MS Life Spring 2012

MSLIFE. SPRING 2012

QUEENSLAND’S PREMIER MAGAZINE FOR PEOPLE LIVING WITH MS

AQUATIC EXERCISE FOR MS

How it can make a difference in managing MS symptoms

REGINA FINDS MS HERO IN HER SON JACK pg. 5

pg. 6

pg. 10–11

pg. 16

Facebook and Twitter explained

New Carbon Tax Concessions

Heartmoves for MS

Wendy’s contribution to MS

LETTER FROM THE EDITOR

Dear readers, Welcome to Spring! I’ve just recovered from London ‘Olympic fever’ and what an interesting Olympics it was.

The games were followed by the 2012 London Paralympics where MS Ambassador Carol Cooke proudly competed in the Australian cycling team. Personally, I think Carol is one of the most inspirational figures in Australian sport. Since her MS diagnosis, Carol has thrown herself into raising awareness of multiple sclerosis and initiated the original ‘Mega Swim’ event dedicated to raising money for MS. In Queensland we run a similar event called ‘MS Swimathon’ which is heading to seven different Queensland towns before the end of June 2013.

Head to www.msswimathon.com for more information on the dates and locations of a swim near you.

Our next big fundraiser for MS in Queensland is of course the famous MS Moonlight Walk in Brisbane on Friday 19 October. It is a great leisurely and safe 5km or 10km walk around the Brisbane River that helps raise awareness (and much-needed money!) for MS and educates others on the daily impact MS can have on a person’s life. Lots of people living with MS using aids and scooters, along with their friends and families, take part in this great event each year. After the walk you can stay and enjoy the celebrations at South Bank including live entertainment, prize draws, food and drink, and special guests. To register for this year’s walk before it’s too late visit our website www.moonlightwalk.com.au As we head into Summer please be aware of your MS symptoms and how you may be affected by the heat.

Remember the Medical Cooling and Heating Electricity Concession in Queensland is available to those people living with MS on a low-income who have a medical need to operate an air-conditioner to keep cool. To apply, you must have a medical condition requiring cooling or heating to prevent the symptoms of your condition worsening (as seen in MS) and hold a Pensioner concession card or a current Health Care card. Contact us on 07 3840 0823 if you require assistance in applying for this concession.

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As always, if you have any feedback about this edition of MS Life please get in touch by emailing me at mslife@msqld.org.au

LETTER TO THE EDITOR MS LIFE WINTER EDITION Excerpt from Letter to the Editor received “Thank you for such a great edition of MS Life (Winter 2012). I thoroughly enjoyed reading about the many things MS Queensland are involved with. I was particularly impressed with the article about the NDIS rally and was glad to read that MS Queensland are actively involved with the NDIS campaign. Also, it was wonderful to read such inspirational stories about the importance of exercise when managing MS. My hat goes off to Hilton and Helen, and I’m in total agreement with Hilton when he said, “it makes a world of difference to your quality of life...” as exercise has made such a positive difference to my life!”

Wenda, MS Life reader.

Note: If you have an MS question to ask our Manager of Specialist Education Tim for the next MS Life, please email Tim at mslife@msqld.org.au before 15 November 2012.

www.twitter.com/#!/msqld

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

youtube.com/user/MSAustraliaQ www.msqld.org

Kindest regards

Melanie, Editor, MS Life

www.msqld.org

Acknowledgement: We wish to thank Regina and Jack Brook for the use of their image on the cover of this publication. Photo by Ryan Smyth Photography.

CONTENTS SPRING 2012

Imagine… were you one of the millions of Australian’s glued to the TV in the early hours of the morning watching the London 2012 Olympics? I certainly was and loved every minute of the electric atmosphere, amazing sporting performances and spectacle of it all.

During the closing ceremony John Lennon’s famous image and song “Imagine” beamed around the world.

This globally-beloved song calls us to stop and to picture a world where people are “…living life in peace” without war, hunger or greed. What an amazing place that would be if we could get there!

At MS Queensland we have recently refreshed our vision, purpose and mission statements to help guide our organisation in the coming years. Our vision is a world free from MS and its devastating impact. We exist to help people living with MS to get the best out of life; to advocate for change and to search for a cure. Our mission is to be the first-choice for MS information, education, treatment, care and support across Queensland.

COVER STORY ina and Jack

Reg

Regina finds her hero in son Jack

PAGE 2–3

Letter from the Editor Letter to the Editor From the CEO

PAGE 4–5

Celebrating 25 years!

Facebook. Twitter. What’s it all about

PAGE 6–7

New Carbon Tax concessions Jan’s personal donation to MS Trans-pacific funding for MS stem cell research partnership

PAGE 8–9

She has MS, MS doesn’t have her!

Thank you to Perpetual Trustees

PAGE 10–11 Heartmoves for MS 2012 MS Queensland Annual Conference and AGM’

So with our new vision in my mind and John Lennon’s tune still ringing in my ears, I now find myself quietly humming the words “Imagine there’s no MS, it’s easy if you try…”

PAGE 12–13 Regina on living life to the full

Sadly, the truth is that living with MS can at times be anything but easy. I do hope however, that you take great encouragement from the fact that every single MS Queensland staff member, volunteer, supporter and friend is doing everything they can to see our vision become reality for you, and for our world.

PAGE 16–17 Wendy’s contribution to the world of MS MRI available in Fraser Coast ABS releases new MS data

At MS Queensland more than 200 of us come to work each day deeply committed and united in hope and purpose to see a world free from MS and its devastating impact.

PAGE 20–21 Quilting for MS MS questions with Tim Advocacy with Natalie

“You may say I’m a dreamer, but I’m not the only one...”

PAGE 22-23 MS Resources ‘Working with MS’ workshops on offer People with MS support group update New parents with MS group – Toowoomba

I hope you enjoy this edition of MS Life.

Lincoln, CEO

PAGE 14–15 Events that help people living with MS

PAGE 18–19 How Glenn lives positively with MS Aquatic exercise for MS makes a difference

To provide feedback, make a donation to the MS Society or for more information please call 1800 287 367, email mslife@msqld.org.au or visit www.msqld.org

MS LIFE – SPRING 2012

FROMthe CEO

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J O 3O I N U S ON

Help us celebrate 25 years of physiotherapy in our Dutton Park Clinic.

Wednesday 3 October, 9.00am to 12noon. MS Queensland Physiotherapy Department, Denbigh Street, Dutton Park.

RSVP to Linda on 07 3840 0824 as soon as possible.

25

CT Ob

CELEbRATING yEARS!

ER !

Coordinator’s office (where our InfoLine is managed) now occupies this space. At the end of June 1987, MS Queensland delivered another expansion project, opening a new wing for Granston Lodge and extending the Day Therapy Centre under Granston Lodge to house a brand new state-of-the-art physiotherapy centre: the ‘Dutton Park Clinic’. The clinic has now been in this location for 25 years and continues to evolve.

JOIN US ON 3 OCTObER FOR OUR 25TH bIRTHDAY OF MS PHYSIOTHERAPY AT DUTTON PARk. Did you know our Physiotherapy Department located at Dutton Park has been practicing from that location for 25 years this October? In fact, MS Queensland has been delivering specialised physiotherapy services to people living with MS in Queensland for nearly 38 years from different locations.

Our physiotherapy journey

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Long-term users of our Dutton Park Clinic physiotherapy services will recall physiotherapy starting out in the present ‘dining room’ of Granston Lodge where at lunchtime, every day, all of the equipment was packed away so the residents could have lunch! From here, when the Granston Lodge ‘sunroom’ was built, physiotherapy was relocated and enjoyed fantastic views of the city and the antics of the Boggo Road prison.

On 19 March 1975, the Southside Handicapped Person’s Community Day Centre was opened by Gina Lollobrigida and the hydrotherapy pool and additional space for physiotherapy in the lower level of Granston Lodge were created. MS Queensland’s current Information Resource

MS Queensland Services has had half a dozen Heads of Physiotherapy over the past 38 years, with Daryl Rosen being the longest-serving and the man responsible for the development of the Physiotherapy Department in its current location. The Physiotherapy Clinic you see today is led by Natalie O’Donohue, who has been in this role since 2006.

Over the past quarter decade, many memorable personal and professional milestones such as weddings, births, deaths, holidays, graduations and other occasions have been celebrated and shared by staff and clients. Many interesting and colourful characters, both staff and clients, have passed through the Department’s doors. There are far too many stories to tell you in MS Life, but we are hoping to revisit them all at the 25th Anniversary Celebrations on Wednesday 3 October 2012.

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it Leyla w

client

Physiothrea py offers to people w many benefits ith MS

Facebook TwiTTer TwiTT TTer What it’s all about

HAVE YOU POSTED OR TWEETED LATELY?

Due to a shift towards people using social media on mobile devices, and an increasing reliance on social media to communicate and achieve everyday tasks, a 2012 study has reviewed the most popular social media tools and whether or not they are accessible to people with disabilities. A survey of 49 people across a range of ages, disabilities and social media expertise found that people with disabilities thought social media was highly beneficial.

To read more about this report visit www.mediaaccess.org.au/online-media/social-media What is social media?

Social media is the online equivalent of engaging others in an open and active conversation. Many people have criticised social media in saying that people should ‘go outside’ and ‘have a real conversation,’ but the use of social media definitely has its benefits, particularly for people living with MS. From the early days of diagnosis throughout all stages of the disease process, many people in Queensland and around the world are finding social media outlets can be a great benefit. To be able to communicate with others in similar circumstances and find mutual encouragement and support is empowering.

Sometimes, communicating with others outside of family and friends can provide an added outlet for questions to be asked and answered and feelings to be expressed. You can talk to people in your local area, or throughout the country, or the whole world.

Not only does social media provide an avenue for participation for people living with a disability such as MS,

but it might also be a great choice for those who have limited mobility. Social media can remove barriers and ensure that participation is possible online when it would have been challenging in person.

The trick is finding the right people to communicate with – those who will connect with you in a meaningful and positive way. For example, on Facebook, there are many sites you can explore. There are specialty sites – for example, for Carers of people with MS, for Children whose parents have MS, and for people with MS. MS Queensland administers a Facebook page where people with MS can comfortably communicate with each other and exchange information. Topics such as employment and MS, travelling tips, managing heat fatigue, and parenthood have all been explored in the past.

How does MS Queensland use social media?

At MS Queensland we make use of Facebook, Twitter and YouTube to share news, research and information with you on a regular, real-time basis. Here you can find information, photos, videos, stories, events and news. It’s also a great way to get in contact with us if you’d prefer not to use the phone.

For more information visit our social media sites: Facebook: www.facebook.com/msqld Twitter:

www.twitter.com/#!/msqld

YouTube: www.youtube.com/user/MSAustraliaQ Website: www.msqld.org

MS LIFE – SPRING 2012

We all know that social media is becoming increasingly popular in today’s society, but there is still a great deal of uncertainty and reluctance to use social media from people living with a disability. Many people ask us questions like ‘what is Facebook?’ and ‘what is a tweet?’ so we’ve done some research so that you can make an informed decision as to whether or not social media is for you.

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NEW

Clean Energy Household Assistance Packages – what you need to know With the introduction of the Carbon Tax, as part of the Australian Government’s Household Assistance Package for a Clean Energy Future, an annual $140 payment will be provided to disabled individuals or their carers to assist with energy running costs of essential medical equipment.

The Essential Medical Equipment payment is available to disabled people or their carers who: • Hold an Australian Government concession card • Use certain essential medical equipment or have certain medical conditions that require the use of additional heating and/or cooling in their home and are responsible, either wholly or partly, for meeting the energy costs associated with running the equipment.

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The Essential Medical Equipment Payment can be claimed through Centrelink via the Centrelink online services. If you are not registered for online services you will need to create an online account with www.australia.gov.au and register for Centrelink online services before you can begin the online claim.

Notes for applicants • MS is identified within the neurodegenerative disorder classification, which is listed in the approved medical conditions in the Information booklet.

Household Assistance Package • Applicants are required to obtain Essential Medical Equipment medical confirmation as part Payment, air conditioners are of the claim form (evidence of NOT identified. However, the qualification for assistance from Medical Confirmation form a state or territory government authorises that MS results in scheme will NOT be accepted). the inability to regulate body • At Question 36 it states: to be temperature and the applicant eligible for payment for medically medically requires heating/cooling required heating/cooling, the in their home because of this person with medical needs must condition. be suffering from one of the qualifying medical conditions For further information on this which result in the inability to application process and to download regulate body temperature. the forms please visit our website For the list of approved medical www.msqld.org and search conditions refer to the Information ‘clean energy assist’.

Booklet (MS is identified within neurodegenerative disorders) tick yes and supply the confirmed Medical confirmation form.

• At Question 37 on the Claim for Clean Energy Future Canadian Jan Beardsall donates $25,000 to MS Queensland

Jan’s personal donation to

MS

When we met recently with Jan, she said her connection with MS was that her young niece in Canada had been diagnosed with the disease a couple of years ago. Now living in Queensland, Jan has seen first-hand how people can be affected by MS and wanted to make a contribution to help the cause.

Jan made this contribution in the form of a $25,000 personal donation to MS Queensland which was received by Board Member and Gold Coast Support Group Coordinator John O’Dempsey on our behalf.

Jan is retired and travelling overseas at present but when she returns, she will be attending the Gold Coast Support Group meetings to show her support for people living with MS. Thank you Jan for your very generous donation. What a lady!

When it comes to helping the MS cause, every dollar counts.

To donate to MS Queensland’s work and to MS research in Australia visit www.msqld.org/donate

MS

TRANS-PACIFIC FUNDING FOR

STEM CELL RESEARCH pARTNERSHIp pARTNERSHIp pARTNERSHI Australian Federal Minister for Health Tanya Plibersek announced that $1.75 million of Australian government funds will be directed to Professor Claude Bernard and his team of researchers at Monash University and the CSIRO in Melbourne. This funding is in conjunction with a $4.7 million grant from the Californian Institute of Regenerative Medicine to their collaborators at the University of California, Irvine.

Currently available therapies can help to control the unpredictable relapses of MS. However, for those with progressive forms of the disease there are no treatments that can halt or reverse nerve damage.

This significant grant will allow Professor Bernard and his Australian team to work together with researchers at the University of California. The trans-pacific team will pool their respective expertise in experimental models of MS and human stem cell technology to develop a stem cell treatment, which they hope will help promote the repair and regeneration of damaged neurons.

They will be using re-programmed human skin cells to make induced pluripotent stem (iPS) cells. These iPS cells behave like embryonic stem cells and can grow into many different cell types, including brain support cells such as myelin-producing cells.

The team will conduct pre-clinical testing of the cells in laboratory models of MS to confirm their potential to repair the brain. They will also develop and test the technology needed to reliably produce the human stem cells to the standards required for future clinical trials in people with MS. This announcement has been welcomed by MS Research Australia Chief Executive, Jeremy Wright.

“This level of international collaboration, in funding and research, is the way we’ll solve MS. It also recognises the quality of Australian MS research within the global effort. On behalf of all our supporters, many of whom have MS – we’d like to thank the Government for recognising the potential of Monash University’s research to deliver real results,” said Mr Wright.

Visit www.msra.org.au for more details.

MS LIFE – SPRING 2012

Australian and Californian scientists searching for a better way to treat multiple sclerosis (MS) using a worldfirst adult stem cell technique will benefit from a major, joint Australian and Californian government grant.

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“SHE HAS MS, MS DOESN’T HAvE HER!”

David Peck fr om with our CEO Perpetual Trustees Lincoln Hoppe r

THANk YOU TO PERPETUAL TRUSTEES

MS LIFE – SPRING 2012

MS Queensland would like to thank the following trusts, managed through Perpetual Trustees, who, through their 2012 Philanthropic Funding round, have awarded us an incredibly generous combined grant of $196,100 to fund a new client services system.

• Gladys Myrtle Brown Charitable Trust • Pascoe J C • John & Marie Bergin Charitable Trust • J & T Daley Charitable Trust

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Recent advances in system technology and mobile devices have exciting implications in the delivery of our services

to people with MS, and we now have the resources to explore a new system that will not only create more organisational efficiency, but will also capitalise on the latest innovations in the sector.

Perpetual Trustees are true visionaries in the field of philanthropy, as they realise the importance of investing in crucial service enhancing infrastructure for community organisations like us. Thank you to these generous trusts who have made this substantial donation possible.

THE bELOW WAS WRITTEN bY 12-YEAR-OLD JACk bROOk, SON OF MUM REGINA LIVING WITH MS “Regina Brook is a wonderful woman.

Positive, bubbly and beautiful, and living with multiple sclerosis (MS).

Regina’s courageous journey all started in June 2010 when she was diagnosed with the horrible illness that is MS. This woman thought she had MS for two years but now knows she was horribly wrong, as neurologists established that she displayed symptoms for over five years. She had no idea all those years ago that the symptoms she ignored were in fact lesions starting to form in her brain. She and a lot of general practitioners thought it was just stress from work and day-to-day life. They were all wrong!

When the doctors delivered the news that she had MS, Regina and her family were devastated.

Thinking this meant a cruel future in a wheelchair, they were all left feeling

a little naive after speaking with the knowledgeable people from the MS Society. These professionals showed them the reality was that this disease could be managed to a certain extent.

Once this was realised she pulled herself together, and went shopping!

Yes that’s right, shopping. Her motto is ‘When the going gets tough, the tough go shopping’!

Family, friends and the future – these are the things that have kept her positive. Along with her job which has given her something to get out of bed for in the morning, and she does, no matter how much she is hurting. This is where her beloved shoes come into it! Loving her shoes and clothes, she has used them as a mask to hide her physical pain the MS causes her every hour of the day.

This just shows what a brave and tough woman she really is.

Regina a with th nd Ian Broo eir son k Jack

Being diagnosed with MS definitely changed her outlook in life. Nothing is kept for ‘good’ because as far as she is concerned every day she wakes up and can walk and talk is a ‘good day’ for her, and her family.

Everything is used every day and nothing is taken for granted. Why? Because a high percentage of people with MS end up in a wheelchair and just because she has one, doesn’t mean that she wants to be in it.”

✓ Carbon fibre technology

✓ NOIR 3kg frame

✓ support cardiovascular functions ✓ warm legs with less or no pain ✓ ease spasms increase mobility

When she has a bad day she tells herself to ‘suck it up’ and focuses on the good days. Since being diagnosed, the good days outnumber the bad, but MS is far from predictable and things can change in an instant. She has to take countless www.abilityinmotion.com.au admin@abilityinmotion.com.au medications daily, including injections PHONE 1800 994 408 toFaxkeep 07 the 5335 1604 at bay. symptoms

A.I.M - to brIng InnovAtIon to QueenslAnders

MS LIFE – SPRING 2012

MOTOmed... passive/active exercise. Assist in your own rehab.

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HEARTMOvES ES

FOR MS

L LAUREEN GETS HER HEARTMOVES HEARTMOVES ON

ExERCISE CLASSES FOR HEART PATIENTS NOW HELPS PEOPLE WITH MS Excerpt from an article by Ewan Leighton, Stanthorpe Border Post Stanthorpe local Laureen Ireland was diagnosed with MS 26 years ago. Now 50, Laureen has faced the day-to-day battle head on while giving herself the best chance possible through exercise and muscle strength routines.

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But now a new treatment has emerged. A program initially designed to aid the transition of cardiac patients from hospital back into a normal routine, “Heartmoves” has proved popular amongst people living with MS trying to gain some form of normality back in their lives.

“With MS they say to exercise the muscles because they tend to be able to move more,” Laureen said.

“I think the more active I stay, I find

it better. Ten years ago I was doing hydro-exercises and then I stopped doing it. I wasn’t sure if it helped. But after doing nothing for a while I could see it was helping.”

Having only completed about two Heartmoves sessions so far, Laureen said she was confident the program would help her mobility – and so was instructor Rosey Harslett.

Rosey said the proof was obvious – maintaining a regular exercise routine will help people with MS. “It’s been proven that doing any form of exercise, the benefits really show,” Rosey said.

“It’s a big mental thing too, it makes you feel better. Heartmoves participants feel they have improved in their physical and mental well-being.”

Working with people with MS oneon-one, Rosey said the Heartmoves program helped patients keep the

pathway open between the brain and the muscle.

“With the co-ordinated exercises we use our strength bands and balls, it’s really fun,” she said.

“And we do it in a group, which is nice because you get to meet new people.

But it’s to suit the participant and what they want out of it,” Rosey said.

MS specific Heartmoves classes run at the YMCA in Stanthorpe from 11am on Tuesdays. For more information visit www.stanthorpe.ymca.org.au or call 07 4681 3020.

Further details about other Heartmoves with MS classes in Queensland will be advertised on our website www.msqld.org as we hear about them.

AGM CE NOTI

Inaugural MS Queensland Annual Conference and AGM

FREE EVENT FRIDAY 9 NOVEMBER 2012 12noon – 4pm

Join us at the Southbank Institute of Technology, South Bank for the first annual MS Queensland Conference and AGM featuring an MS research presentation by the head of MS Research Australia Jeremy Wright and other guest presentations.

The Annual General Meeting (AGM) forms part of this program. Program includes lunch and refreshments as well as a number of awards and presentations.

Southbank Institute of Technology is a fully accessible venue with professional catering provided. Parking and drop off access via Ernest Street. Public transport close by.

RSVP is essential to secure your attendance.

RSVP by Friday 19 October to daz.davies@msqld.org.au or 07 3840 0804.

MARK YOUR DIARY

2012 Annual General Meeting (AGM) and presentation of the 2011–12 Annual Report

Southbank Institute of Technology, Ernest Street, Southbank

HEARTMOVES ‘FOR MS’ COMES TO QUEENSLAND

MS Queensland, in partnership with the Heart Foundation, is delighted to announce the launch of Heartmoves for MS training in Brisbane. MS Queensland is in the process of training two of our physiotherapists to become the “Heartmoves for MS” trainers for Queensland. This means that licenced Heartmoves Leaders requiring reaccreditation will, from October 2012, be able to receive this training closer to home in Brisbane instead of Sydney.

Since 2010, MS Australia NSW/VIC/ ACT has been working with the Heart Foundation to deliver training workshops in Heartmoves for MS. The Heart Foundation now has successfully trained 75 Heartmoves Leaders Australia wide in delivering Heartmoves to people living with MS. The aim of the MS Australia NSW/ VIC/ACT and Heart Foundation

partnership is to create exercise opportunities for people living with MS with the goals of increasing physical activity levels, assisting with stress management and relaxation and promoting social connectedness.

How ‘Heartmoves for MS’ can benefit you As you know physical activity plays an important role in helping minimise the symptoms of MS. The Heart Foundation’s Heartmoves program recognises this and focuses on delivering safe, low-to-moderate intensity exercise that involves gentle aerobic activity, weight bearing and resistance exercises, and stretching – all of which help to build your strength and fitness and improve your balance.

Heartmoves is a low-to-moderate intensity exercise program and is open to everyone. The program has been designed to be safe for people with stable long-term health conditions such as cardiac, diabetic conditions or

MS. You can start at your own level and exercise at your own pace. All Heartmoves leaders must complete a specific nationally accredited Training Course, so you know you are in good hands. They are all insured, licensed and have current CPR qualifications.

Heartmoves leaders tailor exercise to your individual needs and deliver programs within Heartmoves safety guidelines.

What can I expect at ‘Heartmoves for MS’?

Part of the aim of Heartmoves for MS is that you have fun and enjoy exercise. There are always chairs available and you are welcome to use them during the sessions. Heartmoves leaders will explain each exercise to you and exercises can be adapted to cater for your special needs.

For more information on the new Heartmoves and MS program please contact our InfoLine on 1800 177 591.

MS LIFE – SPRING 2012

What it is and how Heartmoves for MS can benefit you

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REGINA

ON LIVING

LIFE

TO THE

FULL

For Regina Brook, an MS diagnosis at the age of 42 made her worry about her future. She was living a busy life as a mum, wife, education worker and avid baker at home when she received the news. Fortunately though, her very special, now 12-year-old, son Jack has made everything seem more positive. Regina recently spoke to MS Queensland about her diagnosis, and how her family helps her live every day to the full.

After experiencing MS related symptoms intermittently for almost two years, a three week bout of headaches, the loss of feeling down her right side, and an inability to speak led Regina to a neurologist. The neurologist sent Regina for an MRI, and a couple of days later it was confirmed; Regina had multiple sclerosis.

At first, Regina and her family were devastated to find out about the diagnosis.

“I had continued to work through my decline in health and I didn’t want to believe it. As a mum you just try and work through it all,” says Regina.

“First of all, the GP thought my symptoms were just from stress, but as my body changed and my health deteriorated further, we knew it was something more than ‘just stress’.”

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Regina immediately thought MS would lead to a “cruel future in a wheelchair,” but with her loving family and the support from MS Queensland, Regina managed to stay grounded.

“When I was diagnosed we didn’t understand much about MS; I thought of the worst possible scenario as you do.

But from spending time on the MS Queensland website and speaking to the staff at the MS Society they soon put my mind at ease,” says Regina.

“I have learnt that MS affects everybody differently and progression of the disease depends on the individual. The

on ping her s Regina hel is homework h Jack with

Baking t been a ogether has al family favour ways ite

HOW REGINA SHINES FROM THE LOVE AND SUPPORT OF HER 12-YEAR-OLD SON JACk MS Society’s resources and especially their website were brilliant at rationalising how MS may affect me.”

“Regina Brook is a wonderful woman. Positive, bubbly and beautiful, and living with multiple sclerosis.”

Regina says it is the loving support from her husband Ian and son Jack that enable her to push on and support her through reducing her work to four days a week in order to manage her symptoms better.

“When she has a bad day she tells herself to ‘suck it up’ and focuses on the good days. Since being diagnosed, the good days outnumber the bad, but MS is far from predictable and things can change in an instant. She has to take countless medications daily, including injections to keep the symptoms at bay.”

“MS has changed our whole perspective on life.

As a family we live every day to the full and take advantage of every experience we can. Every day is a good day for us.”

The special bond between Regina and her son Jack is clear as soon as you meet them. Whether they’re baking cakes in the kitchen or simply reading together, the close relationship they share is unmistakable.

“Being a 12-year-old boy, his interests should be elsewhere, but Jack has adapted to our new ‘lifestyle’ with MS and has been a true inspiration for me. He has kept a smile on my face even through many, many tears!” says Regina.

Having heard about the MS Heroes’ Awards in MS Life earlier this year, Regina nominated Jack for this year’s awards to thank him for the help and support he so selflessly gives to her.

As a result, Jack was the proud recipient of a special Highly Commended MS Inspiration Award, and was given the award by the Governor of Queensland Ms Penelope Wensley AC at Government House for World MS Day this year.

Jack’s adoration and love for his mother shows just how special he is. While Regina was nominating Jack as an MS Hero, Jack chose the topic of ‘She has MS, MS doesn’t have her!’ for an English assignment at school (shown in full on pages 8 and 9) saying:

Regina felt overwhelmed with emotion after reading the assignment.

“How proud am I? Very! Jack has grown up so much over the past two years and I cannot begin to describe what he has done for the whole family,” says Regina.

MS by its very nature affects the whole family in different ways, but Regina couldn’t possibly have a better support network around her.

“Jack keeps us grounded, shrugs ‘stuff’ off, and gets on with life. A lesson that we can all learn from,” says Regina.

Jack continuously acts older than his young age of 12 by helping with grown-up tasks, such as teaching his 21-yearold brother how to use the washing machine.

“Without letting me know, he’ll put my crutches in the back of the car because he knows that I am too stubborn to use them,” says Regina.

“And sure enough when I can no longer walk there he is, standing beside me holding the horrible things with that beautiful, smug look on his cheeky face.”

“Unlike his friends, I don’t have the usual six metre (OMG I’m not being seen with my mother) zone while in public.

Quite the opposite, he is right beside me holding my hand,” says Regina.

Regina now looks forward to the future, and as far as she is concerned, every day that she wakes up and can walk and talk is a ‘good day’ for her and her family. This is a large part due to her son Jack.

MS LIFE – SPRING 2012

Regina’s husband, Ian, spoke of how MS has changed their family dynamic.

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MS SWIMATHON EVENTS

MS MOONLIGHT WALk

The MS Swimathon is a fundraising event where teams of up to 15 people are sponsored by their friends, family and work colleagues to swim in a 12 or 24 hour relay to raise vital funds for Queenslanders living with MS.

Help us turn brisbane red and support MS

MS Swimathon Jindalee Saturday 17 November In its third year, MS Swimathon Jindalee is set to be bigger and better than ever.

Thanks to the continued support of the Jindalee Pool and Kiwanis Club this year’s 24-hour event will be held from 2pm Saturday 17 November to 2pm Sunday 18 November. We expect more than 100 swimmers to jump into the pool and swim relay style with their team mates over the 24-hour period to complete the event.

This year we aim to raise $50,000 through the Jindalee event to support local people living with MS. We invite local people living with multiple sclerosis to join the MS Team. Members of MS Queensland receive MS SWIMATHON TOOWOOMbA free registration Saturday 10 November to participate as a MS Team MS Swimathon Toowoomba will be on Saturday member. For 10 November 2012 as a 12-hour event. further details, contact Thanks to the wonderful support of the Milne Bay Aquatic Bianca or Centre, Rotary Club of Toowoomba, and local event volunteers Julie at MS Shelley and Chris Padgett, all funds raised will contribute to support Queensland local people living with MS. We are looking for people to join the on MS Team, so if you would like to be a part of this year’s event, 07 3840 0812. contact Bianca or Julie on email bianca.williams@msqld.org.au or phone 07 3840 0812 at the MS Queensland office.

NEW

Now in its 14th year, the Moonlight Walk is a leisurely 10km walk or 5km ‘mini’ charity walk starting at sunset and continuing into a brightly-lit full moon night.

The MS Moonlight Walk costs from just $20 for adults and encourages people to get active. The walk is a favourite among families, corporate teams, students and community groups – not to mention a few costumed characters.

Walkers witness the best of Brisbane’s river, including the illuminated Kangaroo Point Cliffs, Story Bridge and lush Botanic Gardens before crossing the Goodwill Bridge to reach the finish line.

After the walk, stay and enjoy the celebrations at South Bank. There will be live entertainment, prize draws, special guests and plenty of food and drinks on sale. It’s the perfect backdrop to enjoy time with family and friends.

Spread the word and get your family, friends and colleagues on board to join thousands of proud Brisbanites as we step out to raise funds to support Queenslanders living with MS. Registration starts from just $20 – register now at www.MoonLightWalk.com.au

MS LIFE – SPRING 2012

To date, successful events have been held in Jindalee, Redcliffe, Gold Coast, Cairns and Townsville and the dollars contributing to MS Queensland

Join thousands of walkers on Friday 19 October for Brisbane’s annual MS Moonlight Walk around the Brisbane River and help raise over $300,000 for people living with multiple sclerosis.

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WENDy’S contribution to the world of MS

HOW WENDY MANAGES HER bUSY LIFESTYLE AS AN ADVOCATE, AMbASSADOR AND PERSON WITH MS Our sincere congratulations goes to person living with MS, Wendy Lovelace, the MS Heroes MS Champion Award 2012 recipient, who was presented with this significant award at Government House at the World MS Day Reception earlier this year.

Chairman of MS Queensland, Jonathan Loraine, spoke warm words of thanks and congratulations on behalf of MS Queensland when he shared with the audience why Wendy is a MS Hero: “Recognised for your work in championing advocacy and accessibility issues in the MS sphere. Being an architect by trade, you influence the building industry and the wider community. Empowering others and championing the MS cause, combining professional knowledge with lived experience you have become a powerful advocate for the MS Society.”

MS LIFE – SPRING 2012

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Wendy is another fantastic example of the outstanding work that people with MS do to help others within the community and was nominated by Spinal Injuries Association, where Wendy works as a Design Compliance Officer. Like many, Wendy holds numerous roles in her busy life: Architect; Step-by-step architecture for access and advocacy; Convenor of the Queensland Action for Universal Housing Design (QUAHD); MS Queensland Board Member; MS Ambassador; Design Compliance advisor Access Solutions for the Spinal Injuries Association; Accessibility Reference Group for Queensland Rail and professional speaker at forums.

Wendy first got involved in championing accessibility issues when she saw she could apply her expertise and passion as an Architect to consult on the modification of MS Queensland’s townhouses in Annerley for people with high care needs within an inclusive community. This was a landmark project for MS Queensland which Wendy is very proud to have been an integral part of.

Not a day goes by without Wendy acknowledging other areas of life which aren’t perhaps as inclusive as they could be. As a result she is making daily impact in the community by writing to Councils and members of Parliament, consulting with the building industry, numerous organisations, and government buildings to help them address accessibility issues that will make a huge difference to the community as a whole.

Wendy admits she is always wearing her ‘accessibility and advocacy goggles’. There are many instances of people being ‘shut out of life’ because different levels of assistance may not be available to them. Wendy addressed this issue in her local suburb when a continuous footpath was not provided to a path that is frequently used by all members of the community; including people with prams, people walking their dog, the elderly and people with various mobility issues. Wendy wrote to her local Council about this lack of access and due to her proactive, yet fairly simple action of communicating with her Local Council Member there is now a footpath Wendy allowing access for all. ’s se

lf otpath -advocacy a ch in her l ocal s ieved uburb

this fo

Wendy is true inspiration for all that she does on behalf of people living with MS. As per Wendy’s advice, “anyone can make a difference; you just have to do it”. We all have a story to share like Wendy’s... and perhaps one to action through self-advocacy.

MRI

AVAILAb AVAILA AVAILAbLE bLE IN FRASER FRASER COAST COAST

AUSTRALIAN bUREAU OF STATS RELEASES NEW MS DATA

New estimates from the Australian Bureau of Statistics (ABS) suggest there are now 23,700 Australians living with MS. The estimate comes from analysis of the 2009 ABS Survey of Disability Ageing and Carers (SDAC). Nearly 74,000 people from all states of Australia completed the survey, including 1,300 people living in non-private dwellings and cared-accommodation establishments.

Fraser Coast Radiology has been granted an MRI (Magnetic Resonance Imaging) licence after more than two years of lobbying the Federal Government. The breakthrough means many local MRI patients will soon be eligible for Medicare rebates, whether they are referred by a specialist or a GP. Dr Robert Taylor from Fraser Coast Radiology said when the licence comes into effect from 1 November; patients referred by a specialist will be eligible for a rebate, while from 1 January 2013, patients under the age of 16 referred from a GP for specific MRI scans will also be eligible.

Dr Taylor said “This is great news for the Fraser Coast as we have been working for a long time to get this licence.”

MRI uses magnetic fields to generate images that help diagnose illness, without using ionizing radiation. It is especially effective on soft tissue, making it very important when working with patients suffering from cancers or strokes or soft tissue injuries.

As part of a $104.4 million reform package, Fraser Coast Radiology received one of 30 new licences granted by the Department of Health and Ageing, taking the total number of Medicare eligible MRI services across regional Australia to 64.

Fraser Coast Regional Council Mayor Gerard O’Connell said the licence would help with the cost of medical treatment for a large number of Fraser Coast residents.

“This is absolutely fantastic news for the entire region,” Cr O’Connell said. “I know Dr Taylor and his team have been working hard for the better part of two years to be granted a licence and it really will make a lot of difference for a lot of people.”

Despite being at the conservative end of the scale, this figure was used to determine that the cost of MS to individuals and the Australian community totals over $1 billion. The cost of MS in Australia is therefore likely to be much higher than this and highlights the need not only to support Australians with MS through services and medication, but also to assist people with MS in remaining in meaningful employment.

The ABS highlight the impact of MS on employment, with their data showing that over 62% of people with MS have some form of employment restriction. The MSRA Economic Impact Report revealed that lost productivity for people with MS and their carers accounted for nearly 50% of the total cost of MS to individuals and society.

The prescription and MS Society data used by MSRA for the Economic Impact Report was also able to provide a reliable estimation of the proportion of people with MS in each state of Australia. The data clearly show that a ‘latitude gradient’ exists, with people in more southern states at much higher risk of developing MS than those in the northern regions. This provides important information on the biology of MS and supports the hypothesis that exposure to UV and related vitamin D production in the skin play an important role in the disease.

To view the ABS data report visit www.abs.gov.au and type ‘multiple sclerosis’ into the search field. For advice on safe sun exposure to maintain vitamin D levels, visit www.sunsmart.com.au/vitamin_d

MS LIFE – SPRING 2012

Source: Fraser Coast Regional Council online www.frasercoastopportunities.com.au

Due to the sampling variability of this method of estimating the prevalence of MS, the most likely range for the true prevalence of MS is between 21,150 and 26,250. This compares well with the prevalence estimate of 21,283 based on prescription data for MS medications and MS Society client registrations that MS Research Australia (MSRA) quoted in their Report on the Economic Impact of MS in 2010 released in September 2011.

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HOW GLENN LENN LIvES pOSITIvELy WITH MS “My story is like many other people with MS so maybe I should start with a time (like most of us) where I married my girlfriend from school, I became a carpenter and joiner while my wife worked at a toy and hobby warehouse in Sydney.

We had our first child one year after we were married, living in a small one roomed hut that belonged to my mother-in-law on a property next to her, I became a maintenance officer for a kitchen company in Liverpool, two years after we were married I developed numb legs that concerned my boss enough to ‘put me off’. I went to numerous doctors and after spending a week in a neurological hospital the doctors still didn’t know what was going on (Sydney didn’t have MRI machines back then). Six weeks later the numbness went away and I felt fine, I later found out some nine years later that it was MS and had gone into remission.

MS LIFE – SPRING 2012

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My wife and I had three more children, purchased a house in western Sydney, bought a kitchen company in Penrith, and were very happy with the way our life was progressing. After five and a half years we decided to move out to the country where we both had come from to give our children a better scope on life, and to get away from the rat race. So we sold our house, closed the business (because at the time no-one was buying), found other jobs for my tradesman, apprentices and secretary so that I wasn’t leaving them in the lurch, packed up our 4-wheel-

drive, camper, and canoe and headed to western NSW looking for that perfect property.

We looked at many country properties, land we liked but houses we didn’t or vice versa, so we continued north sightseeing as we went (Lightning Ridge, Goondiwindi, Emerald etc.) till eventually we found our way back down near Toowoomba at a little place called Allora, where we came across 90 acres that we adored.

So with a little planning and designing (not to mention enrolling the children in school) we built the house that we always dreamed of, unfortunately 3/4 of the way through building the MS came back, numbness again and double vision, this time with the help of an MRI machine the neurologist was able to diagnose me, as like all MS sufferers total shock and disbelief (but in some ways relief of a final diagnosis).

Glenn and his famil y enjoying life to the full

Since then I have had many jobs but at the time employers didn’t want to employ someone with a disability.

Fortunately all that has changed and I have been able to secure a job as a teacher aid at Killarney State School in the manual arts room helping teach

woodwork two days a week (which is about all my MS will let me as it is slowly progressing). I enjoy my job and the staff and school have been so supportive.

My ‘MS story’ is contained in 26 years of marriage and I have been fortunate to have the most supportive family and a loving wife who sees me as her life-long partner, MS or not.

I now have four grandchildren and another wedding coming up this year, so I consider my life to be full and adventured, despite the MS. Apart from the school, I have also been a member of the Warwick Men’s Shed for the past eight months, and we are trying to cater for whoever would like us to make or fix things for them. After acquiring a fantastic shed from Council, we have made some round tables for a local tutorial school in Warwick, fixed some kindy chairs for another school and at the moment endeavouring to make toys for disadvantaged kids in the Warwick area.

Most of the men in the shed are retired and want to do something with all their spare time, so I get them out there using tools that they may have never experienced before. They seem to really enjoy themselves and we have had the paper come and photograph our work in progress.

When I read Mayor Pisasale’s story, I was so inspired and felt that he is such an asset to MS Queensland and its members. For the last 10 years I have also been involved with the Society in a voluntary position for other newly diagnosed MS sufferers.”

Glenn Miller, living with MS

exercise for MS makes a difference

enjoying nd Elaine Karalee a tic Exercise Aqua

We recently spoke with Elaine Leggatt, who has been living with primary progressive MS since 2003 and saw great benefit in jumping in the pool to use our Aquatics exercise service.

Elaine’s first words to us were “I’m not a water person at all. I don’t do cold water.” So how did she go from that to jumping in the pool each week at our Dutton Park Clinic for an hour of Aquatics exercise? Elaine puts it down to the support of the Physiotherapy staff who encouraged her to try something new to increase her strength and flexibility out of the water.

Aquatics exercise classes are offered at the Dutton Park Clinic and are

done in a group environment. The classes concentrate on moving your legs, gaining strength with your arms, increasing balance and most importantly, keeping you moving during the class.

Over the past 18 months Elaine has been taking part in the classes which have not only improved her stamina, but have had a positive impact on her strength and flexibility, both in and out of the pool. She manages one, one hour class a week and also attends a Physiotherapy program at the Dutton Park Clinic each week to maintain her well-being.

When speaking about MS Queensland, Elaine is all praise. “The staff are very helpful, caring and understanding to my needs – now they’ve got me in the pool I can’t get enough of it! Starting Aquatics through MS Queensland has been a fabulous experience. Give it a try; you’ll be amazed by the results.”

Karalee Somerville who was diagnosed with MS in 1989 also regularly attends the Aquatic classes. Karalee first had contact with MS Queensland three years ago as her MS symptoms had been progressively getting worse. Now she participates in both an Exercise Therapy program and Aquatics program once a week.

Aquatics exercise was a new experience for Karalee too; “I love it, it’s brilliant. I find it a lot easier to do things in the water. I

can even walk up and down the middle of the pool where I have no balance problems.”

Karalee says she feels more flexible straight after the classes and the following day. “It is a lot of fun socially and physically.

For anyone considering it, I say give it a go early in your MS symptom progression because I think the earlier you start, the more benefits you’ll gain.”

Referral to the service is determined by the Physiotherapists following assessment. For more information on our Aquatics service at the Dutton Park Clinic please contact our InfoLine on 1800 177 591.

In regional Queensland?

MS Queensland is committed to helping those with MS gain access to services in their local area, no matter their geographic location. We have spent time in regional communities across Queensland to identify physiotherapy and exercise therapy services that people living with MS can access.

The services available by these independent providers are not linked to MS Queensland and all information from the service should be accessed through the service provider. We currently have services listed for the Toowoomba, Ipswich, Gatton, Esk, Laidley, Dalby, Oakey, Warwick, Stanthorpe, Kingaroy, Nanango and South Burnett regions.

MS LIFE – SPRING 2012

Did you know that MS Queensland offers Aquatics as a service to help improve overall flexibility, upper and lower limb strength, cardiovascular fitness, and balance? Research into the use of Aquatic exercise in people with MS has shown varying levels of health benefits including improved muscle strength, fitness, gait and mobility, reduced fatigue and an increased quality of life or sense of well-being.”

By exercising in the water, our clients feel a greater sense of confidence, freedom of movement, and a sense of accomplishment in managing tasks they could not do out of the pool (however many can transition these skills ‘on land’ in their daily activities). Aquatics is also fun while exercising, which is very important to maintaining well-being!

K ‘I love aralee says it, it’s brillia nt.’

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Quilting FOR MS

MS QUESTIONS WITH TIM

bODY TEMPERATURE: THE INVISIbLE MS SYMPTOM

MS LIFE – SPRING 2012

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This is probably one of the most common questions we hear – regardless of how long a person has had MS. Many people with MS experience a temporary worsening of their symptoms when the weather is very hot or humid, or they run a fever with an infection, sunbathe, get overheated from exercise, or take very hot showers or baths.

For example, some people notice that their vision becomes blurred when they get overheated – a phenomenon known as Uhthoff’s sign. These temporary changes can result from even a very slight rise in core body temperature (as little as half of a degree), because an elevated temperature further impairs the ability of a demyelinated nerve to send messages. In fact, back in the ‘old days,’ one of the tests people underwent to see if they had MS was literally ‘The Hot Bath Test’ – if your symptoms were worse after the bath – you were more likely to have MS than some other neurological disorder.

Quiltin g becomin for MS is g popu lar

The residents and respite visitors with MS at our Granston Lodge facility are enjoying warmth since the Star Sea Quilters from Cleveland made the Lodge a number of quilts for the winter. Star Sea Quilters is an organisation of 80 women who, each year, choose a different organisation to make quilts for, benefiting those in need.

All in all, the ladies made 24 quilts over nine months together with the Queensland Quilters. Group member, quilter and project coordinator Karen Unsworth said being able to help Granston Lodge was “so special.” “It’s just so rewarding being able to see who the quilts will be going to and how much it will help them.”

Making quilts for people living with MS is becoming quite popular. Our Regional Services Coordinator Tasman Saywell recently visited the Buderim Machine Embroidery Group on the Sunshine Coast to receive five quilts for MS Queensland. The group spent almost a year making the quilts and were happy to see them donated to such a worthy cause.

Heat cannot We appreciate the effort both these groups have gone to in cause support of people living with MS in Queensland. an attack or relapse, or make it progress – but it can cause a temporary worsening of symptoms. You cannot damage the nerves by exercising or getting the flu.

I am worse when it is cold – is that normal?

Well there is unfortunately no such thing as normal – but there are some people who experience their symptoms more when it is cold.

This is not the same process as above – usually people say they feel stiffer, the joints muscles feel tight and can be painful. Stretching when done regularly and activity/exercise, regardless of physical symptoms or mobility, can help with this and a physiotherapist can suggest some stretches for you.

Does hot weather or over heating make my MS worse?

Tim, Manager Specialist Education

It can make the symptoms worse but does NOT make the disease worse.

Have a question to ask Tim? Email us at mslife@msqld.org.au

atch your ted and w Keep hydraerature this Summer body temp

For more information you can visit the following websites: • MS Queensland, Top 10 tips to beat the heat: www.msqld.org • National MS Society, America: www.nationalmssociety.org and search ‘heat’ in the top right hand corner.

WITH NATALIE

HELP QUEENSLAND JOIN THE LIST OF NDIS LAUNCH SITES – IT’S NOT TOO LATE!

Together with writing a letter to your MP there are several ways to add your voice:

In recent months many from the MS community have joined together for DisabiliTEAs and travelled from near and far to unite at the NDIS Rally in April this year. Together we have assembled such great support for the National Disability Insurance Scheme (NDIS) and we should all be congratulated.

Have you signed up to the Every Australian Counts website? Be counted! Visit www.everyaustraliancounts. com.au

Although Queensland was not included for a launch site for the NDIS this does not mean we stop speaking to our politicians and sharing with them why this once in a generation chance for change to the disability sector must happen.

Access the template on the MS Queensland website to write a personal letter to your MP explaining why we need the NDIS.

At the Council of Australian Governments (COAG) meeting held on 25 July 2012, the Every Australian Counts campaign took over 7,000 messages from Australians telling COAG to lock in the NDIS. The good outcome was that the Commonwealth made agreements with Tasmania, South Australia and the ACT for NDIS launch sites starting on 1 July 2013. A couple of days later, agreements were also reached with Victoria and New South Wales.

Send a direct message via email to your MP by visiting www.getup.org.au/QLDNDIS

Join us at our DisabiliTea on Friday 26 October.

For more information contact MS Queensland.

Heading into summer With Queensland experiencing the longest cold-snap in 17 years, many of us may have been looking forward to the arrival of Spring. As we know the return of the heat can also bring needed use of air-conditioning. It is a great time to remind you of the concessions that may assist with

increasing electricity costs, particularly the newly introduced Australian Government’s Household Assistance Package for a Clean Energy Future.

Under this scheme, a payment of $140 will be paid annually to assist with energy running costs for essential medical equipment (refer to the full article on page 6 for more information).

Self-advocacy At MS Queensland we encourage ‘self-advocacy’ and have some great examples to share with you. In this edition of MS Life, our recent recipient of the MS Hero Award – Wendy Lovelace – an inspiring self-advocate who also exemplifies ‘Living Positively with MS,’ a theme introduced by Mayor Paul Pisasale and supported by you from the wonderful stories we have received. We enjoy sharing these with you, please take the time to read Glenn Miller’s story on page 18. We welcome and encourage everyone to share their ‘Living Positively with MS’ story and I look forward to receiving yours.

Please do not hesitate to contact me with any queries you may have at natalie.walsh@msqld.org.au or phone 07 3840 0823.

Many thanks

Natalie, Advocacy Manager

MS LIFE – SPRING 2012

m at the sland tea MS Queen y earlier this year ll NDIS Ra

However we must continue to show our support and raise more awareness to secure the NDIS in Queensland.

Your story is vital. You can have a lot of impact through the simple act of writing a letter to your local State Government member to share your individual story of what the NDIS means to you.

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MS RESOURCES WWW.MSQLD.ORG

We have launched an Online Resource Centre on our website www.msqld.org to help you access the latest information about MS from around the world. There are two sections – ‘General information on MS’ and ‘For health professionals’ that offer resources on working with MS, fatigue, sexuality, complementary therapies and motherhood just to name a few.

Please find below a review of two of the most downloaded resources from our website. If there is information you need not available through the Online Resource Centre please email us at info@msqld.org.au or phone our InfoLine on 1800 177 591.

Sex and MS – a guide for men

Publication by MS Trust – 2011

“Many men find it awkward or embarrassing to talk about sex. Some men think their sexual symptoms must be inevitable consequence of MS that has to be endured. Others might think that their difficulties are unrelated to MS and may feel guilty or shameful about what they are going through.

Sexuality is an important part of life and factors that affect this, whether physical or emotional, should be taken seriously.”

This booklet from the MS Trust gives a frank overview of the sexual response – how it should work and how men may manage sexual issues within the context of living with MS. Symptoms and possible solutions are discussed in a relaxed and positive manner. Mention is made of specific symptoms of MS which can complicate matters such as fatigue, weakness, spasticity, continence, pain and depression. The booklet is an informative and interesting read for all men and their partners living with MS.

‘WORKING

WITH MS’ MS LIFE – SPRING 2012

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WORkSHOPS ON OFFER Attendees from previous workshops said:

“These workshops are a great way to find out the information I need. Also good it was held on a Saturday so I could attend.”

Are you living and working with MS? Have you heard about our new ‘Working with MS’ workshops?

These have already been held in Ipswich, Springwood and Nerang this year with a positive response from people with MS and their partners who attended.

The workshops include presentations from an MS Queensland staff member, Employment Support Service and Maurice blackburn Lawyer.

The sessions cover a range of

Sexuality and MS – a guide for women Publication by MS Trust – 2011.

This guide has been produced by the MS Trust for women who have MS and are finding it hard to enjoy fulfilling sexual activity.

It explains “how MS can impact on a women’s sexual response and offers some practical solutions for coping with symptoms which can interfere with sexual activity. Not all women with MS will find their sex life is affected. Not all sexual problems are related to MS.” The booklet is designed for women to pick and choose those sections applicable to them throughout are suggestions from other women living with MS on how to minimise any negative impact of MS on sexual and intimate relationships.

This booklet and the “Sex and MS – a guide for Men” booklet, give practical information and advice in a readable and comfortable format. Much of the content has been provided by women and men living with MS. For further information call our InfoLine on 1800 177 591 and ask to speak to our specialist MS Nurses.

To register or for more information topics from the pros and cons of disclosure, employee and employer rights and responsibilities, strategies and services to assist in the workplace and insurance, superannuation.

Since these workshops have been held, Maurice blackburn Lawyers have noted an increased number of calls from people living with MS and have assisted them to make informed decisions regarding their superannuation and insurance.

People with From the Chairperson of pwMS Support Groups, Jenni

Every individual’s path comes with daily challenges and sharing these can bring empowerment to others. This can be extended to contacting your MP. As encouraged by Natalie in the Advocacy update, we can bring great influence to issues of importance.

If you are able to, or perhaps with the assistance of a friend or family member, I encourage you to write to your local Member at this crucial time for the NDIS in Queensland.

Carmel, who has been living with MS for 14 years and lives at Annerley recently had a great win with her local Member when she wrote and asked Council to review the condition of

local footpaths. The letter itself took Carmel some time as she typed it using her chin support on her wheelchair. She is very proud of her efforts and so are we – well done!!

It was also great recently to join our highest fundraisers at the 2012 MS Brissie to the Bay celebration to say “thank you”. Having people with MS and their family and carers at the finish line on the actual day, was a very powerful statement for all those who rode. Many came over with heartfelt words for what they had achieved and it brought the cause closer to home when they rode over the finish line to a warm “hooray”.

The team at MS Queensland is buzzing in preparation for another MS Moonlight Walk – please join us if you can. It is fabulous evening of colour, fun, and ambience.

I know there are many regional activities in planning including fundraising,

A number of MS Support Group meetings are detailed on the homepage calendar of our website at

www.msqld.org

please contact our InfoLine on 1800 177 591 TOOWOOMbA Saturday 6 October 10am – 12.30pm Jacaranda Room, Grand Central Shopping Centre, Toowoomba. bRISbANE NORTH Saturday 20 October 10am – 12.30pm Chermside Library, Hamilton Road, Chermside.

SUNSHINE COAST Saturday 10 November 10am – 12.30pm Community Capital Centre, bokarina.

TOWNSvILLE Saturday 24 November 10am – 12.30pm MS Queensland Office Northtown, 280 Flinders Street, Townsville.

advocacy, as well as those designed to lift awareness of MS in the community and the teams are looking forward to updating everyone as soon as possible.

I would encourage you to keep in contact with your support group and all of the information on the MS Queensland website www.msqld.org for regular updates on what is happening in our world of MS. There is much happening in the MS world today, bringing hope and understanding.

Jenni pwMS Support Groups Chairperson

NEW pARENTS WITH MS

GROUp – TOOWOOMbA

The Toowoomba MS Support Group recently established a ‘Parents with MS’ group to bring together parents who are living with MS and their families. The group started last year with seven parents with MS who meet regularly to share how they are coping as a parent with MS.

Joanna who started the group said “our meetings are a mix of emotions with serious discussions but many more laughs as we are reminded that we are not alone on this journey and can totally relate to one another.

“Some of us also enjoy the opportunity to have our partners and children meet other people in the same situation. It is harder for their support needs to be met when they need someone to talk to that actually understands what living with someone with MS is like.”

The group meets once a month for morning tea at a member’s house for an open discussion on how each person is feeling at the time. For more information or to get involved in this group contact Nicole on 07 4564 9435 or email witchyniki@optusnet.com.au

MS LIFE – SPRING 2012

I hope you enjoy reading the information in MS Life and learning more about people living with MS, their stories, and perhaps how it may or may not reflect your journey. I am continually impressed when meeting so many people who share their stories which reflect the strength and power we all exhibit to get through each day.

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www.MoonlightWalk.com.au

REGISTER NOW

FOR BRISBANE’S ANNUAL RIVERSIDE WALK

The Parklands at South Bank Walk starts 6pm YOU can make a difference by walking 5km or 10km by moonlight to help raise $300,000 for people living with multiple sclerosis.

FR ID AY

19 O

C TOBE

2 1 0 R2

P: 07 3840 0828 E: events@msqld.org.au www.facebook.com/MSMoonlightWalk Unless otherwise stated, the views expressed in MS Life and submitted photography are those of individual authors and MS Clients, and not of Multiple Sclerosis Society of Queensland (MS Australia - QLD). MS AustraliaProudly - QLD 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 Australia - QLD nor any of its employees, agents or contributors shall be liable for any supported by: errors or omissions in any material in MS Life, and in no event will MS Australia - QLD 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 Australia - QLD or the relevant copyright owner. Š 2012 Advertising Disclaimer: Advertisements are provided to assist consumers to locate and purchase suitable products and services. Multiple Sclerosis Society of 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 Multiple Sclerosis Society of Queensland is not liable in the event the product is not satisfactory.