MS Life Summer 2015/16

MSLIFE. summer 2015/16

MS QUEENSLAND’S PREMIER MAGAZINE FOR PEOPLE LIVING WITH MS

Carmel & Byron Home for Christmas

COOL

KEEPING in the summer months

NDIS in Queensland Pain in MS resources & support

2014-15 Annual Report Now Available

Connecting with MS Queensland If you’d like to keep in touch with MS Queensland’s activities, events and physiotherapy programs please visit our: WEB msqld.org.au FACEBOOK facebook.com/msqld TWITTER twitter.com/msqld YOU TUBE youtube.com/user/MSAustraliaQ Phone

07 3840 0888

InfoLine 1800 177 59 Fax

07 3840 0813

MS Queensland Locked Bag 370, Coorparoo DC QLD 4151 Sign up for the monthly MS Insight enewsletter via the website too, for even more regular updates on what is happening across the state in the MS community.

To make a donation to MS Queensland or for more information on what we do please call us.

ms queensland's christmas trading hours MS Queensland offices across the state will be closed for the Christmas period from midday Tuesday 22 December 2015 and will reopen on Monday 4 January 2016.

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If you have any issues or concerns with your MS during this period, please contact your local GP or closest hospital emergency department.

Acknowledgement: We wish to thank Carmel and Byron for the use of their image on the cover of this publication. Photo courtesy of Josh Kelly, Jack Harlem®

r o t i d e e h from t Dear readers, It is incredible to realise that this year has raced past and Christmas is nearly upon us once again.

At this time of year, I think it is important for us all to take a moment to reflect on our achievements, be they of any size, and stopping to appreciate the people around us that make up our lives.

This edition of MS Life is bursting with updates about our recent events including the record breaking MS Moonlight Walk (page 11) and Annual Conference AGM (page 15). There are also tips on how to cope in the summer months as the mercury rises (page 12), managing pain in Questions with Tim (page 18) as well as stories from a number of clients who are using their MS to discover interesting hobbies and how they approach each day.

Our cover story has been nearly 40 years in the making. It is a love story between Carmel and Byron, who didn’t let physical strength, distance or MS get in the way of their dreams of living together. After making the extremely difficult decision nine years ago for Carmel to move into supported accommodation with MS Queensland, this year they will celebrate their first Christmas at home, together, again. This is the powerful story of a man who rebuilt himself physically, to bring the love of his life home. Don’t miss it on page 16.

Thank you for your incredible feedback as part of the Annual Reader Survey in the last edition, it has been a wonderful insight into what you love about MS Life and how we can continue to improve the publication for you.

From all the MS Queensland family we wish you a Merry Christmas and a very Happy New Year. Stay safe and we can’t wait to see what 2016 brings!

Kindest regards, Shontiele Editor

what an incredible year it has been!

MS Queensland has not stopped helping people living with MS to get the best out of life; to advocate for change; and to search for a cure. Highlights of 2015 include: • celebrating 57 years of service to the MS community in Queensland; • supporting 2,298 people living with MS; • our MS InfoLine answering 1,781 phone calls and 394 emails for help; • we sent out 18,180 Information Kits and 4,522 resources were downloaded from our website; • delivering 3,128 sessions of physio and exercise therapy; • conducting 46 MS workshops and information sessions including MS webinars; • contributing more than $352,171 to MS research; • providing 10,469 bed days at Granston Lodge and Annerley Apartments; • MS Brissie to the Bay becoming the biggest charity bike ride in Queensland! and • raising a record over $610,000 through this year’s MS Moonlight Walk.

The end of 2015 also signals that after years of waiting, the NDIS is finally set to launch in Queensland next year!

The fine details of the July 2016 roll-out schedule have not as yet been released, but MS Queensland is here to support you every step of the way to ensure you achieve your unique goals and aspirations through the NDIS. If you don’t yet know what the NDIS could mean for you, I encourage you visit our website msqld.org.au/ndis.

Looking ahead, whatever the future brings be assured that the entire MS Queensland team is here, above everything else, to give you real hope, no matter what comes!

Season’s Blessings and a Happy New Year!

Best wishes,

Lincoln, CEO

CONTENTS PAGE 2–3 Christmas Hours From the Editors From the CEO PAGE 4–5 Trevor Oceans of Hope Why choose an MS specialist physiotherapist Renee's door to her new hometown PAGE 6–7 NDIS Early Queensland Transition PAGE 8–9 Living Positively with MS and MS Heroes Awards MS Queensland Physiotherapy services 2016 2015 ECTRIMS Conference Sativex PAGE 10–11 A ticket to Christmas dreams Client Story: Penelope MS Brissie to the Bay 2016 MS Moonlight Walk PAGE 12–13 Keeping cool in the summer months PAGE 14–15 Kiss Goodbye to MS MS Swimathons 2015/16 Big Dinner Party 2015 Annual Conference and AGM 2014-15 Annual Report PAGE 16–17 Carmel and Byron home for Christmas PAGE 18–19 Questions with Tim: Pain in MS MS Resources Support Group Forum Are you a member of MS Queensland?

PAGE 20-21 National Advocacy Conference Gift the gift of support this Christmas Living Positively with MS: Lindsey PAGE 22-23 A poem about MS Support Group Update Merry Christmas bauble Living with MS: Andrew PAGE 24 Calendar of Events

MS LIFE – Summer 2015/16

FROM THE CEO

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trevor Oceans of Hope

part 2 We met Trevor in our last MS Life edition before he set sail on the Sailing Sclerosis Oceans of Hope from Darwin to Singapore. Accompanied by four other people living with MS from around the world and five experienced crew members (including a doctor), they each rotated duties between cooking, cleaning, maintenance and general operations to ensure a safe and smooth arrival at their destination.

Following his return to Australia, Trevor was excited to share his experience and particularly enjoyed getting to know his other crew members living with MS. “The whole experience increased my awareness of other people dealing with their MS symptoms, with varying severities,” said Trevor.

“Mentally it has been a challenge for me to retrain my brain to know my physical limits and it was comforting to know I wasn’t the only one dealing with that adjustment.”

During their voyage, the Oceans of Hope yacht crossed the equator, which called for a maritime traditional Shellback ceremony held by the captain, to honour King Neptune. It was a very memorable experience to witness for Trevor and one he will reflect on fondly from his time on board.

The experience has rekindled Trevor’s love of sailing, with plans to head to France, where he will finish his Captain tickets.

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“I am so grateful for the whole experience and the new friendships I made,” said Trevor.

We are happy that Trevor had an amazing experience and that he is back on home turf, safe and sound. If you want to know more about the Oceans of Hope voyage, or to see some of the other participants’ experiences, please visit sailing-sclerosis.org.

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Why choose a Physiotherapist experienced with Multiple Sclerosis?

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MS was Renee’s door to her new hometown

For those readers who have consulted with an MS Queensland Physiotherapist you will understand the benefits of having an MS specific focus.

Commonly with a background in neurological physiotherapy, MS experienced Physiotherapists can help sort through what is MS and what isn’t, provide you with advice on the most effective way to improve your situation based on current research and prepare a personalised management plan to minimise the physical impacts of MS. Understanding MS related fatigue, pain and cognitive impacts assists an MS experienced Physiotherapist so they can work effectively with you to get the best out of your particular circumstances to maximise your outcomes. MS experienced Physiotherapists understand that they are part of your support network and are willing to be in communication with those people who support you in living with MS. Living with a life-long condition requires checkups along the way. At MS Queensland Physiotherapy, we advocate for people to have a check in with us

at least once per year or earlier if For further things start to change. Please call information, please contact MS Queensland Physiotherapy Linda Wilson-Marks from our to find out when we next will Physiotherapy department on have a clinic close to you.

07 3840 0841 or email linda.wilson-marks@ msqld.org.au

After Renee packed up her life in South Australia and headed to Townsville craving a fresh start, it was her MS that opened the door to her new community. Renee had spent some time volunteering for the MS Society of SA and first came in contact with MS Queensland to have a Tysabri treatment.

Renee had been experiencing some difficulties securing an appointment with a Townsville Neurologist, so she reached out to MS Queensland, who were able to see her for her treatment very quickly. It was from there that Renee sought support from local RSC Emily.

Since then Emily has helped Renee adapt to living in a new town through finding new friends at the Townsville support group and assisting with her housing and employment issues. Emily has also contributed to helping Renee better manage her MS symptoms by referring her to the JCU Physio program and the Chronic Condition Clinic.

We are pleased to hear that Renee is positively adjusting to her life in Townsville and better managing her MS symptoms.

MS LIFE – Summer 2015/16

MS experienced Physiotherapists have a comprehensive understanding of the range of signs and symptoms that can be experienced and their impacts on day to day living for all people living with MS, no matter whether the MS diagnosis was received last month or 20 years ago.

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NDIS ear queensl

Fast Facts

Early Queensland Transition There will be a progressive rollout across Queensland over three years from 1 July 2016 to June 2019.

The scheme will transition early in North Queensland ahead of the three year rollout.

LGA: Townsville City Townsville, Alligator Creek, Woodstock Reid River, Northern Beaches, Paluma, and Magnetic Island Eligibility: All children and young people under 18 years

People don’t have to be registered with Disability Services or any other Queensland Government service to participate in the scheme but have to meet the NDIS access requirements.

Existing commonwealth and state based supports will continue until eligible people start their plan with the NDIS.

The NDIS is expected to be operating state-wide by June 2019.

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It is estimated 97,000 people with disability in Queensland will participate in the NDIS at full scheme.

From 1 January 2016 the National Disability Insurance Scheme (NDIS) will begin to transition in the Local Government areas (LGA) of Townsville City, Charters Towers Regional Council and Palm Island Aboriginal Shire:

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LGA: Charters Towers Regional Council Alabama Hill, Columbia, Grand Secret, Lissner, Millchester, Mosman Park, Queenton, Richmond Hill, Toll, Towers Hill Eligibility: All children and young people under 18 years LGA: Palm Island Aboriginal Shire Palm Island, Fantome Island, Curacoa Island, Havannah Island, Brisk Island, Esk Island, Falcon Island, Eclipse Island, Barber Island, Fly Island, Dido Rock, Hayman Rock, Chilcott Rocks, Paluma Rock Eligibility: All eligible residents under 65 years of age

TOWNSVILLE AREA

ly and transistion THE STAGES OF THE LAUNCH You can expect the following stages to the early launch: From September 2015

The National Disability Insurance Agency (NDIA) and the Queensland Government will commence planning and preparation to implement the scheme STAGE 2

From October 2015

There will be sector and participant readiness activities planned. Keep an eye on communities.qld.gov.au/ndis for events planned STAGE 3

From January 2016

NDIA will commence the planning process with participants STAGE 4

From July 2016

The remaining 1000 eligible people will receive their plans

Around people are expected to be eligible for the NDIS in the early transition area.

1600

Up to of these people will receive their funded packages by 1 July 2016.

600

The remaining eligible people will receive their plans from July 2016.

1000

You need to be under 65 years

of age at time of rollout; and You need to demonstrate

significant impairment as a result of your MS. For more information, contact us at MS Queensland or your local RSC.

From April 2016

The first 600 participants will start to receive plans & supports through the NDIS STAGE 5

You need to be an Australian

resident; and

We will continue to keep you informed of updates about the NDIS rollout in Queensland, with local RSC’s being in contact as more details are released relevant to your area.

HOW WE CAN HELP MS Queensland is here to guide you, empower you and build your confidence to initiate the first steps in accessing the scheme.We encourage you to work with your RSC as you plan for NDIA discussions.

We have learned from the experiences of other MS Societies in national trial sites over the past two years, and have great insights into the experiences so far, of hundreds of people living with multiple sclerosis.

Please contact us for more information MS Infoline 1800 177 591 Email ndis@msqld.org.au Website msqld.org.au

MS LIFE – Summer 2015/16

STAGE 1

HOW WOULD I KNOW IF I CAN ACCESS THE NDIS?

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y LIVing positivel

S & WITH MS STORIE

RDS ms HEROES AWA

For five years MS Queensland has been running two campaigns to recognise the quiet achievements of both those living with MS, and others who assist those with MS and support the MS cause through different actions.

We are looking for the support and feedback from the MS community on ways that we can make these activities reflect the stories you would like to hear and to find even more ways for you to be involved.

Living Positively with MS has been championed by MS Ambassador, Mayor Paul Pisasale, where we have shared people’s stories of Living with MS to provide a helping hand from an individual’s perspective, particularly for the newly diagnosed.

While the MS Heroes has focused on the people who support those living with MS – their carers, family, employers – providing an opportunity to say thanks.

We have a short survey on our website that we would appreciate you completing so that we can keep improving these initiatives.

Head to msqld.org.au and click the banner on the homepage.

To share your story of living with MS or of someone in your support network and how they are living the MS Queensland values of Respect, Hope, Commitment and Collaboration, please send it through to Natalie Walsh, Advocacy Manager by post or email, natalie.walsh@msqld.org.au.

MS Queensland Physiotherapy Services 2016 For those people familiar with our Dutton Park, Chermside and Gold Coast Clinics you may have noticed some changes in the way we do things in past years.

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These changes have led to MS Queensland physiotherapists working in other areas of south-east Queensland to make MS specific physiotherapy and exercise available to more people.

The areas of Logan, Redlands, Ipswich, Springfield Lakes, Toowoomba and the Redcliffe peninsula have experienced locally based access to MS Queensland Physiotherapists for physiotherapy consultations and exercise group development in gyms, community halls and pools in 2015.

This development work of expanding the reach of MS Queensland Physiotherapy has also impacted on the communities of Rockhampton and Hervey Bay with

For further information, please contact Linda Wilson-Marks from our Physiotherapy department on 07 3840 0841 or email linda.wilson-marks@ msqld.org.au

the establishment of MS Queensland facilitated exercise groups.

This trend is set to continue in 2016 with the focus on strengthening our regional presence by building partnerships with local community providers in collaboration with our MS Queensland Regional Service Coordinators.

We are committed to finding ways to bring MS Queensland Physiotherapists with MS specialist knowledge and experience to other Queensland communities.

2015 ECTRIMS conference exciting new developments for MS treatments

There were hundreds of presentations over the course of the event, with a number of exciting presentations describing results of clinical trials for new MS treatments. Feedback from attendees about their time at ECTRIMS reveals a real sense of excitement about some of the promising developments that were presented at the conference.

One presentation reported promising early results from a phase two trial of anti-LINGO. Lingo is a molecule found in nerves and myelin-producing oligodendrocytes that appears to naturally influence myelin production. Blocking the actions of Lingo may help to promote myelin growth.

Early results of the Phase Two trial have shown that anti-LINGO may protect against nerve damage in people with acute Optic Neuritis, and also holds promise for other demyelinating diseases. This trial included several study sites in Australia.

For more information about the current research landscape for MS, head to the MS Research Australia website msra.org.au.

Sativex coming to Queensland The Queensland Government recenty announced its support of the controlled prescription of Sativex

by Neurologists, as an available treatment option for those living with MS and suffering from severe attacks of spasticity.

This pending change in legislation is an important move by the Queensland Government to provide an additional treatment option to our MS community, which although approved by the Therapeutic Goods Administration a few years ago has remained unable to be prescribed due to a conflict in the state-based legislations.

Sativex has been developed as an option for those experiencing severe spasticity as a result of their MS, that other medications have not proved effective in alleviating. Although this announcement is exciting, as it will mean another option available in the treatment toolkit for those with MS, it is only an announcement of a future legislation change.

That means, that the Queensland Government still need to have the legislation change passed through, and only after that will Sativex be able to be prescribed.

So at this stage, it is still a few months away until you will be able to work with your Neurologist to scope the suitability of this product for you.

We will update you in the New Year once that intended change has passed through Government!

For more information please contact our InfoLine on 1800 177 591 or email info@msqld.org.au.

MS LIFE – Summer 2015/16

In October the European Committee for Treatment and Research in MS (ECTRIMS) conference was held in Barcelona, Spain. This year’s conference attracted over 8000 people from around the world, all converging on Barcelona for the three day event showcasing the latest developments in basic and clinical MS research.

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CLIENT STORY

Penelope My Thoughts on Giving Up and Acceptance

Some people define giving up as admitting defeat. Some people define acceptance as undertaking something offered, perhaps a challenge of some sort.

A ticket to

Christmas

dreams!

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There is always one person that we have difficulty finding the perfect present for at Christmas time. With the chance to win a car or even a holiday, giving an MS Limited Art Union ticket this Christmas could be the best gift someone’s received this year!

Go to mslimitededition.com.au/gift to gift a lottery ticket this Christmas.

Recently I started using a wheelie walker, now known as Walter. Was using Walter admitting defeat? Or was the arrival of Walter a symbol that I had accepted the challenge of living my life well with MS? I cannot change the simple fact I have MS, but I can control how I deal with that fact.

My goal is to remain as independent as possible, for as long as possible. To do this I must stay as emotionally and physically fit as possible. Walter is helping me do this. With him I can enjoy life out and about with family and friends, or exploring on my own. Without him I

would lack the ability and Share with us confidence to do any of If you would like to share this. something with the MS community, we’d love to hear Without acceptance, a it! We’re always looking for sense of humour and information that we can share.

Walter, I would not be Please email your stories to living well with MS. mslife@msqld.org.au

The day will again provide distances for budding cyclists of all skills, with 10km, 25km, 50km and 100km courses taking in the sights of Brisbane and the bayside.

SUPPORTING THE MS CAUSE

The date is set for the 2016 MS Brissie to the Bay bike ride - Sunday 19 June 2016! Mark it in your calendars and join us for another recordbreaking day as we aim to raise $1.8million for people living with MS.

We are busy planning exciting things for the 26th Brissie to the Bay bike ride and we can’t wait for you to be part of it!

This year’s MS Moonlight Walk was one for the record books! Over 4,500 people walked to fight MS and raised over $600,000 making it the biggest Moonlight Walk in the 17 year history of the event!

It was fantastic to see so many creative costumes as people began their walk along the Brisbane River, over the Story Bridge, through the Botanic Gardens and back across to Southbank. The weather was perfect and the feedback from participants was overwhelmingly positive.

Our dedicated fundraisers surpassed this year’s goal of $500,000, reaching this milestone ahead of event day and have continued passionately to raise even more in the month following the walk! This amazing achievement means MS Queensland can continue to provide support services to those diagnosed with MS across the state.

MS LIFE – Summer 2015/16

Visit BrissietotheBay.com.au and register your interest now to be the first to hear when registrations open and get ready to take advantage of heavily discounted entry.

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Cool s h t n o M r e in the Summ

While the thought of the warmer months for some Queenslanders is exciting, for those living with MS, the knowledge of summer’s rapid approach brings with it worry about what new challenges the heat MAY bring with it and how to manage heat related symptoms as the mercury rises.

Please find some reminders that may assist you in keeping cool and reducing MS–related fatigue that is more prevalent in warmer weather.

Stay Hydrated

Find the right

time & plan to exercise

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Keep your home cool

Drink plenty of fluids but limit caffeine which can interfere with sleep and consequently add to feelings of fatigue. If you aren’t feeling refreshed from your water, there are also hydration drink products, including ice blocks available.

Conduct your exercise in a cool environment; in air conditioning; in the early morning or late evening when the temperature lowers.

Seek out a local aquatic class or talk to your physio about what exercises you can do at your local pool. In addition to being in the water, there is the extra social benefit of taking part in a class at your local pool, where you can meet new friends within your community! eep air moving around your home with K an oscillating fan. This can also be effective in moving cool air from your air conditioner between rooms.

If you are already using your air conditioner, consider keeping it running at the same steady temperature. This will lighten the heavy work of the air conditioner needing to cool down the room from a warmer temperature multiple times.

Cool your body

from the inside

Cool your body

from the outside

Plan your day

Drinking cool or iced drinks from the fridge and sucking on ice cubes will help you remain hydrated. Keep an eye though on not too many soft drinks with sugar. A squeeze of lemon in your water or ice cubes can add a refreshing twist on a glass of water.

Use a spray bottle to lightly spray water over your face and body, with a fan blowing on you.

Chill down a handtowel, bandana or neckties in your fridge or freezer and wrap them around your neck or head. With the fridge already running, this can be an energy efficient option to keeping cool.

Try to plan your appointments or errands for the morning or before the day heats up too much.

When getting into a car that has been out in the sun, open the door to let the hot air escape, then get the car and air conditioning running for a while before you get in, giving the inside of the car a chance to cool down before you get in.

For more keeping cool tips please contact MS Infoline 1800 177 591, visit the MS Queensland Resources on our website or contact your RSC for assistance.

To assist with the increased energy costs for people living with MS, a Queensland Energy rebate is available from the Queensland Government for Queenslanders who hold a Pensioner Concession Card or a current Health Care Card.

The Federal Government also provides an Essential Medical Equipment payment if you have MS and hold a Commonwealth Concession Card. For information regarding Energy rebates information, please contact Natalie Walsh natalie.walsh@msqld.org.au or 07 3840 0823.

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MS LIFE – Summer 2015/16

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SUPPORTING THE MS CAUSE

2015/16 s n o h t a m i ms sw AY E V E R Y DYEAR! OF THE In July MS Queensland announced it would be merging Community Fundraising with the Kiss Goodbye to MS u campaign, which raises vital funds to continue research into a cure and cause for MS, as well as improved treatments. One of the added benefits of this change has been the ability to create an online page for individual's fundraising events, which makes gathering donations and support significantly easier.

Kiss Goodbye to MS is your chance to unleash your creativity and come up with innovative and interesting ways of raising funds. In the last month alone we’ve seen over $30,000 raised through a range of activities including Melbourne Cup functions, a movie night and Brisbane’s biggest ever Boot Camp. You can pretty much turn anything you are interested in, into a way to raise funds and the Kiss Goodbye to MS team at MS Queensland are here to provide you with all the resources and support you’ll need to make your event a huge success.

Jump onto our new website at FightMS.org.au to be inspired and sign-up.

The 2015/16 MS Swimathon season is underway with four highly successful swims held across South-East Queensland, including the first ever Swimathon on the Sunshine Coast. A great time was had by all with celebrity swimmers and stacks of first-time participants being some of the highlights.

MS Swimathons are an important part of MS Queensland’s calendar, especially in regional areas, as they bring the MS community together to not only raise money for local services, but to build better relationships, support networks and to raise awareness of MS within the local community. We’ve seen many examples this year where people who have been living with their MS in isolation, have come along to the Swimathon and been able to connect with others living with MS. With the Swimathons now becoming a celebration of the incredible work each MS community has accomplished throughout the year.

Focus now turns towards the second half of the season with Swimathons being held on the Gold Coast (27 February), Mackay (13 March), Rockhampton (19 March), Cairns (16 April) and Townsville (1 May). If you live in one of the regions, we’d love to see you in 2016!

Registrations open in December for the Gold Coast swim and January for Mackay, Rockhampton and Cairns, so jump onto MSswimathon.com.au and sign up to be part of the fun.

BIG DINNER PARTY MS LIFE – Summer 2015/16

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Thanks to your support we have experienced great success in the community with Big Dinner Party over the past few years, holding hundreds of dinners, bbqs and high teas across the state to support people living with MS. The great news is that you don’t need to wait until March to hold a Big Dinner Party – you can now do it at any time of the year!

Any dinner party or celebration can be turned into a Big Dinner Party and with Christmas just around the corner, a Big Christmas Party is a great opportunity!

The team at MS Queensland is here to help get you underway, so head to BigDinnerParty.com.au to get your party started!

2015 Annual Conference and AGM wrap up

On Friday 27 November, we held our 4th Annual Conference at the Southbank Institute of Technology.

The program included special guest presentations from Ms Deborah Farrell, MS (Victoria) with an update and insights about the trial sites of the NDIS in NSW/Victoria/ACT including specific examples of how the NDIS has impacted individuals living with MS in those trial areas.

opportunity to ask questions of MS Queensland as an organisation, NDIS specific queries, more information about our fundraising and service delivery, as well as clinical questions. With some very robust questions and discussions occurring.

Attendees were also provided with an update on notable research into MS being conducted both within Australia & across the globe, including current hot-topics in treatment developments from Dr Julia Morahan, Deputy Head of Research, MS Research Australia.

For those who were unable to attend this year’s conference, videos of our guest presentations and panel discussion are now available on our website To help us in continuing at msqld.org.au. to improve the Annual Conference and AGM next year, please provide your valuable feedback to us by email at mslife@msqld.org.au

Including the return of last year’s successful panel style discussion, this year focused on providing attendees the

The 2014-15 MS Queensland Annual Report is hot off the press and now available for download from our website.

This year’s report theme is ‘collaboration’ and details the importance of fundraising events in raising money to provide the extensive support services available across the state. It also outlines how we are investing now into the future of MS Queensland to continue working with the MS community for future years, under an NDIS environment.

Most excitingly we share the stories of six people living with MS and how they have embodied the value of ‘collaboration’ to change themselves, their lifestyles and living environments to continue living their best lives, with MS. An e-version of the report can be downloaded from our website msqld.org.au. If you would like a hard copy posted to you in the mail (within Queensland) please call us on 07 3840 0888.

MS LIFE – Summer 2015/16

2014-15 annual report

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&

Carmel Byron home for Christmas Carmel and Byron have been married for 39 years, they have raised two strong and successful children in that time, ran their own business and built their lives at the base of Mount Coolum on the Sunshine Coast, all while Carmel has lived with MS since being diagnosed two weeks before Christmas 1998.

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“Up until early 2000 my mobility was mostly fine, I needed a walker and would sometimes stumble over myself as I got around. But as I continued to deteriorate, I needed Byron more and more to help me, however with his own back injury, moving me around was causing us both pain.

One morning as Byron lifted me out of bed, I saw on his face just how excruciating it was for him, and I just said to him, it’s time.”

It’s time meant that Byron and Carmel worked with MS Queensland to find Carmel a respite place at Granston Lodge initially, and then a more permanent place at the Annerley Apartments, where Carmel advocated for footpath and traffic safety improvements for the residents, during her nearly 5 years living there.

“I was stuck almost doubled over, and knew that I needed to build my own strength and heal my back before I would be able to help Carmel at our home again. I got a daily physio routine worked up for me, and I did those exercises every day reminding myself what I was working for. So after nearly 5 years of Carmel living at Annerley, I spoke to MS Queensland and just said, ok let’s bring her home.” Byron shared, as his chest heaved, feeling the emotion again that he wanted the love of his life home with him.

When asked what the best part about coming home was, Carmel told us of the drive home and her plans for Christmas.

“As we came over the Maroochy River Bridge, I saw the mountain and I said to Byron, I’m home. I’m finally home.

I was so happy that I cried, because I never thought it would be possible to come home again.”

“This will be our first Christmas at home as a family again in 7 years. The boys will have a beer together and we take a swim in the pool, or the kids will start a water fight with each other. The house will be full of laughter and that’s the best sound I could ever wish for.”

Carmel drives herself around in an electric wheelchair that she controls using her chin, and although her physical movement is now limited to her head and face, Carmel’s passionate personality and spark is certainly written all over her face! One cheeky smile as she throws a sideward glance at Byron shows that flicker of love for the man who rebuilt himself, to bring her home.

To find out more about the services we offer and how MS Queensland can collaborate with you to achieve your goals, please visit our website msqld.org.au or contact our InfoLine on 1800 177 591 or email info@msqld.org.au.

MS LIFE – Summer 2015/16

When talking with Carmel and Byron, it is easy to see the love and respect that they hold for each other, particularly as they share their story of determination to have Carmel home again for Christmas.

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questions with tim

Pain in MS Pain in MS can range from benign to brutal, and is yet another common and invisible symptom.

Pain is a subjective experience with location, severity, intensity, and degree being “what the person says it is and occurring when they say it does” (McCaffery, 2006).

Pain in MS is characterised objectively by its impact on mood, role, relationships and ability to function including work, sleep and a person’s enjoyment of life.

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Pain in multiple sclerosis may be under or over treated as providers attempt to understand and manage the subjective nature of pain. This subjectivity, coupled with the varied causes, contributes to the treatment challenge. It will come as no surprise to anyone living with MS related pain that treating it is trial and error, and in many cases requires a multidisciplinary approach to achieve some degree of control.

There are two main types of pain in MS. Unfortunately people living with MS can have combinations of the below.

• Nerve pain (neuropathic pain) which is caused by damage to the nerves in the brain and spinal cord.

This includes altered sensations such as pins and

needles, numbness, crawling or burning feelings.

Examples of nerve pain includes painful sensations in the side of the face, called Trigeminal Neuralgia, and a tight feeling, often around the chest, called the MS hug. Pain in the limbs is also very common.

• Musculoskeletal (nociceptive – visceral and somatic) pain which is caused by damage to muscles, tendons, ligaments and soft tissue, for example neck or back pain caused by changes in posture or sitting for very long periods, bladder spasms or muscle spasms.

There is also psychogenic pain which is often the result of other MS symptoms such as anxiety or depression, on top of chronic pain symptoms. Managing pain is achievable, and like many MS symptoms it can be incredibly variable and can be temporary.

Want an MS question answered?

If you have an MS-related question to ask Tim, our Manager of Specialist Education, please email Tim at mslife@msqld.org.au.

pain AND MS Pain can be a common symptom of MS. For some, pain is usually mild and can come in short bouts. For others, it may be more troublesome and long lasting, having a significant impact on daily life. It's often made even more difficult when pain appears invisible to others.

There are information and treatment options available to assist you in managing your pain and limit its impact on your life. At MS Queensland we have several resources to assist with pain management.

Managing pain for people living with MS This booklet outlines why people with MS get pain, where to get help, how families and carers can help, treatments and tips on managing pain and also includes a personal pain management plan.

Pain – Factsheet This factsheet discusses pain, what causes it, what to do about it and provides tips on managing and treating pain.

Managing Pain (Information Sheet) This information sheet outlines some of the common types of pain in MS, getting help for pain and pain management strategies.

For more information about any of these resources, or to have a copy mailed or emailed to you, please call our InfoLine on 1800 177 591 or email us at info@msqld.org.au.

MS Support

Groups FORUM Supported by the Ann Langley Scholarship We were excited to have so many new and returning faces for the now annual People with MS Support Groups Forum from across Queensland on Thursday 26 November in Brisbane.

Last year’s event was rocked by the severe storm that battered the city, including our Dutton Park offices, so it was wonderful to experience the beautiful weather that Brisbane turned on for our attendees.

Held alongside our Annual Conference and AGM, groups came together to share ideas and new ways of meeting the needs of people with MS through our peer-to-peer support group network.

With over 37 support groups now active across the state, we encourage everyone to reach out and find a group near you!

ARE YOU A

MEMBER? Edition

Autumn

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4

Walks

PREMIER

FOR PEOPLE

LIVING

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Autumn

Becoming a member of MS Queensland gives you voting privileges at the AGM, and helps support the ongoing provision of publications such as MS Life that deliver important information about MS. Membership is only $33 a year and can be done easily by simply calling 07 3840 0888 or visit msqld.org.au to complete the application form.

Summer

Volume

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TO: Hon Secretary MS Queensland Locked Bag 370 Coorparoo DC QLD 4151

Application Date: ____ /____ /____ Phone: (07) 3840 0888 Fax: (07) 3840 0813 Email: mssociety@msqld.org.au

I wish to SUBMIT an application for Membership of MS Queensland.

I wish to RENEW my application for Membership of MS Queensland.

I enclose my subscription for:

Annual Ordinary Membership $33.00 (inc. GST) (1 July – 30 June) Life Membership $330.00 (inc. GST) iding ensland?

(Life Membership can only be granted following application for Ordinary Membership) us in provarch to find a MS Que , assists rese ber with $33 a year ing edge MS a mem MY pERSONAl DETAIlS ARE AS fOllOWS: h is just lead Are you us, whic about MS and MS hip with such as Full Name ........................................................................................................ ications Memberson and education publ site. ugh Address ........................................................................................................... informati multiple sclerosis. ive thro on our web ent tre you rece on cont cure for mation Resource Cen mati infor ........................................................................................................................ t the infor mitted to ne des the Online back abou This incluInsight and our anyo are com Postcode ................................................ Phone No ......................................... tive feed , MS Life. We resource to posi its Life, MS ict mation ive very magazine es Email ............................................................................................................... not restr ble infor used larly rece we do . But this com We regu hip client-foc ide this valua and as such only in MS g to prov Date of Birth .................................................................................................... members support. of our flags continuin has an interest Queensland your who we need MS n to MS services support plEASE INDIcATE YOUR INTEREST IN MS QUEENSlAND circulatio tantial cost and ns and your at a subs publicatioplease show with MS I have MS I just want to support the value the hip then So if you nd provides your members you can A family member has MS MS cause Queensla or renewing a fee of just $33 becoming I know someone with MS Other ........................................ ng t ider by joini nd today. For might cons rying abou Queensla a year, or you 0 to avoid worstrength of MSMY SUbScRIpTION, AS SHOWN bElOW, IS ENclOSED: Help support nd for $33 The us ! just d join ber for ever again committe Ordinary $ ...........................

MS Queensla a Life Mem membership active and our good your g Life $ ........................... es from ome your payin and our nd com welc Donation $ ........................... (All donations $2 and over are tax deductible) Queensla we would work! and k.

TOTAl $ ........................... to have members our vital wor ortunity ion to the opp ensland at the contribut pAYMENT DETAIlS: Que ll also have ber you’ e plans of MS er. emb cial mem futur Please make cheques payable to Multiple Sclerosis Society of Queensland and As a finan on the exciting (AGM) in Nov overleaf OR please charge my Visa M/Card Amex Diners the form behalf Meeting your say General completepossible. On Annual to simply as ard ber, Card No __ __ __ __ / __ __ __ __ / __ __ __ __ / __ __ __ __ look forw nd as soon me a mem To beco to MS Queensla with MS, wefree from MS Expiry Date__ __ / __ __ Name on card ......................................................... it ld living s rn wor a retu enslander ort for of all Que bership supp ct.

Return this form with your payment to MS Queensland using the enclosed your mem stating impa Reply Paid envelope. Thank you for your support. deva and its

have your say

WWW.MSQlD.ORG.AU 30/03/2015

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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.

CEO Hopper, Lincoln

2_sd.indd

1

1:24 pm

MS LIFE – Summer 2015/16

s e c r u o s e MS r

19

National Advocacy

Conference in Canberra MS Australia hosted a two-day conference for National MS Advocates in Canberra during October to plan focus areas for the next twelve months of Advocacy work to be undertaken, with a continued goal to influence policy, generating positive change for people living with MS. While in Canberra, MS Advocates met with key policy makers and politicians, updated information from each state was shared and strategic direction confirmed for action focussing on the Federal Election in 2016 and the 2016/2017 Federal Government Budget submission.

Key topics for action to be championed from a national level, and are already being driven in Queensland, included the NDIS, a single national medical energy concession and employment retention for people living with MS and other progressive neurological conditions.

To highlight these issues, a Parliamentary Morning Tea was held in Parliament House hosted by co-Chairs for the

MS LIFE – Summer 2015/16

20

Parliamentary Friends of MS, Senator Deborah O’Neill and Senator David Bushby, both who have a personal connection to multiple sclerosis.

If you would like to discuss meeting with your State or Federal politician to share issues of importance to you and the MS community, please contact Natalie Walsh on 07 3840 0823 or by email, natalie.walsh@msqld. org.au

We are looking forward to a very busy new year, as we continue to work with MS Australia and other state societies to share issues of importance with every level of government, particularly with a Federal Election scheduled in 2016.

The amazing generosity of every day Queenslanders helps people with MS achieve truly extraordinary things. It is absolutely crucial that we continue to work to give hope to people living with MS. This Christmas, show your support and make a tax deductible donation on the donation slip on the back of this magazine or visit the Donate section of our website msqld.org.au.

Keep

up to date

by

updating

Y Client Story: LINDSE

y l e v i t i s o P g n i v i L

your details Have you updated your contact details with us recently? Have you recently obtained an email address or have you chosen to only have a mobile phone for contact? The best way for us to keep communicating relevant information about MS and activities in the MS community to you, is for you to keep your contact information up to date with us.

with MS

My first MS 'attack' was in 1999, when I was 27. I was diagnosed with Optic Neuritis, which could lead to MS but might not. But what was MS? I didnâ&#x20AC;&#x2122;t have a clue!

I couldn't see out of my right eye for three months, but then forgot about it all until my second 'attack' occurred in 2001. Off to a Neurologist I went, and then sent for an MRI. I was officially diagnosed with RRMS in November 2001.

Please contact the MS Queensland office to update your details, so that we can continue to contact you as relevant. Phone 07 3840 0888 or by email to mssociety@ msqld.org.au.

When I told my mother she immediately made plans to sell their townhouse so they could move into a low set house with ramps. Although the thought was genuine, it was in that moment, that I determined I would fight with all I had and that I had MS, it didn't have me!

I started on Betaferon, which was daunting at first, then it just became a way of life. It is even funny how what excites me has changed, as I was over the moon when it no longer had to be refrigerated!

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My mantra is mind over matter! And I keep reminding myself that MS you will NOT win! You suck because you make me tired, but that is all you get away with now!

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I lost 43 kilos with Jenny Craig, and attribute my health and mobility now to taking that huge step, as I am now more confident, spend more time in the sun (love you Vitamin D) and walk 5 kilometres, almost daily! I am also happy to share that I have been 'attack' free since September 2003, an incredible 12 years and I now take Gilenya capsules which hurts a whole lot less than those injections!

actively donation

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The next two years were pretty horrible with another four 'attacks', all Optic Neuritis! Sadly, it was during this time also that my nephew died from leukaemia. I looked at my life and whilst there were some things I couldn't change, one thing I could change was my weight and consequently my health.

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A poem about written by Kay Gorring

MY SISTER, MY BROTHER You’re in there and you’re shaking and I know your heart is breaking.

The doctor comes and says – “you have MS”.

The diagnosis rocks you as his explanation shocks you.

You take this news by bravely nodding yes.

Yet while those words are stinging and their hammer-blow’s still ringing that’s when you know you won’t concede defeat.

It’s courage they’ve incited and endurance you’ve ignited; you charge at it, head on, with no retreat.

You set your course for flying and you’re learning and you’re trying to find those ways that keep yourself on top.

It’s love that keeps you striving and your joy that has you thriving while waiting for the thing that makes it stop.

So should you feel you’re slipping or you’re past that point of tipping and weariness has pushed you to despair.

When fears seem at their starkest and your thoughts are at their darkest; that’s when you’ll turn and see me standing there.

MS LIFE – Summer 2015/16

22

I understand not knowing of a place I can’t be going, its journey only you alone can make.

But I’ll be there to confide to; I’ll be there right beside you and always with a hand for you to take.

As the MS Queensland State Convenor for people living with MS, I have the privilege of representing my MS “family” in numerous ways along with attending certain MS Queensland functions throughout the year. It is because of this volunteer role that I am able to meet many people living with MS and their families, which is indeed a very humbling experience.

Over the years I have watched the Support Groups grow, change and share so many stories of the courage, power and endurance that comes from living with this insidious condition.

Most of all, it is the Support Group camaraderie that creates the bonds and encouragement for so many fellow MS-ers.

They are indeed an integral part of the foundation support and friendship shared with like-minded people.

There has been a great deal of awareness and funds raised for support services as a result of MS Queensland’s events like the Enerflex MS Brissie to Bay bike ride, the MS Moonlight Walk and the various MS Swimathons that have far exceeded fundraising goals. Some of the Support Groups also hold very successful fundraisers within their own areas. All of these events are successful thanks to the fabulous efforts by champion volunteers who make everything possible. Thank you!

As always, the Ann Langley Support Group Forum and the MS Queensland Annual Conference / AGM were wonderfully supported and immensely enjoyed by all who attended both locally and from around the state. A huge thank you to the team from MS Queensland for organising both events and creating another memorable closing to the year, which will lead us into what is looking like an incredible 2016 for people living with MS. Blessings and best wishes for Christmas and the New Year, Jenni

Unless otherwise stated, the views expressed in MS Life and submitted photography are those of individual authors and MS Clients, and not of MS Queensland. MS Queensland does not expect or invite any person to act or rely on any information, statement or opinion in MS Life, and readers should make and rely on their own inquiries, and obtain professional advice, before making any decisions or giving any advice arising out of any such information, statement or opinion. Neither MS Queensland nor any of its employees, agents or contributors shall be liable for any errors or omissions in any material in MS Life, and in no event will MS Queensland or any of its employees, agents or contributors be liable for any loss or damage arising from reliance on any information, statement or opinion in MS Life. Apart from any use permitted under the copyright act, no material in MS Life may be reproduced or communicated to the public in whole or in part without written permission from MS Queensland or the relevant copyright owner. © 2015 Advertising Disclaimer: Advertisements are provided to assist consumers to locate and purchase suitable products and services. MS Queensland does not endorse any one product or service over another, nor do we receive any commission on sale of items. Consumers are encouraged to discuss the options for purchase with the particular supplier as MS Queensland is not liable in the event the product is not satisfactory.

merry christmas from the ms queensland family. this year we have included a christmas bauble, to the right, for you to Cut out and hang on your tree. thank you for your support throughout 2015.

Just 12 months ago, friends of Andrew would’ve hardly recognised the man he is today. “Wow you’re buff,” are some of the compliments coming his way and he says it’s all thanks to his consistent participation in lawn bowls and karate.

Living with MS for 17 years, Andrew’s symptoms resulted in him requiring a wheelchair, as his walker left him extremely fatigued. “The best thing that happened was my wheelchair. Of course it felt like a setback, but I choose to look at the positives and now I am able to compete in wheel chair lawn bowls and karate,” said Andrew.

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Andrew recently competed in the karate Queensland State Titles, where he was awarded a bronze medal against able bodied competitors.

“I do karate for myself and I can’t recommend it enough! I am physically stronger, my stamina has improved, along with my mental alertness and memory,” said Andrew.

Due to his new found strength and confidence, Andrew can now do his grocery shopping without any assistance. “I can now easily pick up a box of water off the shelf and place into my trolley. Not to mention wheeling not only myself around the aisles, but also a trolley full of groceries,” Andrew happily reported.

Andrew realises karate and lawn bowls may not be for everyone, but he encourages those with mobility issues and MS to find something they love to keep you active and alert.

MS LIFE – summer 2015/16

Living with MS Andrew

23

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