MS Swimathon LauncestonMS Swimathon Launceston 2013 was held on Saturday 15 and Sunday 16 June at the Launceston Aquatic Centre.This year 120 participants of all ages raised just over $15,000. As not all of our offline donations taken on the day have been reflected in the online figure and donations are still being received, a final figure is as yet unknown.MS Swimathon Launceston has grown from the inaugural event in 2011 where 5 teams and over 70 participants raised $5,920, to 7 teams and 100 participants in 2012, to 2013 where 9 teams and over 120 participants raised over $15,000 gross.This year Riverside Aquatic had four teams participating and Latrobe Swimming Club joined Riverside Aquatic and South Esk clubs. We extend our thanks to all of the northern swimming clubs for their active participation and support.The teams who participated this year were:• Riverside Tri-Hards (previously Comic Relief)• Riverside Aquatic Juniors• Riverside Aquatic Seniors• Riverside Aquatic Tri-hard Two (a new team)• NHCMCRS/AMC (9 members this year up 2 from

last year)• Lemming Lapstars (ever youthful distance

swimmers)• South Esk Swimming Club• Tasmanian Pool Life Saving Team• And this year a third swimming club – Latrobe with

the Latrobe OwlsDenise and Ian James arrived on Sunday to show their support of everyone’s fundraising efforts on behalf of clients. Kirsty from the Northern Regional Office also attended in support of this event.

T A S M A N I A

MS Update Winter 2013

Inside this issueMS Swimathon Launceston 1

Get the Most Out of Life Program 3

Counselling Room 4

Multiple Steps Forward Update 5

Starring Staff Member – Lauren Haskell 6

MS Events Update 6

This years winners were:• Highest Fundraiser – Youth – Mitchell Fisher• Highest Fundraiser – Adult – Bradley Robinson• Highest Fundraising Team – Riverside Tri-Hards• Furthest Distance Swum – Riverside Aquatic

Seniors (93.4km)• Overall Winning Team – Riverside Tri-HardsOur thanks must go to the Launceston Aquatic Centre staff for the use of their facility and support.Our congratulations and sincere thanks go to the participants, team captains, Mums, Dads, guardians and MS Tasmania events staff without whom this event would not have been possible.

MS Update Winter 2013 1

MS Update Winter 20132

CEO’s Column

Where has the first half of the year gone? It seems that each month gets busier and the time flies.

The focus for MS Tasmania has been on the National Disability Insurance Scheme (NDIS) and working with the Neurological Alliance Group on providing submissions to the draft bill and the rules together with attending the Senate Select Committee hearing in Hobart. I am pleased that we made this a focus and that we can say that the various Tasmanian State based organisations have made a considerable contribution to what was proposed and made suggestions for improvement.

As you are aware the first phase of NDIS commences in Tasmania for the 15 -24 year old age group. MS Tasmania has a small number of clients in this age group and therefore if their needs meet the eligibility and priority criteria for the scheme they will be able to register to become a participant through DisabilityCare Australia should they choose to do so.

As part of the national NDIS campaign MS Australia has been lobbying for MS to be included as part of the early intervention aspect of the scheme. I am pleased to confirm that MS Australia has successfully achieved this major breakthrough and that MS is now included.

For the first time MS Tasmania had a stand at Agfest. It was a great success in terms of promoting Kiss Goodbye to MS and World MS Day. The red lips stickers were clearly evident throughout the large grounds. We had people asking where they could find them and coming specifically to obtain one so they could wear them. It then gave us the opportunity to speak to the people and to sell some of our merchandise. The staff from Launceston and Hobart manned the stand for the three days. It was a new experience for some but I know that they enjoyed the experience.

The State Government’s electricity concession came into effect on 1 July 2013 and is welcomed.

An information sheet is included with this newsletter, and the information is available from our Facebook page (MS Tasmania) and Website (www.mstas.org.au).

MS Tasmania, Hobart staff, celebrated World MS Day with a red theme, everything red for lunch. It was an enjoyable time together and it meant that the day had a focus for us along with the preparing and responding to media opportunities.

I wish you all well as you go into winter and look forward to catching up with you as I attend Support Group and Events around the State.

Dale Eastley

DisabilityCare Australia (National Disability Insurance Scheme) has a new website that aims to answer some questions from the community.

DisabilityCare Australia understands that everyone’s needs, preferences and aspirations are different. They provide information and referrals, support to access community services and activities, personal plans and supports over a lifetime.

http://www.disabilitycareaustralia.gov.au/

Get the Most Out of Life is a practical skills program for people with on going health conditions. The program provides participants with the tools to take charge of their long term health condition.

The six-week group program (2.5 hours a week) is designed to lessen the physical and mental health impact of chronic conditions, with topics including symptom management, healthy eating and managing emotions.

These sessions are based on the Standford Chronic Disease Self Management Program which is a group based program provided for people with one or more chronic conditions, such as chronic kidney disease, arthritis, diabetes, multiple sclerosis and other neurological conditions, respiratory disorders and cardiovascular disease. It is also suitable for supporters and carers.

The program is led by two leaders who have been trained to deliver the program. Leaders are volunteers and health workers who are often living with chronic conditions themselves. The program is run in small groups of about 10-15 people.

A gold coin donation goes to the provision of tea/coffee etc.

Programs are held throughout Tasmania, here are a few coming up:

• Clarence Integrated Care Centre: 18 June to 23 July - to register call Jane or Di on 6282 0350

• Launceston Integrated Care Centre: 19 June to 24 July - to register call Richard on 6336 2145 or Andrea on 6348 7815

• Flinders Island: 20 June to 25 July - to register call Fiona on 6359 2122

• Burnie: 23 July to 27 August - to register call Beth or Patricia on 6434 4130

• Hobart: 6 August to 10 September - to register call Jill on 6233 6778

So if you are interested in attending, please register as soon as possible on the numbers listed above

Accessing the MS ClinicReferrals from your GP are required to attend the MS Clinic. Our MS Society nurses attend the specialist MS Clinic which is part of the RHH Outpatients Clinics. The MS Clinic operates weekly with consultant neurologists and access to allied health staff.

The MS nurses can assist in scheduling appointments, and if required assist you to access other health providers via the clinic if required – such as occupational therapy and physiotherapy for example.

Our nurses can also provide you with information for the referral pathways to other Neurologists aside from the MS Clinic based in Hobart. If you do access other Neurologists, please be assured that our nurses will provide you with support and information with the ongoing management of your MS.

Please contact a member of client services staff if you have any queries in regards to clinical support.

For information and support phone:

Hobart office on 6220 1111Launceston office on 6343 1240

Get the Most Out of Life Program

MS Update Winter 2013 3

Father’s Day Raffle now on sale online at www. mstas.org.au. $23,000 in prizes! Tickets in a book of 10 for $25.00

New pastures for Mary LangdonMary left us on 25 June to join Royal Guide Dogs in a role similar to that which she has so capably held for us. We wish Mary well in her new role.Sharon Wilkinson has agreed to act as an interim leader of the Client Services Team.

MS Update Winter 20134

Counselling Room

My Outsides Don’t Match My Insides‘I want people to really ‘get’ what I’m going through. I want them to understand what it feels like to be so tired I can’t brush my teeth. I want my friends to see when I’ve had enough and that it’s time for them to go home. I want them to realise I can’t listen to several people talking at once and to music at the same time, without getting confused. Little kids and all their questions make me irritable; it’s just too much. Sometimes I even need for people to speak more softly or slowly. How do I explain this to others...?’From: MS and Your Feelings Allison Shadday, 2007 Hunter House CA.

Time and again, we who work in client services hear the words, “nobody really understands” In recent times many counselling sessions from around the state have been about this very issue…”I look so good, but I feel so bad” and the frustrations that accompany these words.Much of what occurs in MS is invisible to others. MS symptoms that are hard to see include fatigue, pain, cognitive problems like memory loss or having trouble solving problems, weakness, blurred vision, numbness, prickly or tingling sensations, heat sensitivity, dizziness, balance/coordination problems, and bladder, bowel or sexual problems.The following words, written by a person living with MS are taken from the booklet But You Look So Good by the National MS Society USA: Many people living with MS experience “invisible” (or not outwardly visible) MS symptoms. This can create a unique set of issues. Some people assume that you don’t really have a disease. This can undermine your confidence and your relationships, and discourage you from seeking treatment or help for problems. Add in living with all the other things that other people can’t see — your feelings of anger, uncertainty, frustration, and fear.

Still, people will look right at you and say, “But you look so good!”This response from others, no matter how well intended, can devalue the pain of living with MS, and can cause a person to discount his or her own feelings.In her book MS and Your Feelings, Allison Shadday, a social worker who was diagnosed with MS while working with people with MS, writes about a client who did a great job of

convincing everyone she was fine all the time, no matter how she was feeling. Based on appearances, she looked the picture of health but ‘her outsides didn’t match her insides’. She felt that because she didn’t appear to have outwardly serious symptoms, she wasn’t able to acknowledge her MS and had to keep silent. This can be a deeply demoralising experience. This client’s life had changed dramatically – her income had reduced, her marriage was strained, she was no longer able to play sports, her friendships had changed, her bladder changes meant that she was constantly up at night so she was more fatigued than ever – yet she discounted her symptoms, cutting off her ability to experience any natural feelings of anger, sadness or frustration. She effectively edited out her emotional life. Being able to speak openly about the hidden or apparent physical and emotional impact of living with MS is something that can happen within the MS counselling setting. Talking openly in a safe and confidential environment and working with the counsellor to develop techniques to express those hidden feelings is a good start to managing ‘ the insides’.Our counsellors are available for face to face or phone counselling at the following times: Sharon on Mondays and Tuesdays Darren on Thursdays and FridaysSuggested reading:MS and Your Feelings, Handling the Ups and Downs of Multiple Sclerosis, 2007 Allison Shadday, Hunter House CA.(available for loan from the MS Society, Hobart and Launceston)But You Look So Good Managing Specific Issues 2007 National MS Society USA (available online)

Multiple Steps Forward Update

Who are Multiple Steps Forward?Multiple Steps Forward (MSF) is a representative group of people living with MS, or carers of people with MS who work in a voluntary capacity, dedicated to advancing the wellbeing of Tasmanians with MS.Join by email or come along to our meetings on the first Friday of every month at the MS Society of Tasmania in Sandy Bay. For those in the North and North-West, we also meet once a year in Campbell Town. Come along and share all your concerns, hopes and ideas. Join old and new friends for lunch.Email: gillrhoda@gmail.comPhone: 03 6278 7334Mobile: 0414 402 091

Our small group have been working away at determining and advancing efforts on your behalf to improve conditions for people living with MS, and their carers. We would love to hear or see more of you. You are welcome to join us on the first Friday of the month at the MS Office in Hobart, or email us on gillrhoda@gmail.com or phone for a chat on 62787334.

• Access to Councils: To ensure that we have a voice in making sure that councils are responsive to our needs, we have made some headway on having an MS person on local councils’ Community Access Group. Lynda Hanlon has been our representative on the Hobart City Council for some time and regularly reports to the Eastern Shore Support Group; Sean O’Moore as a representative at Glenorchy Council, has been spreading the information on pertinent activities and information through our email list; Shirley Anderson at Clarence Council has also begun to report. Julie Garwood has offered to be the representative on the Kingborough Council, and we will add her reports as they eventuate. Huon Valley does not have a vacancy on their committee at this moment, but we will keep a watching brief. People are encouraged to try to have a voice on councils’ Community Access Groups. Such actions not only empower us but they also provide useful information and enable us to improve conditions.

• DisabiltyCare Australia (formerly NDIS): As you will all know the NDIS has started and now has the support in law of the Australian Government. Seminars have been and will continue to be run on disseminating information and ensuring people affected have a voice.

• I repeat our plea from February when we took on board two initiatives. The success depends on input from our group but also from everyone living with

MS, their carers and those interested. Again we seek any ideas for fundraising that people might have or wish to organise. Two years ago the Eastern Shore Support Group ran a very successful Readathon for adult’s effort raising over a $1000. Any other fundraising ideas would be gratefully accepted. Ring 62787334 or send an email to gillrhoda@gmail.com.

MS Tasmania note...Having identified a gap with Community Fundraising, since the submission of this article, Lauren Haskell, who is being introduced over the page, has joined MS Tasmania. Part of Lauren’s role is to coordinate and liaise with ‘Community Fundraising’ so please contact Lauren with your fundraising ideas. For information on Readathon 2013 see the Events update further in.

• We would also urge people to become a member of the MS Society. Membership is $33.00 including GST. Membership forms are available on request from the MS Society. Unless you enrol you are not a member and therefore are simply a passive recipient of services. We would encourage people to become involved either through membership or fundraising or both.

• After an initial attempt in 2010, to secure from DIER a commitment to produce a booklet on driving for the disabled failed, we will once again broach them with this idea. We will keep you informed.

• Finally, we say to you, be proactive, be involved and use the MS community for friendship and stimulus.

Rhoda Gill Spokesperson, MSF

MS Update Winter 2013 5

MS Update Winter 20136

Starring Staff Member – Lauren HaskellWe warmly welcome Lauren Haskell to the team at MS Tasmania. Lauren joined us on the 3rd of June as our Corporate Receptionist & Event Management Assistant.While Lauren’s focus will primarily be assisting with events management and front of house, Lauren has responsibility for coordinating and liaising with people about community fundraising. What is community fundraising? Simply put, anyone in the community who wants to fundraise on behalf of MS Tasmania outside of our major events is a community fundraiser.So who is Lauren? Lauren tells us that she has lived in Launceston most of her life. Three months ago Lauren decided to head south across the great Tasmanian divide, and moved to Hobart to see what new and exciting challenges and experiences were out there. Previous to joining us Lauren worked for the Commonwealth Bank of Australia. While Lauren thoroughly enjoyed her time with the CBA, she is really looking forward to getting to know new people and experience new adventures with MS Tasmania. Trust me, we will keep her busy!In her spare time Lauren likes to eat food, which means cooking! While Lauren loves cooking, she will try different restaurants and perhaps one day will become a food critic. Lauren likes to travel and went to America last year and had the time of her life. Lauren is currently deciding where in the world to go next. Favourite food – everything!! I love eating all different kinds of food and in my free time I hope to start a blog writing about the food I eat at restaurants and cook at home. Favourite music – dance/pop however I am enjoying listening to Eric Clapton at the moment. Favourite movie – Factory Girl – movie about Eadie Sedgwick and Andy Warhol.So, the next time you ring, if Lauren answers the phone please introduce yourself and make her feel welcome.

MS Events Update SwimathonSOUTHERN: 3 August 2013 @ Hobart Aquatic CentreSplash and dive into the 2013 MS Swimathon’s! 24 hours of constant swimming within your team, whilst fundraising and promoting awareness of Multiple Sclerosis. A fun filled, energy driven event, sure to bring a splash to your social calendar!For more information, visit our website www.mstas.org.au or HOBART fundraising page http://www.everydayhero.com.au/event/msswimathon

Mud Dash 2013SOUTHERN: 17th August 2013 @ KellevieNORTHERN: 12th October 2013 @ Fulton Park, ForthAge Group: all agesMS Mud Dash 2012 was a muddy event, so muddy we had to share the fun with Southern Tasmania by introducing a MS Mud Dash to the South! Those that participated last year, be prepared for a longer, muddier, course and more obstacles to the track as well as some other initiatives to ensure a wonderful day had by all! Who is afraid of a little mud???.....Registration costs – Adults - $40 Youth 12 – 16 - $20 Children under 12 free (no free teeshirt) Teams of 10 - $350 Must register to get a free tshirt!!For more information visit our website (link has changed) http://www.mstas.org.au/ms-events/ms-mud-dash/

Thank you to everyone who participated and contributed to this inaugural event. This event raised $4,545.35.

MS Update Autumn 2013

MS Readathon 2013 is underway, focusing on reading for the cause and engaging the greater audience evolving this event into something for everyone.This year we have quite a few new introductions to MS Readathon, starting with age limits. Reading isn’t just for children. We welcome all adults to participate as well. Gift vouchers, in nominated denominations, are offered as rewards. This year to ensure all participants enjoy the revamped MS Readathon, we have introduced challenges along the way. These challenges will utilise artistic talent, imagination, knowledge, and encourage participation. Also, I am excited to introduce you to “Roger the Reading Rabbit”. Roger is here to keep all little bunny followers hopping along in MS Readathon and have some fun along the way. Upon registering you receive a welcome letter, receipt book and a book mark! Then whilst reading, you will receive challenges, fundraising tips, newsletters and exciting stories along the journey of MS Readathon 2013. Registration is open until August 3rd. Participants then fundraise, promote and read up until 30th August. Presentation of rewards will be scheduled in conjunction with school terms. This year we encourage individuals participating to join their class (if student) or company. There are prizes for the Highest Fundraising Individual, School & Workplace. We are introducing the MS Readathon “Class Challenge”, where classes register their students. The class must have 50% of their enrolled students register and each student registered is asked to achieve a $10 fundraising total. If these criteria are met, the class will be in the draw to win an iPad Mini. As well as the MS Readathon “Class Challenge”, schools are encouraged to participate this year. There are 5 iPad Minis up for grabs for all schools that accomplish 10% of their total enrolled students participating in MS Readathon and where each MS Readathon registered student achieves a fundraising minimum of $10. So, students state your school name when registering!

Read-a-long Day is part of Readathon, and this year focuses on working together; reading, fundraising and creating awareness for MS. Registered participants will be encouraged to organise “Dress RED 4 MS” days at their school or workplace, morning or afternoon teas, or anything you can think of! The sky is the limit as to the creative ideas and we can help you to promote your events. If you have any suggestions, then please let us know! Why not create an in house corporate challenge, in your workplace or school, all whilst promoting and raising funds for MS!Remember reading is an everyday action, novels, comics, newspaper, business documents, e-books the works! This is something you can simply register to participate in, and costs nothing to get involved.This year we aim to actively attend schools and workplaces to offer greater interaction with participants. All participants receive a certificate as well as the “thank you” bookmark! For all printed collateral and enquiries contact Kate or Lauren on readathon@mstas.org.au or 6220 1111.http://www.everydayhero.com.au/event/MSReadathonTasmaniaKate Coad Events Management Coordinator

7

I wou

ld like

to he

lp the

MS Soc

iety r

educ

e cos

ts an

d aid

the en

viron

ment.

Please

send

me t

he ne

wslette

r via

email:

Email ad

dress

____

____

____

____

____

____

____

____

____

____

____

____

____

____

____

____

___

Have y

ou ch

ange

d you

r add

ress?

Please

remem

ber to

let u

s kno

w! Hob

art 03

6220

1111

or La

unce

ston 0

3 634

3 124

0 or c

ut

out, c

omple

te an

d retu

rn the

se de

tails t

o us a

t Loc

ked B

ag 4,

Sandy

Bay, TA

S 7006

Name _

____

____

____

____

____

____

____

____

____

____

____

____

____

_

Addres

s, Sub

urb an

d Pos

t Cod

e __

____

____

____

____

____

____

_

____

____

____

____

____

____

____

____

____

____

____

___

____

____

____

____

____

____

____

____

____

____

__

____

____

____

____

____

____

____

____

____

My new

phon

e num

ber is

:

____

____

____

____

____

__

MS Update Winter 20138

Want to connect with us? Head to our website – www.mstas.org.au for the latest research news, community fundraising ideas, events and raffle information. Individual community fundraising and event pages are advertised on our Facebook pages

INSTAGRAM

Follow us on instagram - share your pics!! Look for “mstasmania”

FACEBOOK

/MSTasmania or /MSEventsTasmania

YouTube

www.youtube.com/mstasmania1

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

MS After Hours Open Meets: bi-monthly from March, first Thursday Venue: Magnolia 73 Café 73 Main Rd, Moonah Time: 5.30pm - 7pm Cost: $10 per person for light food and hot drinks Must RSVP before attending for numbers Contact: Sharon: sharon.wilkinson@mstas.org.au or : Darren: darren.radley@mstas.org.au

MS After Hours FOR PARTNERS Meets: bi-monthly from February first Monday Venue: MS Society 15 Princes St 1st floor (use lift) Counselling Room Time: 5.30 – 7pm Please bring a little food to share with the group RSVP: Sharon: sharon.wilkinson@mstas.org.au

Men Living with MS Southern Tasmania Support Group Meets: Monthly, last Thursday of the month Venue: MS Society Sandy Bay office and selected venues for lunch Time: 11am – 12.30pm (office), 12pm – 2pm (lunch) Contact: Darren: darren.radley@mstas.org.au

Note: Some days might change due to public holidays. To confirm dates and see other North and North West support groups, please check your support group calendar online at www.mstas.org.au (under useful links, bottom of the page)

T A S M A N I A

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 aboutus@mstas.org.au