people with MS in Bundaberg; • Fatigue Self-Management workshops scheduled for Hervey Bay and Bundaberg; and • Working with MS workshop on the Sunshine Coast. The success of these client surveys have proven invaluable for MS Queensland. Not only have our services team gained knowledge of the interests and concerns of our clients in the Sunshine Coast and central Queensland regions, it’s also provided us with the opportunity to plan and deliver future relevant workshops and support networks for the MS community. We’ve also reconnected clients with our organisation and it has reinforced the need for a new Regional Service Coordinator based in central Queensland. Plans are now underway to fill this position and find a suitable office location in Rockhampton. Our client feedback surveys have now been distributed in three regions in Queensland. If the opportunity arises in your region, please take every chance to have your say. This will greatly assist us in delivering the most relevant services to your community.
True champion
defying the odds
A
fter receiving her MS diagnosis in 2008, Janine Watson – a client of ours from the Gold Coast – has defied the odds and become the highest ranking Taekwondo fighter in Australia. The 33 year old won both national and international titles in 2012, took out every Australian state title in 2013 and has won three gold
medals in the international All-Stars tournament in the United States. These achievements on their own are amazing, however on top of her fierce Taekwando competitions, Janine also faces a personal battle with MS. With her MS symptoms starting with double vision, Janine now faces a loss of sensation in her arms and legs, experiences fatigue and partial paralysis. Yet she has refused to allow her MS to dominate her life. Receiving her diagnosis just six months before she formally began training for competitions, Janine decided to remain committed to Taekwondo and has been using the exercise positively to manage her MS.
tendinopathy (AT) in both her legs earlier this year, which limits feeling from her knees down. Despite this significant challenge, she bounced back and went on to take out the New Zealand titles just a couple of months later. “Success for me is not the number of medals or titles that I win. Success is being able to step onto the mat and be the best that I can be. Attitude, not aptitude determines destiny.” Janine is planning to once again walk in our upcoming MS Moonlight Walk on Friday 17 October. You can join Janine by registering for the 5km or 10km walk today at www.MoonlightWalk.com.au
But she’s faced some setbacks with the development of achilles
MSLIFE.
Did you know we now have a special e-book version of MS Life? If you choose to receive MS Life via email you’ll get the magazine a few days earlier than the posted version of the magazine. The email contains a link to the latest MS Life as an e-book which is easily flipable on your computer, laptop, iPad or tablet – as long as you’re connected to the internet or wifi. One of our members Wendy Lovelace was amongst the first to adopt the new e-book saying “the new e-version of ‘MS Life’ feels bright and breezy and really nice to read – it’s terrifically responsive and with the page turning and email links almost feels interactive.” If you would like to change to receive MS Life via e-book please contact us today on 07 3840 0888 or email mssociety@msqld.org.au
MS LIFE – SPRING 2014
If I have any advice to give people, it would be to focus on what you can do, not what you can’t do. Sure, you’ll get knocked down and have setbacks, but you need to just get back up and keep going.
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MS
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‘READY’
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ast year our services team delivered the first READY program (Resilience for Adults Every Day) in Brisbane for people living with MS. READY is a seven week, group based program developed by the University of Queensland which aims to assist participants to build skills in resilience for managing the challenges of everyday life and living with MS. In partnership with students from UQ’s School of Psychology we have now successfully run the READY program across four south-east Queensland locations. The course, developed by UQ’s Associate Professor Ken Pakenham, was adapted specifically to people living with MS. Over 40 people with MS have participated to date and initial evaluations have shown that many have seen reduced levels of stress and an improvement in their ability to cope with difficult situations and emotions around MS. As the program is part of a research project aimed at discovering what tools assist people to manage living with MS, READY attendees receive a pre and post course evaluation and a follow-up evaluation three months later. The results over time are being analysed as part of one student’s PHD thesis.
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While a group environment can seem somewhat daunting to many, feedback from participants showed that the group environment enabled them to share experiences and talk openly about their daily challenges. The ‘booster’ session held five weeks after the course was well attended, further showing that participants are keen to keep in touch and follow-up on what they have gained. One client has said the program was “life-changing” for her. A huge thank you to Mr Michael Paris, for his generous donation in making the READY program possible. As part of our commitment to service delivery, we are currently planning the ongoing delivery of our educational programs to additional regions. We will update our website www.msqld.org.au when dates and locations are confirmed.
his year’s MS Cycle Challenge, part of our Enerflex MS Brissie to the Bay bike ride, was again a great success. It’s pretty simple: choose ‘time’ or distance’ and get moving however you can. We had a number of people with MS across Queensland use their motormeds, stationary cycles and arm cycles to participate and raise funds for the MS cause. The MS Cycle Challenge started in 2012 for people with MS not able to take part in our main bike ride because of strength, dexterity or mobility issues. MS Cycle Challenge gives everyone the chance to get involved in our biggest fundraising event of the year and get a bit of exercise in along the way. Here’s what some of our clients who took part in this year’s MS Cycle Challenge had to say: Leiza Richmond was just 25 when sudden numbness in her face led to her MS diagnosis. This year, her daughter Bianca participated in the 25km course of the Enerflex MS Brissie to the Bay bike ride for the seventh year in a row. Leiza also took part in the MS Cycle Challenge, taking on the ‘distance’ challenge and rode 30 km throughout the cycle challenge period. She said “it doesn’t matter how far you go, just as long as you get there.” Jean Bright is in her 80’s and has been living with MS symptoms for over 50 years. Last year Jean raised an impressive $300 during her MS Cycle Challenge and this year raised near the same amount. Jean isn’t letting her MS slow her down and said “I loved taking part in the challenge each year – it’s so good for my legs!”
Like to cycle? Are you a keen cyclist living in Brisbane? We’re looking for a volunteer that rides to come to our Dutton Park site once a week and ‘tandem cycle’ with one of our Granston Lodge residents who is unable to cycle on his own. To express your interest please call our Activities Coordinator Ann Woodland on 07 3840 0837.
with MS
“I
’ve always considered myself to have a positive outlook on life and being told in November 2011 that I had multiple sclerosis did nothing to alter this outlook. If anything I’m possibly even more annoyingly positive now than I was before! I remember my first consultation when my neurologist asked “have you heard of MS?” and I simply thought “that’s weird, how bizarre!” These days of course I am far more informed about MS. In hindsight I’m extremely lucky to have been diagnosed very quickly. I started my medication and got on with my busy life as a wife, mum to two wonderful sons and of course my full time job. Life sometimes takes us in a direction we may not expect, or perhaps don’t want to go in, but we don’t always have a choice, except perhaps in the decision to choose how we handle the situation we face. After a period of settling into my slightly different world with MS, I realised it was time to embrace and take ownership of my world with MS. That’s why at the beginning of last year I chose to get involved with the MS Queensland community by volunteering with the events team. I found this to be a very rewarding experience and now I find myself at as many MS fundraising events as I can fit into my busy life. The MS Brissie to the Bay, MS Moonlight Walk and now the MS Swimathons (and I don’t even swim!). It never ceases to amaze me how many wonderful people attend, participate and volunteer at these events. It’s truly a time to appreciate the human spirit of giving, helping, and everyone at the event being absolutely amazingly positive. I recommend you try it!” If you have a living positively with MS story that you’d like to share please email us at mslife@msqld.org.au
MS and cognition Some of the most common, yet hidden, symptoms of MS are changes people may experience with cognition and their emotions. For most people these symptoms are relatively mild and can fluctuate from day to day; they may worsen during a relapse and certainly can improve. Not all people with MS will experience cognitive or emotional problems, but recognising these symptoms and understanding possible changes is the first part of managing them. We have a range of resources on cognition and emotions, some of which are listed here. MS and cognition This is a comprehensive resource that looks at why cognitive problems occur in MS and how to identify them. It also provides information on treatments and management of the symptoms, along with day-to-day living with cognitive problems. MS and your emotions This resource describes some of the emotions you may experience when dealing with a diagnosis of MS. It’s also useful for family, friends and caregivers as it provides a better understanding of the emotional aspects of living with MS, as well as dealing with some of the changes that MS can bring. The shifting tides of moods in MS This is a helpful article from ‘Momentum Magazine’ about common emotional issues that people may experience whilst living with MS. It discusses and provides some management strategies relating to grief, depression, anxiety, feelings, mood shifts, emotions and more. For more information about any of these resources, or to have a copy mailed or emailed to you, please email us at info@msqld.org.au or phone our InfoLine on 1800 177 591.
MS LIFE – SPRING 2014
How Jenny Lives positively
MS Resources
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ADVOCACY
People WIth Ms
WITH NATALIE
One year on – the National Disability Insurance Scheme July 2014 will be noted as a significant date in the development of the NDIS in Australia. • Preparation for the NDIS in Queensland is underway with the announcement in early July that two NDIS offices will be established in Townsville and Brisbane to help inform the design and development of the scheme in Queensland. The roll out in Queensland will start progressively from July 2016. • July also marks one year since the NDIS rollout started in Tasmania for young people aged 15-24, in South Australia for children aged 0-14, and in the Barwon area of Victoria and the Hunter area in NSW for people up to age 65. • Since early July this year the NDIS has also commenced across the ACT, the Barkly region of Northern Territory and the Perth Hills area of Western Australia. Keeping up to date will make sure you have the right questions prepared to gain the most value from your individualised personal plan. A great resource on the NDIS is www.msqld.org.au/msresources/ndis-important-updates
Let your local member of Government know the issues that are important to you! Our community was in shock when the State budget was handed down in June with suggested concession cuts. After a great deal of noise was made throughout the community, we were relieved to hear that the Queensland Government would cover a federal budget shortfall of more than $50 million per annum in pensioner concessions. MS LIFE – SPRING 2014
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This is an unfortunate, but strong example of making sure the issues that are most critical to you are known by our politicians. Without informing our members of Government of the issues that are of greatest concern to you our issues cannot be addressed. If you would like assistance to meet with your member of Government please don’t hesitate to contact me on 07 3840 0823 or email natalie.walsh@msqld.org.au
update
From the State Convenor of PwMS Support Groups, Jenni I often spend time with MS friends in their homes and recently, two of these visits were with older ladies who have been living with MS for many years. Their situation may sound like the usual scenario – of a couple of women living with a disease – but in both of these cases, the person living with MS has also been forced to become the ‘carer’ for their partner who has declined in health over the years, often rapidly. A very grounding thought when I feel down about my own health. On another level, there is so much varied information around MS these days in our news feeds. It’s wise to do your own research before making decisions to whether the information is genuine or accurate and suitable for you. Somebody’s opinion without you taking the time to gain a full insight into the topic is worthless. Excitingly, MS Queensland has partnered with a group of volunteer Masters students from the University of Queensland to undertake a research project so that we might gain valuable insight into what our MS support group members expect from their involvement in the group, how they like to interact and what they believe MS Queensland should do to support the groups. MS Support Group coordinators will be contacted soon to initiate the gathering of ideas, which will be discussed at the annual MS Support Group Forum on Thursday 27 November. This will be followed the next day by the always productive annual MS Queensland Conference and AGM on Friday 28 November. We know the MS Brissie to the Bay recent cycling event was a resounding success in raising money for support and services for the MS community. We look forward to seeing you at the MS Moonlight Walk on Friday 17 October at Southbank for another night of fun and laughs as we connect and create awareness for people with MS. Be well and stay warm. Jenni
Questions WIth TIM
MS symptoms: cognition nderstanding the complexity and variability of symptoms people with MS may experience is not just an ongoing issue for our clients, but also for families, friends and colleagues. One of the most common, but hidden, symptoms of MS is the changes people may experience related to cognition. These changes can affect the way people feel about themselves and alter their cognitive functions. For many, the cognitive (and emotional) effects of the disease represent its greatest challenges. Cognition refers to the ‘higher’ brain functions such as memory and reasoning. Like every MS symptom, some people will never experience significant cognitive changes, but up to 50% of people with MS will. For some people it can occur very early, for others it may worsen or progress over time. And, like every other MS symptom it can vary, it may improve, or it may be a constant. The most commonly affected aspects of cognition are: • memory; • attention and concentration; • word finding; • speed of information processing; • abstract reasoning and problem solving; • visual spatial abilities; and • executive functions. Source: Multiple Sclerosis International Federation “Cognition and emotional changes” 2013.
Understanding what these changes can be, and if this is significant to you, and getting relevant information is
the first step. MS Queensland has a number of resources that help with this and our Information Coordinators have provided some examples on page 17.
So what now? Getting an assessment is the obvious next step. The point of an assessment is to give you a better handle on what is affected – and what are your cognitive strengths. Then of course, how to use these strengths to your best advantage. Tests that may be done range from a very brief ‘screening’ test that can be done by your GP, neurologist or MS nurse. These are just that – screening tests. They give you indication that there may be problems but do not provide enough information to plan strategies or develop treatment plans. Occupational therapists can go a bit deeper; psychologists and neuropsychologists deeper still. As always, cognition can be affected by other MS symptoms such as fatigue, pain, depression, or get worse during a relapse. It will take time and patience but it can be ‘managed.’ Tim, MS Nurse Practitioner and Manager of Specialist Education Note: If you have an MS-related question to ask Tim, our Manager of Specialist Education, please email Tim at mslife@msqld.org.au
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MS LIFE – SPRING 2014
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www.MoonlightWalk.com.au
REGISTER NOW
FOR BRISBANE’S ANNUAL RIVERSIDE WALK
the Walk
The Pa @ Sou rklands th Bank
FR ID AY 1
Walk st ar
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YOU can make a difference by walking 5km or 10km by moonlight to help raise money for people living with multiple sclerosis. P: 07 3840 0828 E: events@msqld.org.au www.facebook.com/MSMoonlightWalk An initiative of MS Queensland
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. Š 2014 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. Your privacy: MS Queensland complies with the Australian Privacy Principles. Our Privacy policy is available on the website at www.msqld.org.au We collect information for the purpose of providing care and services to clients, and promotional activities and information services. If you wish to update your information please contact MS Queensland on 07 3840 0888.