MSLIFE. SPRING 2013
QUEENSLAND’S PREMIER MAGAZINE FOR PEOPLE LIVING WITH MS
An overview of the work into MS cause and prevention being funded by MS Research Australia
HANNAH’S HEROISM pg. 02
pg. 04
pg. 07
Attend our Annual MS Accommodation Falls prevention Conference and AGM Strategy and balance
pg. 14
DisabilityCare Australia update
Annual Conference LETTER FROM THE EDITOR
AGM
Attend THE MS Queensland
Annual Conference and AGM
FREE EVENT
Dear readers, As we head into the warmer months, here in the office we are gearing up for another big half of the year! With two more MS Swimathons, the MS Moonlight Walk and our Annual Conference and AGM coming up, Christmas will be here before we know it. The final fundraising figure for the recent MS Brissie to the Bay was an incredible $1.28 million, which will help fund research and support services for Queenslanders living with MS. A big thank you to everyone who has participated in our fundraising events so far this year; we couldn’t have achieved this success without your help. To read more about our upcoming events, see pages 12 and 13. This edition’s key contributor is our CEO Lincoln Hopper. On page 4 he talks about MS Queensland’s future accommodation strategy as well as introducing the new MS Research Australia CEO, Dr Matthew Miles. We have included information on the top five research projects currently underway in Queensland, as well as an update on the Ann Langley Scholarship for the PwMS Support Group forum coming up in November. As Lincoln mentions in his column, he’s been spending time travelling around regional Queensland visiting our pwMS support groups throughout the year. As MS Life is our key client communication, we are always interested in news and story ideas from you, our readers. If you would like to see a particular topic covered in one of our editions, please email me at mslife@msqld.org.au As always, if you have any feedback about this edition of MS Life please don’t hesitate to get in touch by emailing me at mslife@msqld.org.au MS LIFE – SPRING 2013
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Kindest regards Cassie, Editor, MS Life
FRIDAY 8 NOVEMBER 2013 10:30am – 2:00pm
Join us at the Southbank Institute of Technology, South Bank for the second annual MS Queensland Conference and AGM. This year’s program will feature guest speakers on topics including DisabilityCare Australia and current Australian MS research. The program also includes the Annual General Meeting (AGM), lunch and refreshments as well as a few awards and presentations. Southbank Institute of Technology is a fully accessible venue with professional catering provided. Parking and drop off access is via Ernest Street. Public transport is close by. RSVP is essential to secure your attendance. Numbers are limited and will be allocated on a first come first served basis to avoid disappointment. RSVP by Friday 18 October to daz.davies@msqld.org.au or 07 3840 0804.
MARK YOUR DIARY 2013 Annual CONFERENCE AND AGM ON FRIDAY 8 NOVEMBER. Southbank Institute of Technology, Ernest Street, Southbank
If you’d like to stay in touch with MS Queensland’s activities, events and physiotherapy programs visit:
To make a donation to MS Queensland or for more information on what we do please email mslife@msqld.org.au or call 1800 287 367 or visit www.msqld.org.au Acknowledgement: We wish to thank Hannah Boag for the use of her image on the cover of this publication. Photo by Ryan Smyth Photography.
CONTENTS SPRING 2013
“…you can take the boy out of the country but you can’t take the country out of the boy.” Growing up in a small regional town (and still a “country boy” at heart), over the last few months I’ve had the privilege of visiting places in regional Queensland similar to where I grew up; meeting with amazing and inspiring people through the network of MS peer support groups operating around our great state. From Gatton to Bundaberg, Mackay, Gladstone and Rockhampton as well as far north Queensland, I have been reminded of the unique challenges that people with MS living in regional communities face, especially the big distances people need to cover to get access to specialist help and support outside of their local community. At MS Queensland our stated organisational mission is “…to be the first-choice for MS information, education, treatment, care and support across Queensland.” Achieving this for the whole of Queensland is a lot harder than it sounds; the difficulties of distance facing regional communities are the same for MS Queensland staff and volunteers seeking to offer services and support, when and where people living with MS need them. That’s why we’ve begun to expand our Regional Services Coordinator team and are slowly establishing new MS Queensland offices around the state. We’re also investing in technology like our new website www.msqld.org.au, Skype video and mobile apps to help get reliable information and support out to people living with MS, wherever they live. Of course, living in a larger town or city also has its own unique challenges, but with your help and ongoing feedback, MS Queensland will continue to work hard on doing what we can to help people living with MS to get the best out of life – wherever that is in Queensland. Best wishes,
Lincoln, CEO
COVER STORY g Hannah Boa
Hannah’s heroism Pages 10–11
PAGE 2–3 Letter from the Editor From the CEO PAGE 4–5 MS Accommodation Strategy New MS Research Australia CEO announced MS cause and prevention update PAGE 6–7 24 hour walk for MS Ann Langley scholarship Falls prevention and balance Wendy’s work with MS in Cairns PAGE 8–9 Heartmoves for MS, Ipswich update How Kylie lives positively with MS Annerley meditation sessions PAGE 10–11 Hannah’s heroism PAGE 12–13 Events that help people living with MS PAGE 14–15 DisabilityCare Australia update First MS Cycle de France a success Meet Brian Tanner PAGE 16–17 Advocacy with Natalie PAGE 18–19 MS questions with Tim MS resources MS Support Groups update
Letters to our Manager of Specialist Education, Tim If you have an MS-related question to ask Tim, our Manager of Specialist Education that can be answered in the next MS Life, please email Tim at mslife@msqld.org.au before 11 October 2013.
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FROMthe CEO
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MSStrategy
AccoMmodation
According to a recent national survey, 9 out of 10 people living with MS currently live at home (own or renting) and want to remain at home for as long as it’s possible and practical.
We aim to achieve this through: • supporting the wellness of pwMS across the lifecycle of their MS journey; • providing housing pre-planning, information and advice, particularly to the newly diagnosed; • offering financial assistance for home modifications and aids and equipment; • increasing our in-home care and support service offerings; • increasing access to holiday respite accommodation; and • increasing the supply of affordable accessible-housing for people able to live independently.
Evidence tells us that adequate income, stable health, wellbeing and access to the right support (e.g. in-home care) can help people living with MS to maintain independent housing. We also know that simple home modifications that adapt to a person’s changing needs over time would allow them to remain at home for longer. Sadly, age-appropriate high care housing solutions, when needed, are extremely limited and many people have to access aged-care accommodation as a last resort option. In Queensland this means an estimated 370 people living with MS or other Progressive Neurological Disease (PND) who are under the age of 65 currently live permanently in residential aged-care. MS LIFE – SPRING 2013
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To address the unmet housing needs of people living with MS, the Board of MS Queensland recently agreed on a long-term strategy for accommodation. Over the next 10 years, our goals are that: 1. People living with MS can live at home for as long as their condition allows by expanding initiatives to enable them to remain in their home for as long as possible and practical throughout the lifecycle of their MS journey.
2. People living with MS can access age-appropriate, high quality and affordable residential care and respite when and where they need it by resolving the unmet demand for specialist MS/PND residential care. We aim to achieve this through: • increasing access and supply of age-appropriate and affordable high care housing for people living with MS or other Progressive Neurological Disease; and • partnerships with aged-care providers. As such, over the next decade you’ll see MS Queensland doing much more to support people to stay in their homes as well as overseeing the construction of up to 100 new housing units. While this is a daunting task, we are all incredibly excited about achieving it. For more information please email our Director of Services Karen Quaile at karen.quaile@msqld.org.au
NEW MS Research Australia CEO announced
Multiple Sclerosis Research Australia has begun a new era in the fight against MS with the appointment of new Chief Executive Officer, Dr Matthew Miles. Dr Miles brings a wealth of experience to the role, most recently as Director of the University of New South Wales School of Medicine; one of Australia and the world’s largest university medical schools.
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information on MS RESEARCH AUSTRALIA’s work can be found at www.msra.org.au
CAUSE PREVENTION
update 2
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Investigating antibodies in the blood of people with MS
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How genetic risk factors affect the function of immune cells in MS Investigator: Dr Margaret Jordan 1 Institution: James Cook University Project grant: $300,000 from 2013 to 2016 Project scope: Much international work has led to the discovery of around 60 genes that influence a person’s susceptibility to MS. Functional genetics is now the next phase of this work and Dr Jordan’s research will reveal how these genes work and their role in the disease process.
Immune control of Epstein-Barr virus in MS Investigator: Prof Michael Pender 2 Institution: University of Queensland (UQ) Project grant: $390,000 from 2013 to 2015 Project scope: A large body of evidence indicates that infection with Epstein-Barr virus (EBV) has a role in MS. Prof Pender has shown that people with MS have decreased immunity to EBV which could allow the accumulation of EBV-infected cells in the brain and the subsequent development of MS. When we spoke with him, Dr Miles said he was honoured by the appointment; “It’s a privilege to be asked to lead MS Australia’s research arm and have the opportunity to play a part in tackling the MS challenge. I look forward to building on the strong platform the organisation has and continuing to work towards finding a cure.”
Investigator: Dr Judith Greer 3 Institution: UQ Centre for Clinical Research Project grant: $50,000 from 2012 to 2013 Project scope: An antibody is a protein produced by the body’s immune system when it detects harmful substances or mistakenly considers healthy tissue to be a harmful substance (auto-antibodies). Over 90% of people with MS have antibodies in their cerebrospinal fluid whereas a healthy individual has little or no antibodies. Dr Greer will determine if the level of a specific antibody correlates with the severity of MS.
Antibody detection and genetic screening in neuromyelitis optica (NMO), a rare variant of MS Investigator: Prof Simon Broadley 4 Institution: Griffith University, Queensland Project grant: $113,300 from 2012 to 2013 Project scope: NMO is a rare variant of MS which accounts for approximately 1% of MS cases. Pathological studies and the recent identification of a specific antibody to a cell water channel (aquaporin-4) conclude that NMO is a distinct demyelinating disease. Limited data suggests that standard treatments for MS have little or no effect.
The prevalence of neuromyelitis optica (NMO) in Australia and New Zealand and a blood test for its diagnosis Investigator: Dr Wajih Bukhari 5 Institution: Griffith University, Queensland Scholarship: $54,400 for 2012 to 2013 Scholarship scope: Dr Bukhari will contribute to the Australian and New Zealand NMO Collaboration, with the aim of estimating the prevalence and characterising the clinical features of NMO in this population. This study will improve the diagnosis and understanding of NMO and will enable provision of directed research to the wellbeing of patients.
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Below is an overview of the bodies of work into MS cause and prevention being funded by MS RESEARCH AUSTRALIA in QLD.
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24
HOUR WALK
FOR MS
She may be 17,000km away working from London, but our Media and Communications Manager Melanie recently walked 100km straight over 24 hours to raise awareness about MS in the UK. Taking part in the ‘London to Brighton Challenge’ Melanie set off with 1,800 other walkers from central London on 25 May and walked all the way south, finishing in the seaside town of Brighton the next morning. Being a fitness fanatic Melanie spent a mere three weeks training for the walk, which involved getting up at 4am each morning and walking again for hours every night. Before the event she said “I read the ‘drop out’ rate was somewhere between 30-40% due to injury, fatigue and sleep deprivation but I was determined to finish and keen to raise awareness of MS. There was no doubt in my mind that I wouldn’t finish it!” Then D-day arrived and before she knew it, Melanie was sporting her bright orange MS Society singlet and starting the challenge. She spent almost 75km (that’s 20+ hours) walking with a group of six British police officers; two of them also walking for the MS Society. After almost 19 hours of walking, Melanie’s exhaustion worsened and she hit ‘the wall.’ At early light around 5am she left the 80km rest point and had 20km to go. “My eyes were so heavy and for about 5km I walked through beautiful English farmland and countryside almost falling asleep standing up! My 20kg pack on my back wasn’t helping and I knew we had the biggest hill of the walk ahead of us. But by the 88km mark I had pepped up and found some energy from somewhere to finish it off,” she said.
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Melanie completed this amazing challenge for MS in 10 minutes under her 24 hour goal. She’s looking forward to her next physical challenges for MS which include walking 10 peaks in 10 hours in the Lakes District in England and a 60km fundraising walk for the MS Society in the UK in October this year. We wish her all the best of luck!
ANN LANGLEY
SCHOLARSHIP Thursday 7 and Friday 8 November will be exciting dates in the MS Queensland calendar, as members of the MS community get together to share their ideas and direction for the next 12 months for people living with MS. The first statewide forum for People with MS Support Groups, supported by the Ann Langley Scholarship, will be held on Thursday 7 November followed on Friday with the MS Queensland Annual Conference, open to all members of the MS community. In the Autumn edition of MS Life we announced the Ann Langley Scholarship. This important Scholarship – to honour Ann’s service to the MS community – will fund a representative from each Support Group to meet in Brisbane on the eve of the MS Queensland Annual Conference to share their leadership and insight of their pwMS Support Group. MS Queensland CEO, Lincoln Hopper and Chairperson of People with MS support groups, Jenni Saunders said they were looking forward to bringing representatives from our support groups together to share information, find new ways of meeting the needs of people with MS and ultimately, make new and beneficial connections. Are you part of a local MS Queensland Support Group? If you have any queries, please do not hesitate to contact our InfoLine on 1800 177 591 for more information.
FALLS
PREVENTION
BALANCE
The most common falls are not on stairs, curbs or over furniture, but rather slips, stumbles and trips on level ground. Nobody wants to fall OR have a stumble. The experience can be undignified, lower your confidence, be painful, and even alter your mobility and independence. Accidents will happen, so it’s important to consider that appropriate measures have been put in place. The National Multiple Sclerosis Society in America has published a booklet, ‘Minimising Your Risk of Falls: A Guide for People with MS.’ It is a wonderful resource in this area and covers the risk factors for falling including: walking, balance and coordination problems, deconditioning and inactivity, fear or falling or overconfidence, and hazards in the environment. As the weather begins to warm up, it’s important to manage the change in temperature with respect to pacing exercise options, outings and the general activities of daily living. You may find some general activities that over the last few months have needed less management in the cool, will need your attention again. Even a slight increase in core or body temperature can temporarily worsen the symptoms of MS, which in turn can lead to a greater risk of falling.
Now is the perfect time to establish a routine of activity that will strengthen your muscles, improve posture and exercise the balance areas in your brain. Without strong, flexible muscles and boosted balance, you are more at risk of falling. Now is the time to put in place exercise plans for strength and balance. You should consult a physiotherapist regarding a plan for you to reduce the incidence of falls and fall related injuries. Using the advice in this brochure you can enjoy the change in season and have confidence in your ability to minimise risks related to falling. To download a copy visit www.nationalmssociety.org or contact our InfoLine on 1800 177 591.
WENDY’S WORK WITH
Wendy Lee has been working with people living with MS in Cairns for more than six years, providing specialist physiotherapy skills to the Cairns MS Physiotherapy and Exercise Service. Working within Queensland Health’s Community Services, Wendy has the ability to provide a range of services within the Cairns community including: • advice on MS symptom management and self-management; • advice to nursing homes and other care providers about how to support the needs of people living with MS; • hospital visits to people with MS to advise Cairns Base Hospital staff on a person’s MS–specific needs post admission; • assessment and rehabilitation including monitoring of home exercise programs; and • working on establishing an after-hours service for group exercise (early MS stage).
Wendy also has established a local MS Fitness group at the Cairns PCYC Gym that operates two times per week to further help improve the quality of life of Cairns people living with MS. As well as supervising this fitness group, in 2011 Wendy established the MS Volunteer Massage Service using an MS experienced Massage Therapist who has a background working within the New South Wales MS network. Wendy’s incredible commitment to working with people living with MS has seen her client base for the Cairns Fitness Group increase by 61% in the last 12 months! If you would like to find more information on regional physiotherapy services visit www.msqld.org.au/how-we-help-2/regional-services
MS LIFE – SPRING 2013
MS IN CAIRNS
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HEARTMOVES
FOR MS
IPSWICH UPDATE
In the Summer edition of MS Life this year we introduced Heartmoves for MS. Earlier this year, Roslyn Hackett – who was awarded the Heartmoves for MS Scholarship for the South West region in 2012 in partnership with The Heart Foundation and MS Queensland – officially launched the program in Ipswich at Cameron Park Scout Hall. The launch started off in style with a guest appearance from MS Queensland Ambassador, Mayor Paul Pisasale, who welcomed the Ipswich MS community.
“It was an honour to have met Mayor Paul Pisasale and thank him for sharing his personal view on how he lives with a positive mindset and to not let this disease take control of your life. It was very uplifting and inspiring” – Roslyn Hackett. MS LIFE – SPRING 2013
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The launch offered a Heartmoves for MS demonstration, light refreshments and the chance for people to share their outlooks on MS and to meet new people living with the same condition. It was great to see so many local Ipswich residents living with MS attend as well as many other carers and family members. For more information on Heartmoves for MS programs, visit our website www.msqld.org.au/how-we-help-2/msevents-near-me
How KYLIE lives positively with MS sale and aul Pisa Mayor P ie Passmore Kyl
“My name is Kylie Passmore. I was 29 years old when I was diagnosed with MS in 2008. At the time, I was working as a Diversional Therapist in a day respite program for frail aged people and younger people with disabilities. My main symptoms were vertigo, nausea, difficulty with balance and fatigue. In the first couple of years, frequent episodes of debilitating
vertigo sent me into hospital several times. I struggled to get back to work and every time I did an 8-10 hour shift I would relapse again. Because of this situation I resigned from work in 2010. Through the MS physiotherapy program, I found there was a need for a social outlet for those living with MS so I started the Mobile Socialites. I chose the name Mobile Socialites because I wanted the MS to represent something positive. The group has been a tremendous success, meeting the needs of many who are in need of friends, especially those who understand the daily struggles of life with MS. It started with eight members, three years later we have
almost thirty. We meet at different cafes and restaurants around the Northside – hence the ‘Mobile’ part of its name. It’s a very positive group and while we all live with MS, we focus more on “living” than the MS. I have also become passionate about fundraising and raising awareness about MS. In 2011, I organised a Devonshire Tea at my church. Around 80 people attended and $1,001 was raised. I did ‘The Great Novel Challenge’ in 2011 and raised over $300. I participated in the Big Dinner Party both last year and this year. This year’s events have raised $735. I am also planning another event to be held later in the year.”
ANNERLEY
MEDITATION THE POWER OF MEDITATION
SESSIONS
Every Saturday, residents at Annerley Apartments enjoy a 30 minute meditation session run by Independent Living Assistant, Frances Bakes. Frances began running meditation sessions at MS Queensland’s accommodation facility three and a half years ago when it was opened. Since then, she has helped residents achieve movement in limbs that were thought to be immobile.
The residents now believe that MS stands for ‘more success’ as they each begin to achieve movement in parts of their body that have not moved in years. “She has given us confidence and we are reminded that we are all valued human beings. We call her Fran-tastic!” – Carmel Cock, Annerley resident.
MS LIFE – SPRING 2013
Not only does meditation help the residents achieve control and movement, it also facilitates self-awareness, self-esteem, and empowers the mind. “It’s amazing what they can achieve when they are focused,” Frances said. “During the sessions, one of the residents is able to eliminate her tremors by relaxing and focusing on the moment.”
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heroism
hannah’s
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Hannah Boag, living with MS
es at MS Hero Our 2013 ent House Governm
Jane &
Hanna
h Boa
g
Hannah Boag was diagnosed with MS at the tender age of just 14.
Since being diagnosed with MS two years ago this bright young girl has had to face new challenges, yet has handled it with nothing but stoicism and a level of maturity far beyond her years. “The first MS symptom I experienced was numbness and tingling in my left arm and hand to the point where I became clumsy and it was hard to feel things on my finger tips.” “Looking back, I had been suffering fatigue for a few years but my family and I had assumed this was due to the stress of school and studying.” After a nerve conduction study produced normal results, a final push from Hannah’s parents for an MRI led to her diagnosis of MS. The diagnosis means that Hannah, once an active teen who participated in a number of sports – even placing 9th in the Queensland Junior Masters for golf – can no longer participate in competitive sport. Not one to be held back by such an obstacle, Hannah now focuses all of her energy on her schoolwork. “Having my treatments on sport afternoons, lessens the impact of me missing classes. Mum and I use this time as our bonding time. We watch our favourite programs together and have a laugh, just spending time together.”
Hannah does get fatigued, but makes sure she has a rest when she comes home from school and after treatment. She never complains and just accepts that MS is now part of her life. Her attitude is, “I have MS, I will live with it and I will deal with it.”
Senior Maths B, Math C, Biology, Chemistry and Senior Japanese. “My main hobbies are music, reading and writing short stories.” Hannah, now 16, has even had a few short stories published through a compilation of short stories for schools around Australia.
“MS has made me more positive. Of course, I still have the bad days when I want to be ‘normal’ but what really is normal. So I just embrace life and accept the things I cannot change. And anyway who wants to be normal, normal is boring.”
With such a bright future, Hannah sees herself perusing a path in psychology and criminology.
Not only has this bright young girl accepted her MS, but Hannah has also reached out to other young girls who have been newly diagnosed.
Hannah’s message for other young people living with MS is this;
“I have had contact with a couple of girls through Facebook, knowing that there are others out there my age living with MS is a good support – knowing that I’m not alone.” For all of these reasons, Hannah’s grandmother nominated her in MS Queensland’s MS Heroes award program earlier this year. “Attending the Governor’s Reception on World MS Day was very overwhelming.” Hannah’s outlook on her future is a positive one. The Year 11 student, who is an avid reader and writer, studies an array of subjects including
“I have a fascination for the criminal mind – trying to understand why people do the things they do. Every action is caused by a reason or thought, even if that person doesn’t believe or understand it. The mind is a powerful tool.”
“Don’t let it ruin your life, you still have your whole life ahead of you and if you let it knock you down you’ll find it hard to get back up. And in the wise words of the fish from Finding Nemo ‘just keep swimming.’ MS is what you have and not who you are. You are never going to be prepared so you just have to take the risk. The future is uncertain for everyone so just live life to the full.” Hannah’s story is just one of hundreds of people who have benefited from support from MS Queensland. For more information on our services please contact our InfoLine on 1800 177 591 or visit our website www.msqld.org.au
MS LIFE – SPRING 2013
She lives on the Gold Coast with her family and was earlier this year awarded MS Young Person of the Year.
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Upcoming MS Moonlight Walk Now in its 15th year, the MS Moonlight Walk will be held on Friday 18 October at dusk. We invite you to join us for a 5km or 10km walk around the Brisbane River as the sun sets and the full moon rises. Wander the banks of South Bank and the Brisbane River by the light of the full moon. All participants holding their MS lanterns are a spectacular sight to see as they stroll under the spectacularly illuminated Kangaroo Point Cliffs, over the Story Bridge and then make their way through Brisbane’s lush Botanical Gardens before crossing the Goodwill Bridge on their way to the finish line.
$350,000 to fight MS. Join thousands of proud Brisbanites as we step out to raise vital funds for MS support and services. Register now at www.MoonlightWalk.com.au For more information please contact the events team on 07 3840 0828 or events@msqld.org.au. If you’re not able to walk, why not volunteer and help cheer on our walkers? For more information email tim.neunhoffer@msqld.org.au
Thanks to the support received from event media partner 97.3FM, over 3,000 walkers will be putting on their walking shoes to take part in the walk to raise an incredible
MS Swimathons splashing all over the state The 2013 MS Swimathon season will continue with participants ready to dive in and support people with MS in Toowoomba on 26 October and Jindalee on 17 November.
The MS Swimathon initiative has brought together hundreds of Queenslanders from around the state to join the fight against MS. This year successful events have already been held in Redcliffe, Cairns, Townsville, Rockhampton and the Gold Coast. For up to date information on upcoming MS Swimathons or to register your interest visit www.MSswimathon.com.au Join us for an amazing community day out, and dive in to support people with MS!
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Gentlemen you’re invited to the MS Men’s Lunch Join us for a unique and relaxed afternoon to wind down and raise a glass in the fight for MS at Suncorp Stadium on Friday 1 November. Enjoy a two course sit-down meal, drinks and fantastic entertainment. There is also the chance to win great prizes and bid on premium auctions, as we raise much needed funds for people living with MS. Tickets are $1,800 for a table of 10.
Seats are limited so be sure to book your table early to guarantee your place. For more information contact Events Manager Julia Senior on 07 3840 0863 or julia.senior@msqld.org.au
MS fundraisers in the community Every year, hundreds of individuals manage a fundraising event or initiative in their local community to raise vital dollars for people fighting MS. From Charity Golf Days and Gala Balls to running a marathon – our community fundraisers contribute to raising thousands of dollars and awareness of MS Queensland, and the services we provide.
sales that resulted in 375 guests attending a fabulous MS Masquerade Ball on the Gold Coast. Guests were entertained by roaming performers, live bands, auctions and raffles whilst dining on a delicious two course dinner. Taneal did an amazing job in making it all happen, especially as a first time fundraiser.
One of those fundraisers is Taneal Bobbermien. After seeing a documentary about MS, Taneal wanted to do something to help the cause. Her partner’s mother, Linda is living with MS so she knew about the condition but had never really understood what it actually meant. When Linda had a relapse, it prompted Taneal to start planning for an MS community fundraising event.
It was an inspiring evening all round that increased awareness of MS in the community and raised $25,881 to support people living with MS.
Taneal spent the next eight months promoting ticket
The events team would like to acknowledge and thank the amazing efforts of all our community fundraisers across the state for their committed support and effort to help people living with MS. To register your own community fundraising event, visit our website www.msqld.org.au
Brissie to the Bay raises more than $1.2million A very heartfelt THANK YOU to all of our amazing fundraisers, donors, riders, volunteers and cheer club members for their incredible support in helping us make this year’s ride such a huge success. This year we witnessed some incredible competition between our top fundraisers. Neo Pizza and GJI raised a combined total of $226,411 – a phenomenal effort. A special thank you to our Top 10 Individuals and Top 10 Teams:
Top 10 Individuals
1. George Ahlatis - $31,122 2. Mark James - $29,770 3. Megan Conlon - $15,987 4. Alyssa Martin - $10,154 5. Brian Cronin - $9,441 6. Daniel Casey - $9,265 7. Tas Moulis - $9,060 8. Anthony Conias - $8,879 9. Michael Arvanitagis - $8,500 10. Tony Mcintosh - $8,475
5,707 riders and 394 teams took part in the ride and there were over 150 awesome volunteers who braved the cold morning to make the ride such a phenomenal success.
✓ support cardiovascular functions ✓ warm legs with less or no pain ✓ ease spasms increase mobility
MOTOmed... passive/ active exercise. Assist in your own rehab
1. Neo Pizza - $113,824 2. GJI - $112,587 3. Brookfield Multiplex - $26,517 4. Monadelphous Engineering - $22,771 5. Kingaroy Cruisers - $21,430 6. Team Enerflex - $16,088 7. Birdwood Bikers - $15,819 8. Coffee Beings - $15,255 9. Thiess - $14,840 10. Team Toll NQX - $13,965 Keep an eye out in the coming months when we’ll advertise the date for next year’s amazing bike ride.
www.abilityinmotion.com.au admin@abilityinmotion.com.au Ph 07 5448 1753 • Fax 07 5335 1604 A.I.M - to brIng InnovAtIon to QueenslAnders
MS LIFE – SPRING 2013
Top 10 Teams
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DISABILITYCARE australia uPDATE As you will be aware, NDIS/ DisabilityCare Australia has commenced in four regions in Australia. As it is such a fundamental change, and in order to make this essential scheme sustainable, the program is being progressively rolled out to establish the right foundations. The Queensland Government will start its transition to DisabilityCare Australia from 1 July 2016, with the scheme to be fully operational from 1 July 2019. For everyone involved in DisabilityCare Australia, this is the time to learn. For states without a launch site, please use this introductory time while DisabilityCare Australia is being established to learn about the scheme and think about what you would like to get out of the scheme. What are your goals and aspirations? What do you need to have your goals and aspirations become a reality? This is exciting yet for some, quite a daunting task. To provide you with a living example of how this new scheme can impact a person living with MS, Disability Reform Minister Jenny Macklin MP shared this at a Disability Conference in June this year:
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“DisabilityCare will provide support for the needs of families and carers to help them in their caring roles. For example, Jason is a 38 year old who has multiple sclerosis and has always lived with his Mum, Ruth. She has provided all his care and support and like many parents in her position, Ruth worries about what will happen as she gets older. About how Jason will continue to be supported. When Jason and Ruth visit DisabilityCare, they develop a plan to provide support to meet his needs over time.
Jason’s plan includes a range of supports that will help Ruth in her caring role as well as helping Jason directly. This includes things such as funding for home modifications like hoists and handrails, which help Jason move around, and which help Ruth with the more physical caring tasks. It also includes funding for a formal carer to supplement the support Ruth provides, giving her a break from her role. Jason’s plan will also include a discussion about the future - with support to allow Ruth to reduce the number of tasks she performs for him over time, and for Jason to move into formal care when needed. This plan will give Ruth and Jason the peace of mind that he will be supported over his whole lifetime. Even if the time comes when Ruth isn’t able to be his primary carer. That Ruth and Jason don’t have to reach crisis point before the extra support will be there. DisabilityCare will also support people with disability who will benefit from early intervention.” As we know, every individual has different needs and will certainly have different goals and aspirations. The Queensland Government is working on the foundations for Queensland and has established the Queensland Planning and Implementation Group to guide this momentous transition to DisabilityCare Australia. This group is providing advice and input to the Queensland Government, including advice on how to prepare people with a disability, families, carers, the sector and government. Representation in the group includes people with a disability, families, carers, disability service providers, advocacy organisations, mental health organisations and peak bodies. If you require further information on the transition to DisabilityCare Australia, please contact Natalie Walsh, our Advocacy Manager on 07 3840 0823 or email natalie.walsh@msqld.org.au
FIRST
MS CYCLE de FRANCE
Meet Brian Tanner Gympie MS Support Group
a success
Every cyclist experienced extreme physical and mental battles and every cyclist won that battle. When each of the riders signed up for this event, they had no idea of what sacrifices would be made, nor the benefits that would come from participating in this event.
Each of the five days involved two major mountain climbs – all of which stood at over 1,800m above sea level. Col de Galibier was the most challenging of all the climbs. After 16km of hard uphill climbing, the temperature at the top of the mountain dropped to one degree; they were surrounded by snow and the chill factor could not be dismissed. One of the most outstanding achievements by the team was to reach the top of Col de la Bonette – standing at 2,802m – it is the highest road in Europe! The physical challenge experienced was significant, but provided them with just a glimpse of the battle some people with MS live with every day. “After a day of rest, our bodies had recovered; however for a person with MS – that battle is day in, and day out,” cyclist Bianca Williams said. The determination of the riders to complete the tour was outstanding, but the relentless passion to ensure they raised over $80,000 to fund life changing physiotherapy services for people with MS was remarkable. MS Queensland staff members Bianca and Manoli who rode in the event agree that unforgettable memories were made.
A few years ago we featured an article on Brian Tanner. We decided to catch-up with Brian and his partner Christine to reintroduce the Gympie resident and convenor of the Gympie MS Support Group. Brian first started experiencing symptoms in the early 1990’s. Life was good, he was working as a TAFE teacher teaching heavy vehicle mechanics. He would sometimes trip over while running, and as this became more of an occurrence, headed to his doctor to receive the diagnosis of Primary Progressive MS at the age of 40. After diagnosis, Brian was having trouble with the brake, clutch and accelerator in his car and his neurologist advised him to get hand controls for the vehicle. Instead, Brian bought a Harley Davidson, and here began his love of Harley’s. After going through a divorce and retiring from work in 1999, Brian had his bike converted into a trike as his leg muscles were becoming weak. “I am coping okay with my MS, however walking is getting more difficult. Luckily I don’t need my legs to ride the trike.” Brian had set up a camper trailer towed behind the trike, and planned to travel around Australia. Just two years later, Brian met his life partner Christine. They took their trike and campervan on a trip to the Whitsundays and 13 years later they are still together. Today, Brian and Christine live in Gympie and are active members of their local MS community. As well as being the contact person for the Gympie MS Support Group, earlier this year, Brian sent us his Living Positively story and the couple then made the trip to Ipswich to attend Mayor Paul Pisasale’s Living Positively afternoon tea. For more information on MS Support Groups in your local area, call our InfoLine on 1800 177 591 or visit our website www.msqld.org.au
Thank you to the wonderful MS Cycle de France riders, donors and supporters – the 2013 MS Cycle de France event was an absolute success! You can read more about the event at www.MSCycledeFrance.com.au
MS LIFE – SPRING 2013
As a team, the 11 cyclists conquered many challenges over the five day cycle event in the French Alps. Every day presented new mountains, cycling 8 –10 hours per day.
15 michaket / Shutterstock.com Evok20 / Shutterstock.com
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ADVOCACY
with NATALIE
By the time this edition of MS Life goes to print we will have had our Federal election. The last six months in particular have seen a very interesting time in politics! Regardless of whether or not there is a new Federal government or your Federal member re-elected, we always have the great opportunity to work with our political leaders to share the issues that affect us. MS Queensland works strongly to place before government the issues that affect people with MS. Even when great things are achieved (for example the Medical Cooling and Heating Electricity Concession Scheme) we must maintain these issues and keep them at the forefront of our politicians minds to continue to influence policy for people living with MS and other chronic illnesses. We would love to hear from people who are energetic and excited about affecting change to make a difference where they live and ultimately influence the policy agenda for people living with MS. Our MS Queensland Policy Statements include: • NDIS/ DisabilityCare Australia • Aids and Equipment • Employment and Workplace Flexibility • Carers • Energy and Climate Change • MS Research • Universal Housing Design • Young People in Nursing Homes • Health and Community Services If you are interested in making a difference for people with MS by becoming an MS Advocate, please email me at natalie.walsh@msqld.org.au to share your passion in helping to make a difference. MS Queensland CAPS 2013 0813 OL.pdf 1 13/08/2013 11:38:52 AM
FEDERAL E LECTION
FOR WHAT MATTERS TO
YOU
Robert Pask and Natalie Walsh
MS National Advocates Coordinator – finalist for the National Disability Awards! We were delighted to hear in late July that MS National Advocates Coordinator, Robert Pask is a finalist in the National Disability Awards for the Excellence in Advocacy & Rights Promotion Award. Robert has been a great mentor to me and together with Robert we established the Queensland arm of the MS Australia National Advocates Program. Robert is a strong advocate for people living with disability and chronic illness. He established a peer advocacy program for people living with MS that has developed over the last five years. This program uses a unique model of mentoring and networking that allows advocates to progress key issues. We congratulate and thank Robert for helping MS Australia to establish and champion advocacy issues for people living with MS and wish him all the best as a finalist!
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M
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Natalie, Advocacy Manager
MY
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Keep updated on news regarding DisabilityCare Australia on the NDIS section of our website or contact Natalie Walsh 07 3840 0823 or email natalie.walsh@msqld. org.au
MS LIFE – SPRING 2013
Y
17
QUESTIONS with TIM
We have had a couple of questions about very good topics come through recently that I think are very worth sharing with you all.
pain management Pain management
Hormones
Pain syndromes are common in MS. In many instances pain can be a short-term symptom, but it can also become chronic and persistent. Pain management is always difficult. Pain can be musculoskeletal or neuropathic in MS, and can be a combination of both. Treating it can be hit and miss. Short-term acute pain can be treated with drugs, but when pain becomes chronic then a multidisciplinary approach is virtually essential. This includes doctors, physiotherapists, occupational therapists, psychologists and nurses who specialise in pain management – there are services that your GP or neurologist can refer you to in many (but definitely not all) parts of Queensland.
This is specific to women and relates to hormonal influences on MS and how that can affect heat tolerance and fatigue as well as many other physical and mental symptoms. It is unfortunate that there is not a lot of information about this very common subject – how does the menstrual cycle and menopause affect MS?
I just want to touch on the medications that may be used for neuropathic pain – many of them are not ‘traditional’ pain medications. We use many antidepressants and antiepileptic drugs, often in combination with what may seem like very basic painkillers such as paracetamol. Many of these antidepressants and antiepileptic drugs take time to ‘kick-in’ for want of a better expression and can take some getting used to. It is always a balance of relief of symptoms and side effects with these types of medications, and this is where specialist pain services come in to provide balance and non-drug options. MS LIFE – SPRING 2013
18
We know that many women (but definitely not all) will experience a temporary worsening of MS symptoms – any symptoms – either just prior to, or during menses. These ‘cycles’ do not worsen the disease, cause relapses or progression – but they do seem to be closely tied with changes in body temperature as different hormones changes in women’s bodies throughout the month. The hot flushes that many women experience during menopause do the same thing, making existing symptoms feel worse. Hormone replacement therapy may help – but like everything else this can be very individual and should be discussed with your GP. Thank you to those that asked these questions – as always I hope this information is beneficial. You can always call or email us to discuss any symptoms in more detail with us directly.
You will find information resources about pain management on page 19. If you have an MS-related question to ask our Manager of Specialist Education Tim, that can be answered in the next MS Life, please email Tim at mslife@msqld.org.au before 11 October 2013.
Tim, MS Nurse Practitioner, Manager Specialist Education
MS
RESOURCES
Pain and MS In the past, pain was not felt to be a common symptom of MS, so there is some still some confusion about its role in MS. Pain is now recognised as a significant symptom in approximately 60% of people living with MS. As a nonvisible symptom, it may be poorly understood by those living around the person with MS – family and friends, co-workers and health professionals. A person with MS may experience pain from the result of the damaged nerves, for example tingling, pins and needles, tight bands, burning, stabbing pain. It may be secondary musculoskeletal pain e.g. muscle spasm. People living with MS may also have totally unrelated pain, which is from other causes. It is important to discuss with your doctor and health professionals your pain symptoms.
For more information about any of these resources, or to have a copy of these mailed or emailed to you, please email us at info@msqld.org.au or phone our InfoLine on 1800 177 591. • The resource “Pain and MS” is a good start to understanding and managing pain associated with MS. Visit our website www.msqld.org.au/msresources2/ information-on-ms to download this resource. • Another resource “But you look so Good!” is also a useful read. Visit www.nationalmssociety.org to access this resource. • Also available is “MS and ME” – a self-management guide for people living with MS. It discusses strategies and provides resources to help you manage your MS. Visit our website www.msqld.org.au/msresources2/ information-on-ms to download this resource.
MS SUPPORT
GROUPS UPDATE
These last couple of months seem to be the calming time after a huge few months of major events for MS Queensland. However behind the scenes there is always much being achieved by the team at MS Queensland, across every department. Recently, I had the opportunity to represent PwMSQ at a major fundraiser in the Ipswich area. This was a basketball evening, and along with Julie Hanlon, Community Relations Coordinator, we had a great night and I was able to speak on behalf of MS Queensland and all of us living with MS. Also recently, I joined the Sunshine Coast group at their meeting, and met with the representative Grace from PWD (People with Disabilities) Australia – an Advocacy group for people with disability. Advocacy is an important issue that will be even more so with the implementation of DisabilityCare Australia. It is worthwhile to have a look at the Self Advocacy section on the MS Queensland website www.msqld. org/how-we-help-2/advocacy/selfadvocacy to see how you can advocate for the issues that are important to you.
Recently, there was an annual MS fundraiser at the St Lucia Golf Club, one that I have attended for the past three years. This started out as being a one-off event with MS as the charity, but we have been graciously given this day for the fourth year by a group of businesses in Brisbane. All support groups will now have had contact with MS CEO Lincoln Hopper regarding the statewide Queensland People with MS Support Group Forum, supported by the Ann Langley Scholarship and MS Queensland Annual Conference on 7–8 November. Many support groups have already responded to Natalie Walsh regarding attending the forum to have their group represented. I know everyone will be excited about being a part of a Queensland wide gathering of people with MS. If you have any queries regarding the forum, please contact Natalie Walsh on 07 3840 0823 or natalie.walsh@msqld.org.au Jenni, PwMS Support Groups Chairperson
If you have any questions about our support groups and how we can assist you, please contact me at jennifersaunders3@bigpond.com
MS LIFE – SPRING 2013
From the Chairperson of PwMS Support Groups, Jenni
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Unless otherwise stated, the views expressed in MS Life and submitted photography are those of individual authors and MS Clients, and not of MS Queensland. MS Queensland does not expect or invite any person to act or rely on any information, statement or opinion in MS Life, and readers should make and rely on their own inquiries, and obtain professional advice, before making any decisions or giving any advice arising out of any such information, statement or opinion. Neither MS Queensland nor any of its employees, agents or contributors shall be liable for any errors or omissions in any material in MS Life, and in no event will MS Queensland or any of its employees, agents or contributors be liable for any loss or damage arising from reliance on any information, statement or opinion in MS Life. Apart from any use permitted under the copyright act, no material in MS Life may be reproduced or communicated to the public in whole or in part without written permission from MS Queensland or the relevant copyright owner. Š 2013 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.