MS Life Winter 2014 by MS Queensland

MSLIFE. WINTER 2014

MS QUEENSLAND’S PREMIER MAGAZINE FOR PEOPLE LIVING WITH MS

AWARENESS MONTH How Queensland helped spread the word about MS this May

SEEING MS: Exposing the invisible disease

pg. 04

pg. 06

pg. 12

pg. 20

Prof Giovannoni’s MS research update

Working with MS feature

Our MS Heroes announced

New service MS Webinars

LETTER FROM THE EDITORS

THANKS FOR YOUR

FEEDBACK Dear readers, Another World MS Day has been and gone – but not without a global awareness campaign that educated everyone about the importance of ‘access’ for people with MS. Our World MS Day ambassador Gary Allen, who has been living with MS since 2000, summed up his own access barriers by saying “wherever you are on your MS journey, accessing MS Queensland services actually makes a huge, positive transformational effect on your life. I wish I could go back and talk to the person I was early on in my journey and say ‘sometimes help is just help – get in touch with MS Queensland rather than try to struggle through these things on your own’.” You can read more about World MS Day, our MS Heroes and the Australian ‘Kiss Goodbye to MS’ campaign on pages 11 to 14. In other news, our 2012–13 Annual Report recently won the top prize in the national PwC Transparency Awards for our excellence in reporting. This means we are one of the most transparent charities in Australia in how we report on our strategy, governance and financial position. Please read and download our award-winning Annual Report by visiting our website www.msqld.org.au

A huge thank you to everyone who provided feedback on what you like and don’t like about reading MS Life. We were pleased with the number of responses from people living with MS across Queensland. Here’s a snapshot of what you said: •4 M ost readers were happy with the information shared through our cover stories, regular columns (Questions with Tim, Advocacy with Natalie and MS Support Groups Update) as well as positive stories shared by people living with MS. •4 O ur readers wanted to see more information about MS research so we’re hoping to include more research articles in future editions. Check out page 4 in this edition for our research articles on Professor Gavin Giovannoni from the UK and this year’s research grants awarded in Queensland by MS Research Australia. •4 O ur InfoLine MS resources, information on the services we offer, and stories from people living with MS all ranked highly of what our readers would like to see more of. We’ll continue to bring you more informative stories of this nature. If you were unable to provide feedback and would like to there is still time. Please feel free to email us your feedback at any time on mslife@msqld.org.au

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 Cassie and Melanie Editors, MS Life

If you’d like to stay in touch with MS Queensland’s activities, events and physiotherapy programs please visit our: www.facebook.com/msqld

MS LIFE – WINTER 2014

youtube.com/user/MSAustraliaQ

Want an MS question answered? 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 Monday 30 June 2014.

www.twitter.com/msqld

www.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 1800 287 367 or visit www.msqld.org.au

CONTENTS WINTER 2014

As our Editors have alluded to, MS Queensland recently took out the top award in the national PwC Transparency Awards. To put this achievement into real terms; it places us as one of the most transparent charities in Australia. Not bad for a small Queensland based organisation. In life and in business, trust is everything – and that is just as true for MS Queensland: trust between our organisation and supporters, donors and suppliers; with government; with staff and volunteers and of course and most importantly, with people living with MS.

COVER STORY PG 16 ith on, Living w Tim Fergus

Exposing the invisible disease: helping others ‘see’ MS .

PAGE 2–3 Letter from the Editors Thanks for your feedback From the CEO PAGE 4–5 England’s Professor Giovannoni’s MS research update MS Queensland named Australia’s most transparent charity MS Research grants awarded to two Queenslanders RENEW your membership

Living with multiple sclerosis can be a terrifying journey of uncertainty, where the not-knowing-what-might-happentomorrow can sometimes be as debilitating as the disease itself.

PAGE 6–7 MS and employment

So alongside hope, trust is probably the best thing MS Queensland can offer to people living with MS: trust that we will do what we say; that we will act as we should; and trust that we will be there for them for as long as they want us to be.

PAGE 10–11 Exercising in the Redlands We are listening Kissing Goodbye to MS!

Being open, honest and accountable – being transparent – I believe, are the bedrock of building and keeping trust. So our recent PwC Transparency Award means so much more than the prestige, reputation or even money. It recognises that MS Queensland has taken the risk of being vulnerable – of opening up ourselves to critique and review – and in turn, we hope, to further deepen the trust we have with those that matter most to us.

PAGE 8–9 Servicing Queensland

PAGE 12–13 MS Heroes announced ‘Access’ barriers raised on World MS Day PAGE 14–15 Celebrating Living Positively with MS Energy feedback Granston Lodge starts a herb garden PAGE 16–17 Seeing MS: exposing the invisible disease Client in focus PAGE 18–19 Events that help people living with MS

And to win this award up against so many other great and amazing organisations who are equally making a difference in this world is truly humbling.

PAGE 20–21 New MS Webinars Advocacy with Natalie How Angela lives positively with MS

Best wishes,

PAGE 22–23 Questions with Tim MS Resources MS Support Groups update

Lincoln, CEO

PAGE 24 Calendar of events

Acknowledgement: We wish to thank Australian comedian, Tim Ferguson for the use of his image on the cover of this publication as part of the Seeing MS campaign. Photo by Matt Hoyle.

MS LIFE – WINTER 2014

FROMthe CEO

England’s

Professor Giovannoni’s MS research update

Prof Giovannoni pictured here with our Director of Services Karen Quaile

In March, international guest speaker and leading MS researchers from the United Kingdom, Professor Gavin Giovannoni, visited Brisbane to share an update on MS research to our clients and staff.

MS LIFE – WINTER 2014

issues related to optimising MS disease modifying therapies. His current research is focussed on the Epstein Barr Virus (EBV) as a possible cause of MS, as well as MS related neurodegeneration, MS biomarker discovery, MS clinical outcomes and immune tolerance strategies. His team focus on translational MS research and operate an active clinical trial program in the UK. Joining us at the Victoria Park Golf Course in Brisbane, Professor Giovannoni shared several MS research updates from around the world. He believes that there is a new shift in the way that we – people living with MS, researchers and doctors – are thinking about treating MS. We know that MS damages the size of the brain (‘brain atrophy’) and Professor Giovannoni firmly believes people need to know the hard facts about the range of treatments available so they can make informed decisions before too much damage is done.

Professor Giovannoni has an extensive and distinguished medical career, working in many highly regarded neurological health services in the UK. Appointed to the Chair or Neurology at the Blizard Institute, Barts and The London School of Medicine and Dentistry in 2006, he then took over as the Neuroscience and Trauma Centre Lead for the Blizard Institute in 2008.

His personal connection to MS started with a father who suffered renal failure. Professor Giovannoni suspects that his father also lived with an autoimmune disease of the kidney but by the time he presented to the doctor, it was too late to treat it. This led to his strong interest in autoimmune diseases, specifically MS. He now works hard to raise awareness in the global MS community to show that the disease can be treated effectively if treatment is sought early on.

Professor Giovannoni’s clinical interests include MS and other inflammatory disorders of the central nervous system, with particular interest in clinical

To view Professor Giovannoni’s entire hour-long presentation, please visit our YouTube channel at www.youtube.com/user/MSAustraliaQ

MS Queensland named Australia’s most transparent charity We were delighted to take out this year’s PwC Transparency Award for excellence in reporting. We were awarded the top prize in the small to medium organisation category, up against some tough competition. Our most recent annual report was heralded by the judges as having the “best risk management reporting in the competition.”

Our C Mark EO, Linc oln H Read in o Respo g, PwC’s pper with nsiblity Corpo rate Partn er

Australian charities are recognised with the most rigorous and transparent reporting on financials, governance and strategy. It’s taken MS Queensland three years of hard work to take the top gong. Huge thanks to everyone who was involved in this fantastic achievement! To view and download a copy of the award winning report please visit our website at www.msqld.org.au/msresources/our-annual-reports

Two local budding MS researchers, Ms Katherine Sanders from Bond University and Dr Anna Hatton from the University of Queensland, have been awarded research grants through MS Research Australia’s latest funding round. This year MS Research Australia grants totalled $1.537million and will help fund eleven projects across Australia. Here’s a brief summary of Katherine and Dr Hatton’s work.

THE EFFECTS OF PROLONGED WEAR OF TEXTURED SHOE INSOLES ON WALKING IN PEOPLE WITH MS Dr Anna Hatton, University of Queensland Total funding awarded: project grant of $120,000 Duration: 3 years Dr Hatton will run a clinical trial to test whether wearing textured shoe insoles may increase sensory feedback to improve the gait of people with MS. Walking problems in MS are often caused by a combination of symptoms, such as altered function of muscles and nerves and poor sensation on the soles of the feet. Dr Hatton will examine whether wearing a specially designed shoe insole, which enhances sensory information at the feet, could help people affected by MS to walk better.

EPIGENETIC SIGNATURES OF MS: FROM BRAIN TO BLOOD Ms Katherine Sanders, Bond University Queensland Total funding awarded: scholarship of $96,000 Duration: 3 years Katherine will profile molecules that control gene activity in tissue taken from MS lesions in the brain and body fluids to develop biomarkers for MS prognosis. MicroRNAs (miRNAs) are molecules used by cells to control gene activity in different cell types. miRNAs are known to play roles in tissue growth and maintenance and changes in miRNAs have been shown to play a role in a number of diseases. Since miRNA molecules are remarkably stable, there’s great potential for them to be used as biomarkers to diagnose and predict disease outcome in MS.

It’s that time of year again – membership renewal time. Membership with us, which is just $33 a year, helps us provide even more important information and education about MS and leading MS research. To become a member or renew your membership by 30 June, simply contact us on mssociety@msqld.org.au or call 07 3840 0888. On behalf of all Queenslanders living with MS, we look forward to your help in creating a future free from MS and its devastating impact. Edition

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RENEW S U WITH E BEFOR E 30 JUN ST FOR JU $33

Annual Ordinary Membership $33.00 (inc. GST) (1 July – 30 June) Life Membership $330.00 (inc. GST) (Life Membership can only be granted following application for Ordinary Membership)

MY pERSONAl DETAIlS ARE AS fOllOWS: Full Name ........................................................................................................ Address ........................................................................................................... ........................................................................................................................ Postcode ................................................ Phone No ......................................... Email ............................................................................................................... Date of Birth .................................................................................................... plEASE INDIcATE YOUR INTEREST IN MS QUEENSlAND I have MS A family member has MS I know someone with MS

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

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

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

(All donations $2 and over are tax deductible)

pAYMENT DETAIlS: Please make cheques payable to Multiple Sclerosis Society of Queensland OR please charge my Visa M/Card Amex Diners Card No __ __ __ __ / __ __ __ __ / __ __ __ __ / __ __ __ __ Expiry Date__ __ / __ __ Name on card .........................................................

“In our last edition of MS Life we mentioned the specific contribution of Ann Langley in the leadership of People with MS Support Groups in Queensland. Over the years there has been a number of significant leaders however, including those who initiated the very first support group back in the mid 1980’s. Along with Ann, we are deeply appreciative of Pat Cartwright, Yvonne Kelly, Jan Badham, Ken Webster-Hancock, For more information on current research projects Trevor Farrell and most recently Jenni Saunders for their tireless in Queensland please visit our website at commitment to MS Support Groups in Queensland. Their strong www.msqld.org.au/about-ms/ms-research legacy of leadership continues through the dozens of support groups now operating today.” Lincoln

Hopper,

CEO

Return this form with your payment to MS Queensland using the enclosed Reply Paid envelope. Thank you for your support.

Services are delivered to registered clients on the basis of individual assessment and identified needs. Membership does not automatically entitle you to receive services – people with MS must register as a client and provide proof of diagnosis. For more information call the Information Line on 1800 177 591.

WWW.MSQlD.ORG.AU

MS LIFE – WINTER 2014

Dr A Hatton & Ms K Sanders

YOUR MEMBERSHIP

JUNE

MS research grants awarded to two Queenslanders

Renew

AND

Employment

Working with MS Our Manager of Community Services, Marg Hegarty, pictured with Sandy, Dehra and Maria

Below is a list of our upcoming working with MS workshops. In the future we hope to bring these workshops to an even broader community through our new online MS Webinar series. MS LIFE â&#x20AC;&#x201C; WINTER 2014

UPCOMING WORKSHOPS:

AUGUST

September

October

November

Townsville Working with MS

Sunshine Coast Working with MS

Brisbane North Working with MS

Logan Working with MS

For more information on planned workshops for 2014, call our InfoLine on 1800 177 591 or visit our website at www.msqld.org.au/how-we-help-you/ ms-events-near-me

Our ‘Working with MS’ workshops

disclosure

To help the MS community, we have developed a comprehensive ‘Working with MS’ workshop which is run in a number of locations across Queensland each year. The workshop is facilitated by our Manager of Community Services, Marg Hegarty, along with guest speaker representatives from Employment Options and Maurice Blackburn Lawyers.

“Should I disclose that I have MS to my employer? If I’m employed when diagnosed with MS, what responsibilities does my employer have to assist me and make modifications to my role or workplace if required over time?”

The aim of the workshop is to give people with MS the tools to make informed decisions about employment and planning for their future. From deciding whether to disclose an MS diagnosis or understanding the responsibilities of your employer once you have disclosed your MS, our workshop best suits those people who are currently employed, seeking employment, or people who have recently left their place of employment due to MS related issues. Topics covered in the two hour workshop include: common issues affecting people with MS in the workplace, the pros and cons of disclosure, workplace rights and responsibilities, support services, superannuation and insurance.

These are just some of the questions we often get asked. In Australia today there are more than 23,000 people living with MS. More than 85% of these people are of working age at the time of their MS diagnosis. In a 2012 report, the Australian Bureau of Statistics* highlighted the impact of MS on employment; with data showing that over 62% of Australians living with MS have some form of restriction on gaining or maintaining employment. Early intervention in the workplace, once being diagnosed with MS, has proven to be effective in assisting people to remain in work. Evidence also shows that employment is directly linked to a person’s quality of life and general wellbeing. Source: ABS, 2012

We recently held our ‘Working with MS’ workshop on the Gold Coast with a mix of people who have disclosed their MS to their employer, as well as people who are still deciding on whether they should. Here are a couple of their stories:

Sandy, diagnosed with MS five years ago – Midwifery and Nursing Director, Women’s and Newborns Health and Paediatrics Health, Queensland Health.

Maria, diagnosed with MS 10 years ago – Account Manager, Master Engraving Company.

“Before I attended the ‘Working with MS’ workshop I had no idea about the ‘mobility allowance’. I’m actively seeking work, and to hear that I’m entitled to the mobility allowance – despite previously being denied – gives me hope and has really opened my eyes. I’m now interested to find out more information and it’s great to hear that I can call Employment Options for a free consultation and to discuss my current employment situation. This is the first time I have attended one of MS Queensland’s workshops. I felt so comfortable in the room and everyone was very encouraging. It was great to talk to other people with MS going through similar employment issues and to hear that there is a network of support available to me. Dehra, diagnosed with MS 19 years ago – mother of two, currently seeking employment. *Since the Gold Coast workshop in March, Dehra has secured employment.

If it wasn’t for being proactive and involved with MS Queensland I wouldn’t have known about any of the services and support available. My RSC is great and has opened my eyes to all the information and education workshops available. You get to a point where you need information and support. By linking up with a support worker from Employment Options, I now have access to cooling vests and neck packs that I can leave at work and use when my body becomes overheated. I’ve been blown away by the MS support MS Queensland offers; it’s really broadened my awareness.”

MS LIFE – WINTER 2014

I was already working for Queensland Health five years ago when I was diagnosed with MS. Unfortunately my husband is in-between jobs at the moment so I feel the added pressure of maintaining a regular income to support my family. Luckily for me, my workplace has been extremely supportive of my MS. A staff member from our occupational health and safety department assessed my workspace and I have the flexibility to work from home on those days when I’m feeling off. I found the ‘Working with MS’ session particularly interesting on superannuation and eligibility for healthcare cards. It was extremely helpful and nice to chat with other people living with MS who are in the workforce.”

SERVICING QUEENSLAND meet our REGIONAL SERVICE team

Over the past year there have been a number of changes to the Regional Service Coordination (RSC) team in Queensland. What better time than now to re-introduce you to this service and the unique role the RSC team plays in supporting people living with MS across our vast State.

Emily Mussap North and Far North Queensland

Lone Haywood Brisbane West

Lorraine Brosnan Brisbane North

Tas Saywell Sunshine Coast and Central Queensland

Our Regional Service Coordinators (RSC) are the first point of call for all newly registered clients and frequently for those who are newly diagnosed with MS. RSCs are unique in that they have specialist knowledge of MS and health, community and the disability sector.

Craig Rowley Brisbane South and Inner Brisbane City Janice Wheeler South West Queensland

MS LIFE â&#x20AC;&#x201C; WINTER 2014

Sharyn Shields Logan City and the Gold Coast

Name: Janice Wheeler Region: South West Queensland Number of clients: 249 How long have you been with MS Queensland? 12 years What is the best about your job? part Connecting people with MS and instilling hope in their lives.

Name: Sharyn Shields Region: Logan and Gold Coast Number of clients: 343 How long have you been with MS Queensland? Over two years What is the best part about your job? Working collaboratively with clients and having the opportunity to make a contribution towards their journey.

Name: Craig Rowley Region: Brisbane South and Inner Brisbane City Number of clients: 370 How long have you been with MS Queensland? 13 years What is the best part about your job? Hearing and seeing the positive responses from clients who I have assisted in some way to improve their quality of life.

The needs of people living with MS vary over a lifetime and so does the role of the RSC. Following the diagnosis of MS, the RSC will engage with individuals through the provision of information and support around MS, symptom management, exercise and physiotherapy, psychological support, employment and work related matters. If an individual’s needs change the RSC may take a more active role in informing and advocating for services in an environment where resources are scarce. This may include in home support, equipment, modifications in the workplace or home or respite for those in a caring role. They are frequently engaged in a very practical way such as securing funding for services required or enabling individuals to access resources they are entitled to. Essentially they work collaboratively with clients, health, community and service providers to engage the best possible support available to assist people with MS in addressing their current needs.

Our challenges One of the challenges faced by the RSC team is the changing availability and nature of services in the community sector. As each RSC works in a designated region, the challenge is to keep abreast of both local and state/federal initiatives. In the current political climate these changes are frequent and often more restrictive for our clients. Another challenge is simply balancing the demand for this valuable service on a daily basis with existing resources. Seven staff are employed throughout Queensland with over 2,100 registered clients. To best meet our clients’ needs, RSCs are available on an ‘as needs’ basis. Clients living well with

Name: Tasman Saywell Region: Sunshine Coast and Central Queensland Number of clients: 395 How long have you been with MS Queensland? Four and a half years What is the best part about your job? Working with people with MS to reduce the impact MS has on their life.

Name: Lorraine Brosnan Region: Brisbane North Number of clients: 370 How long have you been with MS Queensland? Three months What is the best part about your job? So far the best part is meeting and learning from clients, and being able to support them.

“My RSC has been very knowledgeable and helpful. He always treats me respectfully and has helped me through some very trying times. I feel like I could contact him at any time my situation changes.”

RSC client, Sunshine Coast, 2013

MS will need little contact, while others require information and support on a more intense basis or at different points as their MS needs change.

Expanding our reach We currently have seven RSCs based throughout Queensland and we have a commitment to providing this support more locally and more broadly across the State. In 2012 we opened the North Queensland office followed by the Brisbane North office in 2013 and the Gold Coast office in 2014. This has allowed our RSCs to meet more readily with their clients and has built stronger relationships with the local MS community and healthcare providers. We are currently in the process of planning a new RSC position in the Central Queensland region during 2014–15 to provide a more locally based service to clients in the area. This will also enable us to realign the current RSC region to reduce each regions client numbers.

How do I contact an RSC? If you are in need of support, information or could benefit from this service, the first point of contact is through our InfoLine by calling 1800 177 591. Our website www.msqld.org.au is also a great way to gather information about our services in your local area.

Name: Emily Mussap Region: North and Far North Queensland Number of clients: 187 How long have you been with MS Queensland? Four months What is the best part about your job? I’m embracing the opportunity to learn about MS and help guide my clients to the best quality outcomes.

Name: Lone Haywood Region: Brisbane West Number of clients: 195 How long have you been with MS Queensland? I have just been appointed. What is the best part about your job? I guess I will soon discover this!

MS LIFE – WINTER 2014

what our RSC’s do

EXERCISING IN The

REDLANDS

In our Summer edition of MS Life, we announced a new physiotherapy service that started in the Redlands area called the ‘step-by-step’ exercise program. The Redlands exercise group was setup in partnership with the YMCA gym at Victoria Point in October 2013 with MS Queensland senior physiotherapists delivering an eight week exercise and education program for people with MS. Since completing the program, a number of our clients have continued to attend the gym on a weekly basis under the direction of a YMCA personal training team and distant support from our Dutton Park physiotherapy team. In MS, exercise has been shown to improve function, quality of life, general health and wellbeing and can help prevent falls and reduce MS related fatigue. Designed with sustainability in mind, the

MS LIFE – WINTER 2014

‘step-by-step’ exercise program was created to challenge balance, strength and control and equip clients with the confidence to continue to attend the gym on a regular basis with confidence. Aaron, head personal trainer at YMCA Victoria Point, says that the best part is seeing the enjoyment factor on clients faces; “I’m amazed by their improvement over the last couple months and proud of what they have achieved. Most of these guys wouldn’t have felt comfortable in a gym environment prior to the program and to see their confidence now is great.” If you live in the Redlands area, we would encourage you to come along Friday morning at 11:30am and participate in one of the exercise sessions.

Here’s what one of our clients who has done the program said: I’ve been a part of the Redlands MS Support Group for a few years and when we heard about the new step-by-step exercise group, we were glad to have MS Queensland offer this service in our local area. Attending weekly sessions has helped improve my mobility and weight and has encouraged me to take part in a regular exercise regime. The personal trainers are great with us as they know how far to push us without exceeding our fitness level. They also teach us exercises that we can adapt to our homes such as stretches and using the treadmill. I can now stand unaided!” Rob Rance, diagnosed with MS four years ago.

New location announced After the success of the Redlands ‘step-by-step’ exercise program, we are pleased to announce the commencement of ‘step-bystep’ exercise group in the Logan region later this month. For more information on this service, please contact Linda Wilson-Marks from our Physiotherapy Department on 07 3840 0841.

we are listening Thanks to your feedback, our physiotherapy team has introduced new exercise groups in Victoria Point and Logan on Brisbane’s south. We sent more than 200 surveys to clients in these regions to measure the need for an MS-specific local exercise group, as well as asking for suitable venues, days and times. We were very pleased with the response received. Your input, combined with careful planning, research and extensive community collaboration has seen the development of these exercise groups for people with MS in the area. Thank you for taking the time to respond to our surveys, we love hearing from you and are committed to delivering programs that best meet your needs.

KISS GOODBYE TO MS – MAY 2014

KISSING goodbye to MS!

Stuart Horton who cycled for MS

around Gladsto ne

How we celebrated MS Awareness month

Our sincerest thanks to the following supporters who illuminated their exteriors during the month of May to shed light on MS: King George Square, Kurilpa Bridge, Sir Leo Hielscher Bridges, The University of Queensland, Wintergarden, Skypoint Observation Deck, Toowoomba City Hall and Paronella Park. Throughout the month, thousands of Queenslanders also puckered up with red lipstick as part of the national Kiss Goodbye to MS campaign. From walking the Camino de Santiago in Spain to organising cake bakes, people across the State wore red clothing and red lipstick to help Kiss Goodbye to MS.

Stuart Horton’s wife, who was diagnosed with MS in 2005, dared him to step outside his comfort zone and for every $100 he raised, he’d have to paint a fingernail red. He smashed his fundraising goal and went on to organise to cycle around Gladstone to raise awareness of MS. Stuart thanks everyone for their support for a cause that is very close to his heart and means so much to us all. A big thank you to all our Queensland kiss fundraisers who got involved this year. It’s great to see everyone join together with MS on our lips; those living with MS, those affected with MS, and those who know nothing about MS but care enough to make a difference! To read more about MS Awareness Month and how you can help raise funds to support research projects in Australia visit www.KissGoodbyetoMS.org MS LIFE – WINTER 2014

This year, eight iconic buildings and bridges across Queensland once again proudly turn red to raise awareness during MS Awareness Month.

Diagnosed with MS in 2001, Amanda Grobbelaar from Mackay is thankful every day that she still has her mobility and has even been motivated to start running. To help Kiss Goodbye to MS she organised a 5km sunset fun run and ran a half marathon in Mackay. “Hopefully our humble efforts to raise funds to find a cure will give all people living with MS back their ability to walk and run and dance as if nobody is watching.”

11 Michael & Frances Schramm walking the Camino de Santiago, Spain

MS awareness month special

heroes ANNOUNCED It gives us great pleasure to announce this year’s MS Heroes...

In 2011 our MS Heroes awards program launched to acknowledge and celebrate the contributions of Queenslanders who are ‘heroes’ to the multiple sclerosis cause. Now in its fourth year, there are five categories that recognise those individuals who are heroes in their own respective ways.

MS HERO CATEGORIES

This year, we received nominations from across Queensland and the judging panel found it very difficult to choose the winning recipients.

Young Person of the Year

The winners of the 2014 MS Heroes awards were acknowledged and celebrated at a reception hosted by Her Excellency, the Governor of Queensland and MS Queensland Patron, Penelope Wensley AC on the eve of World MS Day.

This award is given to the person who is young (any age up to 40) or simply young at heart and living positively with MS.

Advocate of the Year This award is given to the person who has been an outstanding champion of the MS cause, whether through contacting a Government representative or showing support for the wider MS community in Queensland.

Employer of the Year This award is given to the person who has been an outstanding champion by enabling and supporting an employee who is living with MS.

Volunteer of the Year MS LIFE – WINTER 2014

This award is given to the person who has demonstrated outstanding volunteer services and contributions to the MS community.

Carer of the Year This award is given to the person who has shown outstanding selflessness to care and support for a person living with MS.

Young Person of the Year

Shannon Kerr

Shannon met his wife Rachel when they were just 15 years old, two years prior to her MS diagnosis. Over the past seven years, amongst all of the heartache, they have married, bought a house, started a business, worked full-time and raised their beautiful 19 month old. Having been ‘the rock’ for his wife by giving tireless hours towards raising awareness of MS in his local community and helping organise local fundraisers in Rockhampton, the judges were impressed with Shannon’s ability to impact the lives of countless others living with MS. His community spirit and positive attitude towards life is particularly admirable. Carer of the Year

Adrienne Elvery Adrienne already had a solid knowledge of MS before her husband was diagnosed, through a relative also living with the disease. She has offered constant support for her husband for

over 14 years – taking on the role of primary carer, mother, head of the house, cook, cleaner, manager of their social life and still manages to maintain a job as an accountant. She portrays a strong sense of love and commitment and deserves to be thanked for her selfless caring role over a number of years, often in the face of challenging times. Advocate of the Year

Eleanor Rigden Eleanor received an incredible ten nominations. At just 23 years of age, the judges commended her positive outlook on life and strong interest in social advocacy prior to becoming an MS Ambassador, as well as her volunteer work for the Breast Cancer cause and refugee advocacy. They were impressed by her outstanding accomplishments, having worked with a number of not-for-profit organisations including MS Queensland, and her active involvement and commitment to raising awareness of the MS cause.

ms heroes – MAY 2014

‘Access’ barriers raised on World MS Day On Wednesday 28 May we all celebrated World MS Day. A day where the global MS community joined together to talk about the inequality of ‘access’ for people living with MS. This included barriers to accessing the community, MS treatments and medications and equal and fair access to employment. More than 60 countries took part in awareness and fundraising activities including Canada, who lit up Nigara Falls red; Germany, Luxembourg and the UK who ran large-scale access campaigns; and Poland, who held a press conference and public debate on World MS Day. Closer to home, MS Australia met with key parliamentarians and decision makers in Canberra to discuss key ‘access’ issues for people with MS on the back of the Budget announcement. Prior to the Budget, Prime Minister Tony Abbott had pledged his support for World MS Day via a video support message, which is now doing the rounds on YouTube. In Queensland, we ran a large scale media campaign sharing the ‘access’ barriers you face in your communities and released a powerful YouTube video of Gary Allen, a husband, father and University worker who has been living with progressive MS for a number of years. In the film Gary talks about how he avoided ‘access’ to local support and help when he was first diagnosed, and his wish that he could go back in time and say to his old self to connect with MS Queensland. Every year World MS Day takes different theme and is celebrated by the more than 2.5 million people living with MS across the globe. For more information visit www.worldmsday.org

Employer of the Year

World Surfaris This year’s winning nomination recognises Shaun and Jacqui, the owners of World Surfaris on the Sunshine Coast, who have shown not only compassion towards an employee living with MS, but a willingness to learn more about the disease. Their ability to go above and beyond, time and time again, is very worthy of this year’s employer award. Volunteer of the Year

Dawn Toomey and Beatrice Hawkings

behind the scenes and do not seek any glory for their service. To read the full nominations of our five recipients, visit our website www.msqld.org.au

World MS Da y suppor and his son, ter Gary Allen Connar

If you would like more information on our 2015 MS Heroes program, please contact our awards team via email awards@msqld.org.au or call 07 3840 0825. sland, of Queen Govenor S Advocate of the llency, the M Her Exce Wensley AC and n pe nor Rigde Ms Penelo Year Elea

MS LIFE – WINTER 2014

This year, the award goes to Dawn Toomey and Beatrice Hawkings, two ladies who have volunteered their time at MS Queensland’s high-care accommodation facility Granston Lodge for more than a decade. The judges felt that their long-term commitment to volunteering and the number of lives they have impacted over the years, most worthy of recognition. They are both caring women who often work

13 This year’s MS Heroes with Her Excellency, the Governor of Queensland and MS Queensland Patron, Penelope Wensley AC, our CEO Lincoln Hopper and Chairman Jon Loraine

MS awareness month special

celebrating

living positively WITH MS Three years ago our wonderful MS Ambassador, Ipswich Mayor Paul Pisasale shared with us the benefits he found from sharing his story of living with MS. He has since been calling on others to share their stories of how they live positively with MS. ‘Living Positively with MS’ is a lifelong mantra for many people and these powerful words mean different things to different people. For some it may mean adopting a healthier lifestyle, for others it may mean learning more about MS through reading as much information as possible or connecting with MS Queensland’s range of services. This year, the recipient whose story was selected to share lunch with Mayor Pisasale was John Pesch and his wife Christina from the Redlands. John’s story touched on living joyfully regardless of what life brings, the value of sharing, his selfless attitude to life and the value of slowing down. We hope that you will enjoy sharing in John’s ‘Living Positively’ story below. So my story makes sense I’ll begin with a brief outline of what happened in the years prior to my MS diagnosis in 1983. I was married in 1973 and fairly early on in our marriage, my then wife Ada developed schizophrenia.

For the next 20 years I helped her to manage this insidious illness. During these years I learned that the best way to live joyfully and be grateful for the blessings that we do have, one has to be prepared to accept the good with the bad. I was diagnosed with MS about 10 years into our marriage. Back then I wasn’t made aware of any available treatments and my neurologist simply advised me that fatigue would be a challenge, and that I would need to take time out when I felt it was needed. Ada had enough problems of her own and wasn’t able to handle a husband who had problems as well. By the grace of God my MS remained a sleeper and did not really have much impact on my day-to-day activities. During that time I would have one or two attacks a year involving pins and needles in my feet and I was noticing that each time. Now that I look back, I made no effort to seek out any advice or counselling. Helping Ada manage her illness and assisting to raise our two young children as well as working in a demanding job and I had no desire or time to give much thought to my MS. I never saw any of these matters as being stressful but simply saw them as challenges.

MS LIFE – WINTER 2014

14 This year’s Living Positively entrants with Mayor Paul Pisasale and CEO Lincoln Hopper

In 1994 Ada died suddenly and the emotional impact of that dramatic event caused my MS to move up a notch and from that day onwards it continued to get worse. It wasn’t until I met and married a wonderful caring woman, Christina, who gently guided me into taking my illness more seriously that the progression began to slow. I began seeing an neurologist regularly and started on medication and then in 2002 I wisely decided to retire at the age of just 51. It was then, that the MS really slowed down because I significantly reduced my stress levels. Being a Christian has helped me to gracefully and joyfully accept the challenges that life can throw at us. Throughout my life journey I focus on the many blessings that I have and don’t waste too much time thinking about the negatives. Instead of saying ‘why me,’ I say ‘why not me’! It is at the time of greatest hardship or difficulty that one has the opportunity to learn and grow so I thank God for the challenges that he has enabled me to learn from over the years including MS. To read other stories of people who live positively with MS, visit our website www.msqld.org.au

Granston Lodge starts a

garden

herb Thank you to everyone who participated in our energy survey. We received a great response and by providing this valuable feedback, you’ve shared information that will continue to help inform the advocacy efforts we provide on behalf of people living with MS. Without your input we simply cannot provide current energy information, nor keep your concerns at the forefront of the mind of our politicians and energy suppliers. The survey has been a great resource; it will allow us to share and feed back into Queensland Government meetings that we attend, and represent the critical issue of energy for people living with MS. Did you know MS Queensland participates in a number of electricity network distributor workshops and national consumer energy forums? Providing us with information of your situation allows us to represent the impact of energy and what it costs the MS community. Never underestimate the value of your feedback – it is put to great use! Interestingly, 65% of respondents said they didn’t understand their energy bill which may lead to higher energy use. Over half the respondents said they would like to learn more about the energy market. Please continue to look out for the energy column in MS Life and information on our website.

Everyone likes to cook with amazing fresh herbs like basil, parsley, rosemary, thyme and oregano. Over the past few months, the residents at our Granston Lodge accommodation facility have been putting their green thumbs to the test, setting up a pretty impressive herb garden in Dutton Park. Using locally sourced materials, including gutting out an old donated BBQ and turning it into an accessible garden bed, residents Gary and Richard (pictured below with our staff member Matthew Powell) spend time a few days a week watering, potting and maintaining this ever-growing garden. One of Granston Lodge’s Lifestyle Assistants, Matthew Powell said “the herb garden project has been really rewarding to be a part of. While Gary and Richard enjoy researching and planting new herbs, we’re able to use recycled materials to be more sustainable. As the herb garden gets bigger, we’re hoping the Granston Lodge kitchen will start using our locally grown ingredients in its cooking.” Other parts of the garden also include lemon, orange, lime and mandarin trees as well as a number of roses. A huge thanks goes to the MS Queensland Op Shop volunteers, our maintenance officer Rudi and the staff at Granston Lodge for making this project happen.

For more information please contact our Advocacy Manager Natalie Walsh on 07 3840 0823 or natalie.walsh@msqld.org.au 2014 0213 MS Queensland CAPS OL.pdf 1 14/02/2014 5:01:21 PM

CMY

MS LIFE – WINTER 2014

SEEI N G Exposing the invisible disease What happens when you put nine world class photographers together with nine Australians living with MS? An incredible, inspiring and touching photographic awareness campaign that shows the community exactly what some invisible symptoms of MS ‘look’ like to a person living with the condition. The global campaign, called ‘Seeing MS’ was created for MS – ACT/NSW/VIC by Grey Melbourne and launched online at www.seeingms.com to increase the community’s understanding of how the disease’s ‘invisible’ symptoms affect people living with MS. As experts in the field of multiple sclerosis, MS Societies in Australia are very aware of the wide range of symptoms that affect people who have MS. We also know that many of the symptoms are both ‘invisible’ and hard to explain to loved ones, friends and work colleagues. As a result, people living with MS are dealing with symptoms such as fatigue, pain, pins and needles, vision problems or lack of balance on a daily basis and can feel frustrated and alone.

Meet the people behind the symptoms The nine MS symptoms exposed in this campaign are blurred vision, pain, hot and cold, spasticity, dizziness, fatigue, brain fog, balance and numbness. Here are just a couple of the many stories from people living with MS who took part.

BRAIN FOG

It is hoped the ‘Seeing MS’ campaign will help change the public perception of the disease and promote a deeper understanding in the wider community. Nine people living with MS were approached, including comedian Tim Ferguson who is featured on our cover, to work with volunteer photographers from around the world on describing one of their MS symptoms. The result? See it for yourself at www.seeingms.com

Help capture your ‘invisible’ symptom MS LIFE – WINTER 2014

Are you looking to get involved in this campaign? Anyone with a camera can help capture and explain an invisible symptom using the ‘Seeing MS’ app. Grey Melbourne and Limehouse Creative developed the free SeeingMS app so you can download filters based on the nine symptoms in order to see and share how MS affects those living with the disease. Once you’re happy with your photo, you can share it with friends and family via your social media or post it on the ‘Seeing MS website’. Download the app from www.seeingms.com

YOU ARE NOW SEEING BRAIN FOG Described by Jessica Anderson, diagnosed with MS in 2001. Photographed by Sara Orme.

Diagnosed when she was just 12 years old, Jessica has been a role model for the young and ambitious ever since. Brain fog can make it difficult for Jessica to stick to one thought for more than 30 seconds. The brain’s ability to connect thoughts is disrupted. Concentrating in conversation or recalling a recent event can become an incredible challenge. “It’s scary, not being able to gather and make sense of your own thoughts. I myself have trouble explaining what it feels like, so I can’t expect other people to understand it. It’s not an image where I’m portrayed as a victim. I think this really personalises the condition. It puts a face to the symptom.”

pain

YOU ARE NOW SEEING PAIN Described by Stephen Papadopoulos, diagnosed with MS in 2001. Photographed by Garth Oriander.

HOT AND COLD

YOU ARE NOW SEEING HOT AND COLD Described by Dimitri Cachia, diagnosed with MS in 2003. Photographed by Jamie MacFadyen.

Dimitri Cachia is passionate about educating others through his own experiences living with MS. But often sudden, dramatic changes in body temperature can leave him feeling suffocated. “The first signs of sweat on my brow mean that I’m going to be feeling heavy in the legs and that ball and chain around my ankles is slowing me down. A picture tells a thousand words and there will most likely be a deeper understanding in the community about what this disease actually is.” To explore this creative and very ‘real’ campaign further, get involved by visiting www.seeingms.com

Glenn from Deuchar Meet Glenn Miller, our client from Deuchar (a small town between Toowoomba and Warwick) who recently accessed our financial support service and has since been able to improve access to his home. While his first MS symptoms started back in 1987, it wasn’t until ten years later that Glenn was diagnosed with secondary progressive MS. At times his MS symptoms range from severe fatigue on hot days to the more invisible symptom of incontinence. Glenn uses a wheelie walker to get around and has found his biggest barrier to ‘access’ is hills and holes in existing walkways; not ideally suitable for someone using a mobility aid. Glenn has been a client of ours for a number of years and was keen to improve the access to his home. He spoke with his RSC, Janice Wheeler, who assisted him to acquire more than $3,000 in grants from multiple agencies to build a ramp leading to his house. The grants came from Commonwealth Respite and Carelink Darling Downs, Breakaway Toowoomba and MS Queensland. Glenn also set up an interest-free loan through MS Queensland to make up the difference for the full cost of the ramp. Glenn said he often rings MS Queensland for advice and finds us “more than happy to give it.” He found the interest free loan approval process and repayments “more than affordable” to repay from his disability pension. Glenn’s advice for people with MS who are having access problem with their homes is “it’s not worth your heath and sanity not being able to move around. Have a talk to MS Queensland and see where they can help you.” For more information on our range of services and how we can help you better access your community, please contact our InfoLine on 1800 177 591 or visit our website at www.msqld.org.au

MS LIFE – WINTER 2014

Stephen is a dedicated MS Ambassador. He strives to live every day with a smile on his face. This can be difficult on some days as pain can cause him to feel a torturous burning sensation throughout his body. Different levels and types of pain can strike at any time and in any part of your body. “It’s like I’m burnt alive every day. The clothing I’m wearing right now hurts, walking in the wind hurts, showering hurts. I feel like I don’t belong in my own body because I’m such a happy, outgoing person and I feel like my body is working against me.”

HUNDREDS OF queensland ers dive in FOR M S With winter approaching it means we have come to the end of our MS Swimathon season for another year. Over the past four months we’ve held MS Swimathons in Cairns, Mackay, Rockhampton, Townsville and on the Gold Coast. We’ve seen wonderful examples of people going above and beyond for MS, both in and out of the pool, all in an effort to raise much needed funds for MS Queensland. One little guy in particular caught our eye on the Gold Coast. Cameron Middleton (pictured) is not your average

Big Dinner Party says

MS LIFE – WINTER 2014

Over 100 dinner parties have been held since March to support people living with MS. Our hosts were very creative this year with a range of different ideas including high teas, BBQs, international feasts, community gatherings and a couple of cocktail evenings.

six year old, not only can he swim amazingly well, but he has a six pack! Cameron’s dad Stephen says “he’s been swimming since he was six months old and could swim to the bottom of our pool before he was two. The most he had Camero n Middle swum before this event was four laps of ton the pool, but once he started to swim he didn’t want to stop!” Over the 12 hours, Cameron managed to swim 20 laps of the Olympic-size swimming pool – that’s 1km! Cameron was also lucky enough to swim in a relay with Olympic swimmers Melanie Schlanger and Chris Wright. Cameron raised $506.70 for people living with MS. He has already said he wants to come back next year, saying “I want to beat 20 laps – maybe I can go for 50 next year!” We’ll be holding two more swims this year in Toowoomba and Jindalee. To find a location near you visit www.MSswimathon.com.au

Many of our inspiring hosts have a family member or friend living with MS, or live with MS themselves. It was fantastic to see their friends and families supporting them and their cooking. One such host was Alysha Faulkner from Wilston whose father Pete was diagnosed about five years ago at the age of 52. Alysha said “our knowledge of MS began when dad was affected by fatigue, had difficulties with coordination, limited mobility, muscle weakness, pain and even had his hearing affected throughout his relapses.” Through her dinner party Alysha has raised $1,000 and our hosts combined

have raised an amazing $60,000! Who knew the MS community were such great cooks! For more information please visit www.BigDinnerParty.com.au

Dance MS Away

MS MOONLIGHT WALK DATE IS SET

We’re busily planning for this year’s MS Moonlight Walk which will be held on Friday 17 October at the Southbank Parklands in Brisbane. A number of people e Hooper & with MS always take part in the 5km or 10km courses. Register your MS Clinic Nurse Kay je Sat Elke interest today at www.MoonlightWalk.com.au and be the first to be notified of our discounted entry! Pretty much anything can be turned into an MS fundraiser.

All you need is the passion and you’re halfway there!

A great example is Elke Satje who came up with an idea to host a ‘Dance MS Away’ fundraiser at the Obi Obi Hall in Kenilworth. Diagnosed with MS 18 years ago, Elke turned to MS Queensland for support. Receiving great support and helping her MS journey post diagnosis, Elke wanted to give something back to MS Queensland and decided to fundraise for us in her local community. Having a passion for music and dancing, she organised local bands to come along to provide live music. She cooked up a storm, charged an admission fee and sold raffle tickets, all the while educating her friends and locals about MS. Elke’s ‘Dance MS Away’ fundraiser raised an amazing $3,450 and she already has people asking her to do it again next year. Thank you to Elke and all our other great community fundraisers across the State for your passionate support.

Ex-public servant wins $150,000 Mercedes An ex-public servant from Eltham in Peter Siz Victoria, Peter Sizeland, won our latest eland ‘Limited Edition’ Art Union and took home a new Mercedes Benz E400 Cabriolet worth over $150,000. While Peter has supported the work of MS Queensland through the ‘Limited Edition’ Art Union for a number of years, it was a single $50 ticket that won him the top prize of one of the most luxurious, prestige vehicles in the world. “When I first received the letter that I’d won by registered mail, I kept reading it thinking “is this for real?” My life has been a struggle for the past few years with my wife passing away from cancer last year – so winning the car is definitely the best news I’ve heard in years.” Mr Sizeland, an avid Mercedes Benz lover and President of the Mercedes-Benz Club in Victoria, collected the keys to his polar white E400 Cabriolet valued at $152,364 at the Mercedes Benz of Australia National Rally held in March.

For more information contact Simon Gregory, on 07 3840 0812 or simon.gregory@msqld.org.au

Over the years, our Limited Edition Art Union has raised millions of dollars to support the work of MS Queensland. For your chance to be part of the next car up for grabs please visit the website at www.mslimitededition.com.au or call us on 1800 060 210.

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MS LIFE – WINTER 2014

Ideas move more

To answer the growing needs of people living with MS across our vast State, we’ve introduced a new service called MS Webinars – providing online MS education on topics relating to MS. Depending on the topic, the MS Webinar may also be useful for your family members and close friends to listen in. As we’re trialling this new online service the topics will include, but are not limited to ‘understanding MS bladders and bowels’, ‘cognitive and emotional changes in MS’ and ‘newly diagnosed with MS.’

Benefits of our MS Webinars

New

MS Webinars available online

Introducing a new service called MS Webinars – providing online MS education on topics relating to MS.

MS LIFE – WINTER 2014

• You can learn more about MS and its varying symptoms from the comfort of your own home or workplace. • Your loved ones can also sit in and listen to the session and learn more about you and your MS. • You don’t need to travel to access our online sessions; you can listen in from anywhere like your kitchen or living room. • If you prefer, you can ask questions after the session, offline at a time that suits you.

How MS Webinars work The MS Webinar sessions are held using an online web conference system, Adobe Connect.

You click a link to register online for the MS Webinar of your choice.

You’ll receive confirmation and reminder emails in the lead up to the MS Webinar.

On the day of the session you’ll be asked to log in to access the MS Webinar

After the MS Webinar you’ll be offered the opportunity to complete a short online feedback form about your online experience. This will help us improve the service in the future.

During the MS Webinar you’ll be able to ask questions of our facilitator, view the presentation and notes they are referring to and even go back to re-watch a session at a later stage when it suits you. All past information sessions will also be available to view on our website at www.msqld.org.au

More information For more information on our MS Webinar program please feel free to contact Tim O’Maley, MS Nurse Practitioner and Manager of Specialist Education and Community Resources on tim.omaley@msqld.org.au or phone 07 3840 0855. We look forward to ‘seeing’ you in one of our online MS education sessions soon!

ADVOCACY

with NATALIE

The NDIS seems to be in the news every day and so it should for the biggest social change ever introduced to Australia! Unfortunately, a lot of the headlines we hear surround the costs and even commentary that the NDIS is ‘unaffordable’. However, information presented at the 2014 Queensland Disability Conference at the end of March and comments by Prime Minister Tony Abbott shared encouraging information including: • Queensland’s ongoing preparation for the NDIS • Prime Minister Tony Abbott clearly stating the NDIS would go ahead • feedback regarding the first review of the NDIS from the launch sites • personal stories of real and very positive experiences of people living in the launch sites • learning more about the ‘new world’ we will be living in with the introduction of the NDIS; one where everyone is in control of having a good life; and • what will it take for the community as a whole to be ready for this monumental change. However negative commentary continues so we must continue to share critical information regarding the NDIS. To help illustrate the positive and economically viable impact the NDIS will have, Every Australian Counts have put together a very important graphic showing that the NDIS will only equate to a very small fraction of our overall economy (pictured). It clearly illustrates that the cost of the NDIS is a strong investment in our nation’s future. The NDIS is also fundamentally a positive human rights move and will provide every person in our community with individual choice and control.

The NDIS is only 0.5% of Australia’s total GDP

NDIS Affordable? The real question is: Can we afford not to have it? Source: The Australian Financial Review March, 2014

Natalie, Advocacy Manager So let’s keep our passion and support for this once in a generation chance for change! If you have any queries, please contact me 07 3840 0823 or email natalie.walsh@msqld.org.au

How ANGELA lives positively with MS

I was diagnosed with MS as a young mother at 32. I suspect it was brought on by stress and anxiety from my personal life, I had a gruelling schedule of full-time employment, part-time PhD studies, housing my parents while my father received medical treatment, renovating our house with my husband and caring for our son. I also suffered two miscarriages the year that MS entered my life and it didn’t take long for my legs to stop working. There was nothing subtle about my first MS attack. It was acute, excruciatingly painful and left me in a wheelchair. I went on to have another relapse months later where relentless fatigue and nausea made it impossible to even lift my head. I focused on growing my family and it was a blessing to then fall pregnant as it gave my body time to recover. During this time I was able to complete my doctoral studies and use my research skills to investigate natural approaches to treat MS including sun exposure, Vitamin D, diet and exercise. I experimented by removing dairy from my diet, continued with my exercise and began taking Vitamin D. I gradually worked towards a wholefood, plant-based diet and was delighted to discover no new lesions. Now, almost four years after my first episode of MS, and two follow-up MRIs later, I continue to have no further MS symptoms and ‘normal’ scan results. Many in the medical community as well as friends and family have questioned my alternative approach and some even labelling it as “extreme.” So it was nice to have an MS Queensland staff member visit my house and tell me that a number of other clients also embrace more natural approaches to their MS journey. The power for ‘disease’ and ‘good health’ resides within us all and the rise of one over the other depends on which you feed. The positive role nutrition can play in helping manage your MS cannot be understated. If you have a living positively with MS story that you’d like to share, email your story to natalie.walsh@msqld.org.au

MS LIFE – WINTER 2014

SUPPORT EVERY AUSTRALIAN

QUESTIONS with TIM

SYMPTOMS what you can do to understand them Here’s something a little different for this edition. One of the things any person with MS knows is just how hard it is to explain to someone who does not have MS what the symptoms feel like – how it affects the things you do every day. Now I can take no credit for the suggestions below – I don’t directly know the people who wrote them (definitely someone with MS) but see if you can convince your partner, kids, friend, boss, colleagues to give some of these a go and send us your feedback to mslife@msqld.org.au

MS LIFE – WINTER 2014

If you have an MSrelated 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 30 June 2014.

Painful heavy legs

Apply 10kg leg weights then take a 1km walk, clean the house, go shopping and then sit down.

Painful feet

Put equal or unequal amounts of small pebbles in the bottom of your shoes then take a walk.

Loss of feeling in ARM AND/OR LEgs

Put on extra thick gloves and a heavy coat then try and pick up a pin.

Uncontrollable itching

Glue or sew small steel wool pads to the inside of your shirt, pants and underwear and wear them for an entire day.

Trouble lifting arms

Apply 10kg wrist weights and try and reach for something on the highest shelf in your house.

Urgently need to urinate

Go to a crowded shopping centre and at any given moment, you have 30 seconds to get to a toilet. Sometimes it may only be 20 seconds.

FATIGUE

Stay awake for two full days to induce incredible fatigue and then cook dinner, clean the house, walk the dog and see how you feel.

BRAIN FOG

Take a liberal dose of sleeping pills (please don’t) but stay awake. Try and function properly and think clearly.

VISION PROBLEMS

Smear Vaseline on your glasses and then wear them to read the newspaper.

Foot drop/ balance /tripping

Wear a swimming fin on just one foot and take a 1km walk.

MEMORY ISSUES

Have someone make a list of items to shop for. When you come back have that person add two things to the list and then ask why you didn’t get them. When you come back from shopping again, have them erase three things from the list and ask why you bought them.

RESOURCES

MS SUPPORT

GROUPS UPDATE

Progressive MS As most people would know we’re still searching for consistent, safe and effective treatments for people living with progressive MS. But there is still a great deal that can be done to manage your symptoms and improve your quality of life. MS Queensland has a number of resources available on Progressive MS. To find a comprehensive list of MS resources, visit our online resource centre at www.msqld.org.au/msresources

First edition December 2008

What is secondary progressive MS?

Primary Artwork v9_Layout

Page 2 1 11/01/2011 11:35

Primary progressive MS exposed Alison Whittam

Managing Progressive MS (National MS Society, USA)

From the STATE CONVENOR of PwMS Support Groups, Jenni

This is a very comprehensive resource on understanding what progressive MS is, with clear definitions and a very good overview of MS symptoms. There is a good section to help understand the role of clinical trials.

Every month in various parts of the State, a number of people with MS, their family, friends and carers, get together as a group to catch-up.

What is Secondary Progressive MS (MS Society, UK) Some people with initial relapsing MS will ‘transition’ into secondary progressive MS. This concise booklet helps people understand what this may mean for them. It recognises that there is no line in the sand for when someone has secondary progressive MS; its something that will take some time.

Primary Progressive MS exposed (MS Trust, UK) This is a very comprehensive resource to help understand primary progressive MS. It covers an enormous amount of information from diagnosis to symptoms to clinical trials. This also is written with input and many quotes from people living with MS.

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.

Some of these people with MS meet for coffee on a regular or impromptu basis. They vary in ages, interests and lifestyles, but they all have one thing in common which bonds them together for a short while in the company of friends who know exactly what’s going on. These times are shared with interesting stories of latest holiday adventures, family funnies and plenty of laughs. A few people get together to organise these monthly gatherings and it’s not always an easy task. We acknowledge the time and effort that they give to make the days interesting by organising a guest speaker, afternoon refreshments and in some cases a raffle or two. Since the MS Queensland Support Group Forum in November 2013, a number of support groups have shared their information and newsletters with us, and the team at MS Queensland are always looking for any support group information that you would like to share with the MS community. Many of us will catch up at the MS Moonlight Walk on Friday 17 October or the Toowoomba or Jindalee MS Swimathons later in the year. But until then, enjoy the cool change of winter!

If you have any questions about our support groups and how we can assist you, please contact me at jennifersaunders3@bigpond.com

MS LIFE – WINTER 2014

Mana ging Progre ssive MS changeS M anaging M ajor

MONTH OF AUGUST

17 OCTOBER

31 OCTOBER

6 NOVEMBER

MS Readathon

MS Moonlight Walk

MS Menâ&#x20AC;&#x2122;s Lunch

PwMS Support Group Forum

www.msreadathon.org.au

www.MoonlightWalk.com.au

www.msqld.org.au

7 NOVEMBER

8 NOVEMBER

23 NOVEMBER

28 FEBRUARY

MS Queensland Annual Conference and AGM

MS Swimathon Toowoomba

MS Swimathon Jindalee

MS Swimathon Gold Coast

www.msqld.org.au

www.MSswimathon.com.au

MSswimathon.com.au

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

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