update spring 2012

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Independent Living Booklet Launched! Senator Catryna Bilyk, Rhoda Gill from Multiple Steps Forward and Dale Eastley celebrate the launch of Independent Living. The booklet Independent Living, which was produced by the MS Society of Tasmania in collaboration with Multiple Steps Forward, was officially launched on 28th August by Senator Catryna Bilyk. The booklet aims to provide information to enable people who have been diagnosed with MS to manage their own health and maintain a positive, fulfilling and independent lifestyle throughout their lives. The booklet includes information on Health and Wellness, Relationships, the Home Environment, Financial, Legal and Employment issues, and Transport. A table of Key Contacts is also included. Much of the information given in the booklet has practical applications for people living with other chronic health conditions as well. If you would like a copy of the booklet, either in print form or by email, please contact the office of the MS Society on 1800 676 721 or [email protected] The booklet is also on our website at www.msaustralia.org.au/tas. MS Update Spring 2012 Inside this issue Independent Living Booklet Launched! 1 CEO’s COLUMN 2 Essential Medical Equipment Payment 3 Introducing The Counselling Corner 4 Men’s Support Group 5 Introducing MS Events 6 Research, Aids And Equipment Forum 6 MS Advocates Update 8 Hobart City Council 50 and Better Centre 9 Research Opportunity – Melbourne University 11 MS Update Spring 2012 1

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Page 1: Update Spring 2012

Independent Living Booklet Launched!

Senator Catryna Bilyk, Rhoda Gill from Multiple Steps Forward and Dale Eastley celebrate the launch of Independent Living.

The booklet Independent Living, which was produced by the MS Society of Tasmania in collaboration with Multiple Steps Forward, was officially launched on 28th August by Senator Catryna Bilyk. The booklet aims to provide information to enable people who have been diagnosed with MS to manage their own health and maintain a positive, fulfilling and independent lifestyle throughout their lives.

The booklet includes information on Health and Wellness, Relationships, the Home Environment,

Financial, Legal and Employment issues, and Transport. A table of Key Contacts is also included.

Much of the information given in the booklet has practical applications for people living with other chronic health conditions as well.

If you would like a copy of the booklet, either in print form or by email, please contact the office of the MS Society on 1800 676 721 or [email protected]

The booklet is also on our website at www.msaustralia.org.au/tas.

MS Update Spring 2012

Inside this issueIndependent Living Booklet Launched! 1

CEO’s COLUMN 2

Essential Medical Equipment Payment 3

Introducing The Counselling Corner 4

Men’s Support Group 5

Introducing MS Events 6

Research, Aids And Equipment Forum 6

MS Advocates Update 8

Hobart City Council 50 and Better Centre 9

Research Opportunity – Melbourne University 11

MS Update Spring 2012 1

Page 2: Update Spring 2012

MS Update Spring 20122

CEO’s COLUMN

As an organisation there are many challenges and opportunities before us which I am confident we can address to the overall benefit of you our clients, family members and carers.This morning I had a very rewarding conversation, together with Sue McGregor, MS Tasmania’s Clinical Research Nurse Coordinator, who is located at the Royal Hobart Hospital, with a pharmaceutical company that is in the final stages of obtaining approval for a new oral therapy for release in the middle of 2013. We discussed, in some depth, the issues that need to be considered so that the appropriate advice can be provided to you to enable you to make an informed decision. These are new and exciting times. As these products come on the market they will potentially address some of the gaps in the current treatments.There has been a lot of media commentary on the National Disability Insurance Scheme with regard to the potential benefits that will flow from its introduction. What has become increasingly clear is that the National Neuromuscular Alliance, which was formed some three years ago, is an appropriate forum to bring together the various organisations to advocate on behalf of respective member organisations. On 29 June 2012 the initial meeting on this group focusing on NDIS was held and an overall strategy and approach was agreed. Included in that agreement was that each of the States and Territories should form similar alliances and advocate from a State perspective. The members of the Neuromuscular Alliance Tasmania (NMAT) have met and it has been agreed that MS Tasmania’s Manager Client Services, Mary Langdon, will be its Project Director for this work in addition to her current responsibilities. As the issue progresses update reports will be provided.The Advocates program is working extremely well. We are in the process of recruiting additional Advocates in order to be more representative across the State and reduce the workload of the existing Advocates. We are delighted to announce our new Southern advocate, Lynda Hanlon, who we know will be a positive and effective advocate in our program.The major work associated with being a Quality Improvement Council Accredited organisation has been completed. The review commences on 17 September 2012 and will take place over four- days when the Assessors will review the Society as a whole. It is nice to be past the shortest day and that the days are starting to become a bit warmer.

Dale Eastley

“a pharmaceutical company that is in

the final stages of obtaining

approval for a new oral therapy for release in the middle of 2013”

Page 3: Update Spring 2012

Essential Medical Equipment Payment

Have your say!Feedback and suggestions on the newsletter and our services is always welcome. To have your say, please don’t hesitate to contact us at [email protected] or on 6220 1111.

This year, the federal government announced a new payment to cover the additional running costs for medically required heating/cooling and essential medical equipment such as electric wheelchairs, home ventilators, respirators and more.

This yearly payment of $140 commenced on the 1st July 2012, and will be paid each year without needing to reapply (unless your circumstances change and Centrelink are advised).

You may be eligible for the Essential Medical Equipment Payment if you, or someone you care for:

• use/s one or more pieces of qualifying essential medical equipment, or medically requires heating/cooling as a result of a specified medical condition, and:

• hold or are listed on a qualifying Commonwealth concession card, and you are:

• the energy account holder for the residence, or

• the partner of the energy account holder for the residence, or

• able to demonstrate that you, or the person you

care for contribute towards payment of the energy account for the residence.

To qualify for the Essential Medical Equipment Payment, a medical practitioner must certify that a piece of equipment is essential to manage the person’s condition, and the person has been advised to use the equipment at home; or that the person has a specified medical condition and is unable to regulate his or her body temperature because of that medical condition and requires medical heating and/or cooling in their home, and without medical heating and/or cooling, the person risks serious harm to his or her health.

Specified medical conditions include neurodegenerative disorders, stroke, brain injury and others.

You can apply for the payment online at www.humanservices.gov.au and either sign in or register for Centrelink’s online services. Alternatively, you can call 13 24 68 and request a form to be posted out to you.

MS Update Spring 2012 3

Page 4: Update Spring 2012

MS Update Spring 20124

Introducing The Counselling Corner

The Counselling Corner is a new addition to our Update newsletter. We hope that you find these pieces informative and interesting. Our inaugural article is written by Nick Norman who, for those of you who may not have met him, is located in our Launceston office.

Fatigue ManagementFatigue is one of the most common symptoms of people living with MS. There are few symptoms that can affect someone’s quality of life more than relentless fatigue. It can appear periodically or even as a daily struggle for those who are affected by it. Understanding the changes and taking responsibility for your health can help to lessen the impact of fatigue.

It can be easy for someone to assume that their fatigue is caused entirely by MS. Fatigue symptoms can also be exacerbated by a number of other conditions. Some influencing factors can be ageing, poor diet, dehydration and lack of exercise. It is important to consult your medical practitioner if you feel that fatigue is affecting your quality of life.

When someone is affected by fatigue, energy management is of extreme importance. We can often push ourselves past our physical capacity and our good

judgment declines. At times like this that we expose ourselves to risks of accidents and falls. When fatigue begins to set in, it is easy to become depressed or anxious about the future. Here are a few ideas to help you to manage fatigue:

Know your limits! Be realistic about what is possible and pace yourself.

Conserve energy! Making some small changes to your routine can help you to save your energy for activities that are important to you. Remember it’s okay to slow down!

Ask for help! Seek support from medical practitioners, friends and family.

Exercise! Partake in regular light to moderate exercise. This strategy has been proven to be successful in combating fatigue.

Rest! Rest when you get tired or when you have time. Taking short naps or rest periods during the day may help.

Talk to your GP, neurologist, an MS Counsellor or any member of the MS Client Services Team about the various strategies that can help to manage fatigue.

Missing from this photo is Darren Radley from the Hobart office – but he didn’t escape entirely! Darren has written an article featuring the Men’s Group to which his picture has been attached.

Page 5: Update Spring 2012

Men’s Support Group

Maternity LeaveOur Senior Case Manager, Lynsey Smith will be taking 12 months maternity leave from the 8th October 2012. Although we will miss having Lynsey around for 12 months, we offer our very best wishes to her and her husband Geoff for this most joyous and special occasion in their life. We look forward to hearing of the safe arrival of a new Smith family member.

Please don’t hesitate to contact a member of the Client Services team for support and assistance on: 6220 1111 for Southern region or 6343 1240 for Northern and North West regions.

Since January 2012 the Southern Tasmanian Men Living with MS Group has been meeting each month. The group’s current membership stands at 13 and continues to attract interest. Once a month the group meets at the Sandy Bay office where a topic is presented by a guest speaker, or group facilitator and MS Society of Tasmania Counsellor Darren Radley. In June 2012 we had a fantastic demonstration of Tai Chi by expert practitioner Bill Pearson, and the group got to join in and learn some Tai Chi moves that were able to be done sitting down. Every second month the group meets for lunch, at such places as the Dr Syntax Hotel, and Embers Restaurant in the Mercure Hotel. Over lunch the group is able to relax and get to know each other a little better.

There is a cross section of ages in the group and men from varied backgrounds, which makes discussion interesting and diverse. The success of the group thus far can be attributed to an opportunity each month for men living with MS to

talk confidentially about how they are feeling and thinking within the company of other men. This has allowed a comfortable and pleasant atmosphere to develop within the group. An added benefit of the group is the opportunity for participants to cultivate social and friendship networks outside of the group thus strengthening each other. If this group appeals to you then contact Darren

Radley on a Thursday or Friday at the MS Society of Tasmania on 6220 1111 or [email protected] for meeting dates.

MS Update Spring 2012 5

Ms Society Says Thank YouTo all participants in the MS Society of Tasmania Fathers Day Gold Bullion Raffle drawn Thursday 30th August 2012. Permit no. 50882. All winners have been notified. Ticket numbers were; 1st prize 45034. 2nd prize 27225. 3rd prize 92336. Quickback prize 12345.

Signed: Multiple Sclerosis Society of Tasmania, Permit Holder.

Page 6: Update Spring 2012

MS Update Spring 20126

Introducing MS Events Another new area for our Update newsletters. Our intention is that all events being held by our Society will be advertised in one area, plus updates and outcomes.

Melbourne Cup - 6 November 2012The MS Melbourne Cup Luncheon will be held at MONA again this year due to feedback received regarding the quality and location of the venue after last year’s event. MONA management are very supportive of the MS Society running this event on this day – when the race stops the nation.

We are planning a few new surprises on the day so that it feels different from last year’s successful event.

The Master of Ceremonies, Steve Liebmann who is an experienced national journalist, will also be a judge in the very popular Fashion Parade.

The price of this popular, high quality event, which covers a three course meal, drinks and vast opportunities to win a prize, is as follows:

Early Bird (before October 12) - $140

Table of 10 - $1350

Individual tickets purchased from 13 October - $150

A number of our tables have pre-sold, so if you would like to attend, please email [email protected] as tickets are selling fast!

Research, Aids And Equipment ForumA date for the diary! The Client Services Team is in the process of organising the 2013 Research, Aids and Equipment Forum, to be held on Thursday 14th February at the Glenorchy Civic Centre in Hobart’s northern suburbs.

The Forum will provide an opportunity for clients to learn about the latest developments in MS research and treatment options. There will also be a display of assistive aids and equipment on the day.

Once all the presenters have been confirmed and the details have been finalised, information will be available on our website and invitations will be sent to all clients.

Mud Dash - 6 October 2012Mud Dash 2012; bigger, better and MUDDIER! Back at Fulton Park, Forth with the final stages of the event being put together. We are excited to present the newly designed MS Mud Dash logo and televised advertising on TDT, which will be on air throughout the month of September...Register to be part of the 2012 MS Mud Dash success during September via the Go Fundraise website http://msmuddash.gofundraise.com.au/ Participate as an individual or as a team; invite your friends, family or colleagues to “do the dash in 2012”.MS Mud Dash is an exhilarating event and I encourage you to be part of this, spectators are welcome to enjoy the day with the MS Society of Tasmania, and to encourage those entering to complete the course! Good parking facilities are available on site, as well as activities for the kids and a fundraiser BBQ for lunch!

Page 7: Update Spring 2012

Megaswim OutcomesThe Launceston MS Mega Swimathon was held on June 16-17 at the Launceston Aquatic Centre with 8 teams and 125 swimmers raising $15,000 for people living with MS. This was almost triple what was raised last year!

Highest Fundraiser – Youth - Caitlyn Mills – Riverside Aquatic Juniors

Highest Fundraiser – Adult - Tahnee Hodgetts – Lemming Lapstars

Overall Winning Team - Comic ReliefLongest Distance Swum - Riverside Aquatic Seniors (108.7km)

Next year we are adding the top fundraising team as well. This year NCMCRS must be acknowledged having raised almost $3,500 and having seven – yes 7 – swimmers.

Our thanks must go to all participants and supporters of the MS MegaSwimathon events.

MS Update Spring 2012 7

Page 8: Update Spring 2012

MS Update Spring 20128

It is with much enthusiasm we continue with our concerted charter to develop, maintain, enhance and promote MS to our Local, State and Federal Parliamentarians.

We have initiated well developed and healthy professional relationships with many of our Parliamentarians and we keep on keeping on with ensuring MS, its management, challenges, research and awareness is maintained at all levels of politics.

We are totally committed to making absolutely sure MS is at the forefront of the political radar nationally. This has seen us recently very actively supporting the Keeping Cool Campaign for Tasmania and the National Disability Insurance Scheme (NDIS).

We were also able to be present at Tasmania’s Government House earlier this year to support World MS Day 2012.

Jenny and I very much look forward to additional Advocates for Tasmania being appointed shortly to broaden our presence state-wide and it is with much pleasure that we welcome Lynda Hanlon our new Southern Advocate in joining us in bringing forth issues of concern to the attention of our policy makers.

We are all very committed and appreciate the faith instilled in us to represent us all living with the daily challenge of MS. You can be very assured we are giving it our all! It is both our challenge and pleasure to make absolutely sure MS is out there and will not be politically shelved, forgotten or tucked away. Politicians come and go…We all don’t !

You may well see us over the next few months as we share in person more of our activities to some of the MS Support Group gatherings.

Best wishes Andrew Potter & Jenny Wallis

MS Advocates Update

Page 9: Update Spring 2012

MS Update Spring 2012

Hobart City Council 50 and Better CentreThe Hobart City Council provides the 50 & Better Centre as a place for activities for people aged over 50. Its purpose is to provide a warm, welcoming, cheerful and safe environment with a range of social, recreational, cultural and educational activities for the older people of greater Hobart.

The 50 & Better Centre is located at 108 Bathurst St, Hobart and offers a wide range of recreational and informative activities including:

• brain games, card games and board games

• musical activities – singing groups and ukulele lessons

• exercise groups including yoga and tai chi

• arts and crafts

• book club

• Probus Club

• Computing lessons

• Outings

There is even an opportunity each week to chat with the Community Nurse about health issues.

For more information about what’s on offer, contact the team at the Centre

by phone: 6234 1441

or by email: [email protected]

Keeping Cool Campaign OutcomeAs we reported previously, the Keeping Cool Campaign was unsuccessful in the State Government Budget. It is our intention to pursue this matter through the subsequent opportunities to make budget submissions. It has been agreed with TASCOSS that they will actively support any further submissions.

9

Page 10: Update Spring 2012

MS Update Spring 201210

STARRING STAFF MEMBERS

JAYNE ENGLAND AND KATE COADIntroducing Kate Coad and Jayne England - our Event Management Coordinators. Both Kate and Jayne work part time hours and can be contacted at [email protected] or at the MS offices on 6220 1111.Jayne studied beauty therapy and found great enjoyment in event organising through arranging her own very successful KGBTMS fundraising event in May this year. Jayne’s target was $5,000 so raising over $10,000 was a huge achievement!

A trained beauty therapist, Jayne’s work history includes working for the Telstra call centre and the Colorado Group. Since Jayne moved back to Tassie she has worked in the family business doing office work and most recently Jayne has spent some time in our very own call centre.

Jayne and her husband Scott are the proud parents of Joshua and Kayla and, when time permits, her hobbies are spending time with family and friends, shopping, reading, and holidaying.

Favourite food: Italian and Thai (anything I don’t have to cook myself is always great!)

Favourite author: Janet Evanovich

Favourite music: Love all music

Kate is happy to have any excuse for a party/celebration. Kate thrives on organising events. Kate’s husband- Anthony, works at Websters Trucks as a Diesel Technician, and was the 2010/2011 Agfest Chairman. They have two wonderful children: Victoria (4) and Claire (18 months) who keep them busy in what spare time they have!

Kate is the current Promotions & Media Director for Agfest Field Days and the current State President of Rural Youth – both voluntary positions. As well as Kate’s involvement with Agfest and Rural Youth, she is also the president of Deep South Events TAS which is a Rodeo Club. Kate was very quick to highlight that she is an organiser- not a competitor!

Favourite food: Coffee and lasagne (not necessarily together)

Favourite author: Tony Parsons(author of agricultural, namely sheep farming and kelpie dog breeding in the high country books)

Favourite music: Any music, particularly Cary Lewincamp

Page 11: Update Spring 2012

Research Opportunity – Melbourne University

MS Update Spring 2012 11

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Resilience, Coping Styles and Self-Efficacy in Relation to Depressive and Anxiety Symptoms in Those Newly Diagnosed with Multiple Sclerosis. Have you been diagnosed with MS in the last five years? We are interested in exploring how people respond when they face difficult or stressful events in their lives. There are many ways to try and deal with stress and these may influence levels of depression and anxiety in those newly diagnosed with multiple sclerosis. It is hoped that a greater understanding of these influences in newly diagnosed multiple sclerosis patients will lead to improved clinical approaches to enhance quality of life and successfully prevent and treat depressive and anxiety symptoms.

What is involved? This study is comprised of a series of online questionnaires and can be completed in the privacy of your own home at a time that is convenient for you. It will take approximately 30 minutes to complete. The questions involve:

• Basic demographic questions

• Questions about your level of disability

• Questions related to resilience, coping styles, self-efficacy, depression and anxiety

All information will be kept private and confidential. If you are interested in taking part in this study or would like further information, please contact the student researcher, Stephanie Tan-Kristanto at [email protected] or the staff supervisor, Dr Litza Kiropoulous at [email protected] or 03 9035 4063. Alternatively, please go to the webpage below:

https://melbpsych.us.qualtrics.com/SE/?SID=SV_5u1lj8EVNQISKoJ

Page 12: Update Spring 2012

MS Update Spring 201212

Follow us onlineFACEBOOK Search for The MS Society of Tasmania to find our page

YouTube www.youtube.com/mstasmania1

Head OfficeHobart 15 Princes Street Sandy Bay TAS 7005 Tel: 03 6220 1111

Northern Regional Office 18/2 Innocent Street Kings Meadows TAS 7250 Tel: 03 6343 1240

Freecall Statewide 1800 676 721

www.mstas.org.au

Main North & North-West Support Groups Enquiries: 6343 1240Launceston Support Group Meets the 2nd Thursday each month at the Branch Community Centre next door to the MS Society Office (opposite the bowling alley). 18/2 Innocent Street, Kings Meadows Time: 11am to 1pm

Ulverstone Support Group Meets the 4th Wednesday each month at the Ulverstone Surf Life Saving Club, Beach Road, Ulverstone (Lift access is available) Time: 11am to 2pm

Circular Head Support Group Meets the 1st Monday of each month at Circular Head Rural Health Services Inc 68 Emmett Street, Smithton Time: 7.30pm Contact Jenny on 6452 1594

Southern Support Groups Enquiries: 6220 1111Eastern Shore Support Group Meets the 2nd Friday each month at Bellerive Yacht Club (entrance to function room off lower car park). Time: 10.30 am to 12 noon

Glenorchy Support Group Meets the last Friday bi-monthly at Glenorchy Community Health Centre, Meeting Room 3 – 1st Floor, Terry Street, Glenorchy. Time: 10.30am – 12 noon

Note: Some days might change due to public holidays (please check your calendar).