Autumn 2013 Explaining MS to children Art Therapy Every Day ...

The Official Magazine of MSWAwww.mswa.org.auAutumn 2013Explaining MS to childrenArt TherapyEvery Day HeroesOT ServicesLatest ResearchTrudi’s Story

ulletinThe Multiple SclerosisSociety of WA (Inc.)Telephone (08) 9365 4888Fax (08) 9451 4453Freecall 1800 287 367Member Services DirectoryGeneral Manager, Member ServicesSue Shapland 9365 4840Manager NursingLou Hatter 9365 4809Hospital Liaison Nurse(S.C.G.H.) 9346 3333Pager 3333Community Nurses9365 4812, 9365 4838, 9365 48709387 4846 or 9365 4888PhysiotherapyManager, Marilyn Sylvester 9365 4834Southside - Friday 9592 9202Occupational Therapy DepartmentManager, Sandra Wallace 9365 4804Heather Mearns 9365 4894Robyn Loxley (Assistive Technology)9365 4861Ilissa Liew 9365 4832Verity Defries 9365 4833Coordinator for Camps & Recreation9365 4843Counselling & Social Welfare Dept.Manager Counselling, Lisa Papas9365 4836Support Counsellors 9365 48089365 4811Peer Support Program 9365 4808Welfare Officers & Funding Locators9365 4889, 9365 4835Health Promotion Officer 9365 4824Wangara OfficeUnit 5/2 Prindiville Drive 9408 07729409 8920Bunbury Office9 Ramsay Street 9791 2472Outreach GroupsWilson Outreach (Mon-Thurs) 9365 48309365 4888Beechboro Lodge (Mon, Fri) 9377 7800Southside Outreach (Fri) 9592 9202Albany Outreach (Fri) 9841 6651Margaret Doody Respite HouseManager, Chris Rush 9385 9574Fern RiverManager, Liz Stewart 9356 2747Hamilton HillManager, Jayne O’Sullivan 9331 5780Treendale GardensManager, Linda Kidd 9725 9209Individual OptionsManager Community Care ProgramsGail Palmer 9416 4508(Carlisle Office)Editorial CommitteeRos Harman (Editor),Marcus Stafford(CEO), David Bugden,Greg Brotherson, Sue Shapland,Sandra Wallace, Narelle Taylor,Leonie Wellington, Nicolette Madry,Taryn Mokrzycki and Dawn Burke.The Editor welcomes unsolicitedsubmissions. All articles are subjectto a reviewing process. The viewsexpressed are those of the Authors anddo not necessarily reflect the view ofthe Society’s staff, advisors, Directors orofficers.your society3 Editorial4 From the CEO’s Desk5 Member Services Report9 Events Calendar14 Art Therapy22 About Member Services24 Occupational Therapyinformation for living6 Research Roundup11 Assistive Technology27 Sexuality Service27 Sleep Facts27 Manage Your Energyhealth & wellbeing15 Pregnancy and MS16 Explaining Chronic Illnessto Children18 Life Goes On19 Do People Judge Youby Your Appearance?20 Health PromotionMS community8 Every Day Heroes8 Bunbury Swim10 Enjoying the Journey12 MS: The White Man’s Disease28 Decisions, Decisions, Decisions....Trudi’s Story.29 Positive Reinforcement30 OutreachinsidePage 8 - Everyday HeroesPage 8 - Bunbury SwimPage 10 - Enjoying the JourneyPage 28 - Trudi’s Storycontact usIf you would like to comment on anything you read in this Bulletin please emailbulletin@mswa.org.au or write to MSWA, Locked Bag 2, Bentley DC WA 6983.The Bulletin can also be viewed at www.mswa.org.au/newsI had a life changing event recently.In January, my 21 year old daughter wentto study at University on the other side ofAustralia. My baby’s left home!Don’t get me wrong: I am so very, very happy that she hassucceeded in achieving this next step towards her life goal,and I am so proud of her. But even though I had startedpreparing myself for the day she would leave ever sinceshe was born, a part of me was devastated when that daycame. I cried for five days when she got the news - in secret,of course.As far as life changing events go this one is mostly positive.While I miss my daughter terribly it is reassuring to bein touch frequently and to know that she is having awonderful time. Really, apart from preparing meals for oneinstead of two, the change for me has not been nearly asdramatic as I initially expected. And there is an upside - mydining room table stays tidy now.I’ve had life changing events before that have had a muchgreater impact. On my sixteenth birthday, my father diedafter fighting a long battle with cancer. That was reallytough. Also, not long after turning 40, I was divorced -another unpleasant time that led to much change. Each year winter brings with it the risk of flu. Fluvaccinations will soon be offered for those at risk; theyoung, the elderly and those with existing illnesses.We are often asked by Members if they should have thevaccination or not.Our medical advisor Professor W Carroll offers thefollowing comment:"There is no evidence that these vaccinations makeMS worse or cause a relapse. Should a relapse occur,around the time of 'flu' vaccination it is thought tobe a coincidental event. Occasionally people with MShaving vaccinations can have a brief exacerbation ofEDITORIALBy Ros HarmanWithout a doubt though, the biggest upheaval I haveexperienced is being diagnosed with Multiple Sclerosisjust after my 26th birthday. Every one of the Members ofMSWA knows what a huge life changing event that was.Events like the ones I have experienced are often traumaticand have repercussions that affect the rest of one’s life. If Ihad not had friends to help me through those tough timesI am not sure how I would have managed but I have beenvery fortunate to be surrounded by a loving family andvery good friends. In particular, I am glad to have had thesupport of the MS Society of WA since I joined in 1988.The Society has been a very good friend to me and in turn,the people of Western Australia have been good friends tothe Society. Reading about our recent fundraising swimsin Bunbury and Rottnest has impressed on me just howgenerous our supporters are as they donate their money,time and often their physical energy. My life, and the livesof our Members, would be so much tougher without thefriendship these swimmers and their sponsors offer theSociety.My daughter’s leaving has changed my life a little bit.Having MS changed my life a lot; but having friends hasmade it easier to keep moving forward. Thank you to allthose people who, through their support of MSWA, are myfriends.existing MS symptoms; but this is not worsening ofthe MS. People with MS are advised to discuss thiswith their treating neurologist or physician as soon aspossible as it is essential to have the vaccination earlierrather than later to reduce the risk of contracting theflu".Don’t forget that your GP and / or neurologist canadvise you on these important health matters.For information regarding some other vaccinations,which may be require additional advice relating to someof the disease modifying therapies, we recommendyou discuss this with your neurologist.MS Society Western Australia Summer 2012 Summer 2012MS Society Western Australia

RESEARCHRound up of Research andItems of InterestRESEARCHSue Shapland RN, BNPrevANZ; a world-first clinical trial is underway testing ifvitamin D supplements can prevent MS in those at risk ofdeveloping the disease. The randomised, double blind,placebo-controlled trial will focus on the possibility ofusing vitamin D supplements to prevent a diagnosis ofMS following a person’s presentation with a first episodeof symptoms – people with CIS or clinically isolatedsyndrome. It will also test appropriate dosage levels andsafety. The trial will enroll 180 people across 20 trial sites inAustralia and NZ.Read more at http://www.msra.org.au/prevanz MSWA isproud to support this project.Sativex This medicinal cannabis-based mouth spray hasrecently been registered for use for people with MS withmuscle spasticity by the Australian Therapeutic GoodsAdministration (TGA). The results of two clinical trialswere published showing that cannabis based medicationsare effective in reducing the muscle pain and stiffnessassociated with MS.Read more at: http://www.msra.org.au/sativex-registeredtga-not-yet-availableNew Treatments in the Pipeline:BG-12; phase III trial of this oral therapy in 1430 peoplewith relapsing-remitting MS – tested at two or three timesa day against placebo over two years – achieved statisticalsignificance on the primary endpoint of reducing averageannual relapses by 44 to 51% over placebo. Both dosesof BG-12 reduced disease activity on MRI. Disabilityprogression was not reduced significantly by BG-12. Themost common adverse events in the BG-12 groups wereflushing and gastrointestinal events.!Alemtuzumab/LEMTRADAA monoclonal antibody that selectively targets a proteinabundant on T and B cells. Treatment results in the depletionof circulating T and B cells thought to be responsible forthe damaging inflammatory process in MS. Alemtuzumabhas minimal impact on other immune cells. The acute antiinflammatoryeffect is immediately followed by the onsetof a distinctive pattern of T and B cell repopulation thatcontinues over time, rebalancing the immune system in away that potentially reduces MS disease activity.This treatment is given as a 5 day course intra-venouslythen a 3 day course one year later; there are potentiallysome significant side effects including thyroid diseasewhich require monitoring. It is expected that this productmay be available in Australia in 2014.anti-LINGO-1Blocking the nervous system molecule LINGO-1 increasesmyelin repair in mice, so the next step was to evaluate safetyin humans. In the first human trial of this approach, a teamadministered test doses to 64 healthy adult volunteersand 42 people with relapsing or secondary-progressiveMS. There were no serious adverse events; headache wasthe most frequently adverse event reported. The resultssupported advancing this myelin repair strategy into aphase II clinical trial.Having MS and starting a familyDr Gary Fulcher, Senior Clinical Psychologist, MS AustraliaHaving a child is a lifelong commitment and there aremany factors that couples need to consider. In choosingto have a family couples want to feel confident that theycan support their child — physically, emotionally andfinancially. Thinking ahead is an important part of decidingto become parents, particularly for people living with MS.This article provides information about some of the issuesthat most concern people with MS about starting a family.Read more: http://www.msif.org/en/life_with_ms/family_friends_and_carers/having_ms_and_st.htmlEffectiveness of Energy-Conservation treatment inreducing fatigue in Multiple Sclerosis: a systematicreview and meta-analysis.Blikman LJ, Huisstede BM, Kooijmans H, Stam HJ, BussmannJB, van Meeteren J.Systematic review of the effects of Energy-Conservation-Management (ECM)-treatment for fatigue in MS. The resultsprovided evidence that, in the short-term, ECM-treatmentcan be more effective than no treatment in reducing theimpact of fatigue and in improving three Quality of lifescales: role physical, social function and mental health infatigued MS patients. More trials that also study long-termresults are needed.Read more http://www.ncbi.nlm.nih.gov/pubmed/23399455Heat sensitive persons with multiple sclerosisare more tolerant to resistance exercise than toendurance exercise.Authors: Skjerbæk AG, Møller AB, Jensen EResults showed that core temperature, subjectivesymptom intensity and total number of symptomsincreased significantly more during endurance exercisethan resistance exercise.Based on the results of this small study, heat sensitivepatients with MS tolerate resistance exercise better thanendurance exercise.Read more at: http://www.msif.org/en/research/ms_research_news/heat_sensitive_p.htmlCan we vaccinate against the Epstein-Barr Virus?(EBV; causes glandular fever)Several MSRA funded research projects are looking atthe possible causal link of EBV, including one here in WA,supported by MSWA funding, with Prof Allan Kermode.Peter Csurhes, research scientist with the University ofQueensland, Centre of Clinical Research, says: “Down thetrack, perhaps there may be vaccinations against the virusor ways drugs, which can control the way that the virusreplicates, may be very helpful for people with MS andpossibly even other autoimmune diseases”.Read more: http://www.msra.org.au/can-we-vaccinateagainst-epstein-barr-virus-ebvCLIMB 1103 STEPS TO THE TOP OF CENTRAL PARKWith every step, you can help thousands ofWestern Australians living with MS. Call6454 3131 or register at StepUpForMS.org.auPeter Csurhes - Research ScientistSUNDAY 21ST APRIL 2013MS Society Western Australia Summer 2012 Summer 2012MS Society Western Australia

Everyday Heroes!On Saturday, 23 February 2013, Terri McFarland, Cathrina Read, David Scott and Greg Young entered as a teamto compete in the HBF Rottnest Channel Swim. It was a challenging day, in rough conditions, not to mentionthat it was only 13C at the starting line.Team “Just Waving, Not Drowning” were underway on their19.7km swim quickly and made excellent time completingthe first 10km in 3 hours. Unfortunately, without realising,the boat travelling with the swimmers started to take onwater. Thanks to the tireless efforts of Skipper Barry andhis deckhand John, the team were able to reach the 17kmmark before it became evident that they weredone for the day. The hole was plugged butafter a tense 30 minutes of trying to ensurethe boat actually stayed afloat it was timeto pick up the swimmer and paddler in thewater and head to Rottnest.Whilst the end was so close and the resultan obvious heartbreak for the team, we atthe Multiple Sclerosis Society of WesternAustralia are super-proud of the team andtheir efforts, not just on the day but also forraising much-needed funds for people livingwith MS.The team’s initial fundraising goal was$2,000 but after months of hard training,and campaigning, they raised a whopping$6,925! Thank you team Just Waving, NotNinety-five swimmers took to the lanes of theBunbury Aquatic Centre for the inaugural Swim forMS in the South West on Sunday, 24 February 2013.And, what a ripper it was!“Not only was the fundraising effort amazing, theatmosphere and energy at the pool was fantastic!” saysJenny Saibu, Senior Events Coordinator at MSWA.A total of 4,836 laps were swum over the 10 hour period.Sam’s Swimmers, a team of 6, was the team with the mostlaps swum, completing 577 laps. Spot prizes were awardedto Adele Durell from the team Violets, who swam a massive134 laps without stopping and, Marie Harris, an MSWAMember, who swam 43 laps and was at the event all day.Great work Adele and Marie!But most impressive were the fundraising efforts of thepeople of Bunbury, raising an amazing $55,864 to makethis Swim for MS the biggest yet! Thank you to all who tookpart in the swim and to all who donated. We look forwardto seeing you all again next year!Drowning - we look forward to watching you take part inthe swim again next year.If you’d like to check out the team’s fundraising page andfind out more about their efforts, visit everydayhero.com.au/not_drowning_just_wavingBunbury swam for MS!Looking forDate Event DetailsSun 21 April 2013 Enerflex Step Up for MS Run, walk or crawl 1,103 stairs - that’s 53 flights- up one of Perth’s tallest and most iconicbuildings, Central Park and enjoy the amazingview from the top!.Wed 29 May 2013 World MS Day Our annual Street Appeal coincides with WorldMS Day and takes place in the Perth CBD. There’llbe loads of fun activities happening throughoutthe day so come along and help us raise fundsto support people living with MS.Sun 9 June 2013 Swim for MS Joondalup Aquatic CentreThis is a 10-hour swim with teams competingin and out of the pool to be the overall winner.Points are awarded for dollars raised and lapsswum so you don’t need to be the fastest towin.Fri 21 – Sun 23 June 2013 EveryWoman Expo As the partnered charity for this year’sEveryWoman Expo, the MS Society will be at theIGA Celebrity kitchen, cooking up a storm.Thur 1 August 2013 Dinner Auction Get dressed up and bid on some fabulousitems, from one-off experiences to sportingmemorabilia and much more.Tues 20 – Thur 22 August2013something to do?The Multiple Sclerosis Society of Western Australia holds many events over the year. From sporting events to theatreproductions, we really do have something for everyone!So join us in 2013! Whether you want to help to fundraise, have fun with colleagues, friends and family, make a sportingteam, or volunteer some of your time, our events are not to be missed!Stand Up to MSComedy GalaSeptember 2013 (date TBC) Swim for MS Melville Aquatic CentreWith non–stop laughs from local and interstatecomedians, a great night is sure to be had byall.Grab your mates and join the fun! Last year, thisevent raised a huge $26,000 and an amazing4,673 laps were swum.Sun 20 October 2013 Hatch Ocean Ride for MS Along our beautiful coastline from Fremantle toHillarys, riders are given the option of a 10kmfamily-friendly ride, 30km ride, 50km ride, or amore challenging 70km team ride!For more details on all MSWA upcoming events and other fundraising programs please visit mswa.org.auMS Society Western Australia Summer 2012 Summer 2012MS Society Western Australia

ENJOYING THE JOURNEYASSISTIVE TECHNOLOGYIt is always good to have a goal to try to achieve. This yearI had set my goal to attempt a solo Rottnest Channel Swim– 19.7km. Unfortunately, Mother Nature got the betterof me and I had to withdraw at the 16km buoy. I wassuffering from Pulmonary Edema (water in the lungs) andhypothermia.When I was diagnosed with MS over 23 years ago, I hadto give up land based sports and so I turned to swimminginstead. Over the years swimming has helped to maintainmy body and it has been great psychologically. In 2009I joined a team (four swimmers) at one week’s notice toswim the channel and we did so in 8hrs 45mins. Thefollowing year I was in a team again and we did about thesame time in rougher conditions then the year before.Next step was to take it one higher; do a duo. This involvesa lot more training then a team and my duo partner andI successfully reached the island in 6hr 41mins, with stillenergy to spare.Next was to try a solo; it wasn’t a decision made lightly. Ithought it was the best time for my body as it had stabilisedover the last 12 months and hadn’t had too much extratrouble from it. Family life was good; my time was moremy own.The journey then began. Gradually you begin to increase thenumber of kms you swim a week. This began around July...I was swimming 10-12kms per week. August arrives andagain you increase it more by 12kms per week. September/October 16kms per week; November/December 18-20kms.When doing a solo you have to do a 10km qualifying swimwhich I did in December at Champion Lakes, which is aman-made lake with little buoyancy and I had to completethe swim within 4hrs. I was successful in 3hrs 32mins.After the swim my legs were extremely wobbly so I hadto ask the Rottnest Channel Office if I would be able tohave assistance when I arrived at the Island and that wasapproved as you cannot touch anything or anyone overthe 19.7kms.In January my back started to play up very badly. Medicaladvice was for me to stop swimming for about 4 weeks.I told them it wasn’t going to happen and that theyjust had to do the work to get me to be ready to swimon the 23rd February. Subsequently my training regimehad to be changed. I still needed to be doing the kms soonce I had established this it was then more swimmingand averaging about 25 - 28kms per week. This regimecontinued until 2 weeks before the swim when I began totaper for the event.The day arrived and it was one of the coldest days we havehad in February; a strong southerly has already arrived at5.45am, (we all wish for a strong easterly) and we wereswimming for the first 10-12kms in 2-4m swells. I wasswimming well and had reached the 10km mark in 3hrs50mins. The wind dropped but it then made the conditionseven harder to swim in, the waves were about 60cm – 1mhigh and breaking over your head so it was difficult totake a breath without taking in water or spray. I also wasexperiencing an MS bladder that had decided that it wasn’tgoing to work in the ocean. At the 15km mark was whenby Kay Jonesthe trouble started; it all happened very quickly – I washaving trouble breathing without being able to take waterinto my mouth and trying desperately not to swallow it,and when the water enters the lungs, the oxygen cannotgo through the body efficiently and you then are losingbody heat. Hypothermia was already setting in and thisthen just exacerbated it. I had tried all the motivationalsayings and tools I had to try to keep going – the islandlooked very close – 4kms away and knowing that at the16-18km mark you hit a strong northerly current which cantake hours to get through and that to spent two more hoursin the water wasn’t a sensible way to go. I had to considerthe ramifications of what could happen if I continued: howwould my body recover? Is this setting a good example tomy daughter (18yrs old) that you cannot stop? How willmy husband feel as he travels away constantly and whatworry would that cause him and also the dynamics of howclose a family we are? Rationality came through with thethought ”it is only a swim” - I was beaten and then swamto the boat. I had been in the water for 6hrs 35mins. Mysupport crew were watching me very closely and I am gladthat I made that decision myself to stop and not them.On the boat I needed to share the love of the ocean waterand proceeded to vomit and couldn’t stop for quite sometime. I received medical attention on arrival at the islandand underwent an ECG and warm blankets to warmback up again, and still my bladder didn’t want to work.eventually after 8 or more hours it decided to becomea working member of my body. When I was fit to leaveI returned back to the boat and came back to Fremantleand home sweet home.I was extremely disappointed when I arrived home. I hadbeen keeping a diary of the number of kms I had beenswimming each week since August and I was then able totally it off at 518kms.So, sometimes we don’t reach the ultimate goal weset out to achieve but the journey can be exciting andextremely rewarding and I hope that what I did givesother people encouragement that you can try to reachthe stars. If you get hiccups along the way, stop, reassess,but keep on trying.2014 is a duo with my daughter and then who knows – willI try a solo again in 2015? We can never say never!!!MSWA Receives InternetCommunication Technology GrantThe Disability Services Commission recently advised thesector of a grant round being managed by the IndependentLiving Centre that was available for people in supportedaccommodation to allow them to maintain and / or extendtheir contact with the outside world; to facilitate ongoingcommunication with family and friends.Robyn Loxley, our Occupational Therapist specialisingin Assistive Technology solutions, successfully appliedfor $20,000, to set up our Treendale Gardens facility withcomputers and appropriate telephone access for theresidents in their units.This is a very exciting project which will be completedwithin 12months. Each of the residents will be assessed forthe appropriate adapted computer and telephone access,and where necessary further funding grants will beaccessed to provide any specific equipment any individualmay require.Several of the residents have never been able to accesscomputers or phones previously so this will be a lifechanging experience for them as they learn and developnew skills; some they may not have thought possible.Internet ProvidersPeople use the internet for many reasons. Whether it isfor work, to play online games, or to keep in contact withfriends and family, the internet is a part of everyday lifefor many people. For those looking for a cheaper internetservice provider, read on…TADWA have advised that Westnet are able to provide avery competitive rate and great service.• You can find out more from TADWA here:www.tadwa.org.au/content/25/Internet-Services.aspx• You can find out more about the plans Westnetprovides here: www.westnet.com.auFor people aged over 55, ONE Seniors are a serviceprovider able to offer cheap internet options.• You can find out more about ONE Seniors here:www.oneseniors.com.auAssitive TechnologyMSWA Web Chat Forums 2013Connecting experts, tips and people living with MSEach month the Health team of MSWA host a web forumfor Members of the Society. Anyone is welcome to join into ask questions, comment and post tips on the topic ofthe month. Times may change so stay tuned each monthwith an email reminder. Even if you can’t make it on theday, feel free to look over the transcript from the forumon www.mswa.org.au/live-chat.html.Date19th February19th March16th April21st May18th June16th July20th August17th September15th October19th NovemberTopics for 2013:TopicSymptom management – tips andstrategiesThinking and memory changes withMSExercise and MSAsk a NeurologistManaging stress and buildingresilienceNutrition, supplements andcomplementary therapies for MSRelationships, family and MSHow to get a good night’s sleepMS Research & treatment updateFatigue and heat management forMSMS Society Western Australia 10 Summer 2012 Summer 201211MS Society Western Australia

MS ‘The White Man’s Disease’:but “I am part of the new picture.”Priya Sankaran (Reporter’s Notebook)Priya Sankaran is a thirty-three year old female Canadiancitizen of Indian decent, who in 2007 was a journalist in thetelevision newsroom of the CBC's Toronto BroadcastingCentre. For Priya that job “was a career high”, whenafter falling at work she was admitted to Emergency ina Toronto hospital. It was here that Priya received thecrushing diagnosis of Multiple Sclerosis. What follows is anedited version of her awakening published by the multipleSclerosis International Federation beta test website (15February 2013).Priya discovers that between 55,000 to 75,000 Canadianslive with multiple sclerosis, that the disease is three timesmore likely to occur in women than men, and is seen mostcommonly in people of northern European background,i.e. Caucasians. But “why me”? Priya asks. Her genes areIndian and both her mother and father's familial lines canbe traced back to small villages at the very southern tip ofthe country.During her diagnosis, however, Priya was asked “Wherewere you born and when did your family immigrate toCanada?” She was told that one theory suggested thatif a child older than three immigrates from a place of lowrisk, such as India, to a place of high risk, such as Canada,the child will retain immunity to the disease commonto the parent's country of origin. Priya’s family had firstimmigrated to Germany and Priya was born in Hamburg,but wondered if she would have MS if she had notimmigrated at all? She said that her “non-white friends,even my childhood paediatrician who was Indo-Canadian,wondered how it was I'd come down with what manyconsidered to be a 'White Man's Disease'.”In 2011 Priya returned to India to undergo LiberationTherapy, a surgical treatment for multiple sclerosisdeveloped by vascular surgeon, Paulo Zamboni. Thehypothesis is that people with MS have blocked neck veins,and that when unblocked will alleviate the symptoms ofMS. Priya seized upon this glimmer of hope, and althoughneurologists were highly sceptical, to her the idea madesense. A Doppler ultrasound scan at a clinic in Barrie,Ontario, showed that Priya’s veins were blocked.As Liberation Therapy was unproven, controversial andnot sanctioned in Canada, Priya looked elsewhere. Bychance it turned out that Venoplasty surgery was offeredat a premier hospital in Chennai, where Priya’s extendedfamily lived.Before leaving for India, Priya had a second scan, which alsosuggested her veins were blocked. Priya also enrolled inthe Barrie doctor’s study of patients to assess the safety ofthe procedure. This required another ultrasound (“paid outof my pocket, as Ontario’s health insurance system wouldnot pay for a scan to support an unproven technique for acondition that may or may not have anything to do withmultiple sclerosis). Although there had be deaths aftersurgery, Priya wasn’t deterred.Priya tells us “But I didwant to know for myselfif the procedure couldwork for me. Enrolling inthe Barrie doctor’s study,even if I had to pay out ofpocket, ensured I wouldreceive some sort of postoperativecare. I kept myfamily doctor informedof what I planned to doin India. She knew verylittle about MS or theprocedure but read up on all of it. The Indian vascularsurgeon I met with required his own scans. So in Chennai, Iunderwent a venogram; that’s an X-ray that takes picturesof the blood flow through the veins in a certain area ofthe body, in my case my upper body, including neck andchest. The results shocked me. The Indian doctor reportedabsolutely no blockages in any of my neck veins. This Ilearned in the back of a taxi in the state of West Bengal,en route to a friend’s wedding. It was my mom who calledwith the results.“She kept telling me not to cry. But the tears burned myeyes. I had no words. But I was heartbroken that I wasnow ineligible for a possible treatment – no matter howcontroversial it was. My hopes for better health weredashed.”After the wedding of her friend Priya’s investigativeinstincts as a journalist kicked into gear and she set aboutrevealing the extent of MS in rural India. Priya’s first stopwas Dr Rudra Nath Bhattacharya, who took Priya asideand told her that the chances were high “MS wouldnever be diagnosed.” This was “because you know ourcountry is a poor country. And about 75 to 76 per cent ofour population lives in the villages where we really don'thave health facilities everywhere, though government istrying very hard. And sometimes our health facilities aren’taccessible because of the long distance from the villages.Sometimes some of the tests they cannot afford.”Dr. Bhattacharya also pointed to Priya “that most healthcare workers in rural India have other preoccupations:basic public health like immunization for children andpregnant mothers, looking after sick children, diarrhoea,respiratory tract infections, control of communicablediseases, prevention of blindness, anaemia, hypertensionand diabetes.“So in fact most of our healthcare workers are loadedwith a large number of health problems and also withthe huge number of records they have to submit in themonthly meeting - what work they have done, how manyiron tablets have been distributed, how many wormicidaltablets have been distributed, how many schools theyhave visited, how many pregnant mothers they have comeacross, whether they had been referred for institutionaldelivery. So on top of this, an issue like MS will be a kind of,what should I say, a new thing.”Dr. Bhattacharya told Priya “many people in the health fieldhave no idea what the illness is, let alone how to recognizeit. Priya tells us that “Dr Bhattacharya is in favour of multicentrestudies in India to track the disease, and he wantsto create awareness amongst healthcare professionalsthrough education.”After leaving Dr. Bhattacharya, Priya travelled to the southwestern state of Karnateka to meet with one of the fewneurologists studying multiple sclerosis in India. Dr. LekhaPandit is with KS Hegde Hospital in Mangalore, a teachinghospital with an MRI machine, researches MS and treatspatients who come to her from as far as two states away.The morning Priya visited the clinic it was full of patients,all of whom were men. Dr. Lekha Pandit told Priya thatalthough she does see a couple of women, “the male of thehouse gets an easy preference over the female.” Dr. Pandittold Priya that “her team have made radio commercials inlocal languages to raise awareness about MS. She hopesthat more people - especially women - seek diagnosis andtreatment. She says what interests her most is why MS is ofsuch low prevalence in India.Dr. Pandit also told Priya that “I don't think it is genetic,but there may be modifying agents, environmental. Is itexcessive sunlight, is it that we don't have that much of avitamin-D deficiency or is it that there are gene-to-geneinteractions that protect us in a way that doesn't protectthe west?” Dr. Pandit also questioned the role of VitaminD plays in multiple sclerosis, telling Priya “Are we sure weneed to have vitamin D? Most of the data that is beingpublished is on whites. But if you look at Hispanic dataand African American data you would find that there isvitamin D deficiency, But they have a low prevalence. Sowhy? Vitamin D deficiency exists but not the increase inMS. Obviously it's not a simplistic one plus one equals two.I don't think vitamin D deficiency alone can explain.” Priyaadds that “Dr. Pandit has been collaborating unofficiallywith Canadian Dr. Dessa Sadovnick, a researcher whosework has focused on genetic susceptibility in MS. Sadovnickworks with patients at the University of British Columbia’sWestern Pacific MS Regional Research and Training Centre.Sadovnick is trying to find out if rates of MS are changingin South Asian communities in North America.“So what you have to do is compare it to the populationof origin to find out are we having differences. Are weAUDIO BOOK CLUBCome along and join in a lively discussionabout one book per month on the firstTuesday of each month at the Wilson Centre.MP3 players are available for loan.For more information please contact:Nicola Ryan on 9365 4830 orNicola.Ryan@mswa.org.aubecoming more a North American type illness that you findin the patients?” Priya tells us that Dr. Sadovnick is currentlydoing the same research with Asian populations in BritishColumbia. Dr Sadovnick tells Priya that “We’re finding thatwith the Chinese, we're finding that the MS profile we seein China is different from the profile we see in Canada, inimmigrants even. But when you get to the first generationthey're getting much more classical MS like we would seein non-Asians. So having that background in the countryof origin is a very important factor in understanding thedisease.” So far, Sadovnick says she’s been unable to securefunding to study South Asian patients in British Columbia,where more and more MS is appearing in people of Indo-Canadian descent. Sadovnick in Canada and Pandit inIndia are sharing information in hopes to standardize thedata collected.Dr. Sadovnick also told Pryia that the picture of MS inCanada as a white person’s disease is changing. “That wasthe old picture of MS”, she says. “It used to be thoughtit was a disease of Caucasians of northern and centralEuropean ancestry and was virtually non-existent in manyother parts of the world. Now we're finding MS is becomingmuch more of a global disease. That it is being recognizedand diagnosed much more often now in people who arenot of northern or central European ancestry. And if you gothrough the profile of the people who go to an MS clinictoday versus fifteen, twenty years ago, it'll be very obviousthat that's the case.” I am part of the new picture, Pryiaconcludes.MS Society Western Australia 12 Summer 2012 MS Society Western Australia13Summer 2012

Your SocietyHEALTH & WELLBEINGArt TherapyBy Leonie WellingtonThe MS Society is delighted to have run their first Art Therapyworkshop in February. Due to the positive response ourintention is to offer another in the coming months.Art therapy has been around for some time now but in morerecent years growing research has validated its gentle yetpowerful benefit to those dealing with physical and mentalhealth challenges. Art therapy is a powerful modality formany dealing with a wide range of conditions, includinganxiety, depression, bipolar disorders, chronic illness,trauma, chronic pain, anger issues, and adjustments to lifetransitions. It can help to reduce symptoms of distress, gaingreater self-awareness and generally improve wellbeing tothe mind, body and spirit.Art therapy uses the creative process as a tool to nurtureself-expression through creating art. It helps to processfeelings that are outside the limits of verbal communication.This gives us the opportunity to understand and respondmore effectively to emotions that can be overwhelming. Itis a way that we can link our inner and outer worlds so thatwe can respond to life in a richer more meaningful way.The emphasis of Art therapy is on the process and not theproduct. No skills or background in art are required, only asense of openness and curiosity. A variety of art materialscan be used such as paint, pastels, clay and collage. Themesof exploration can include; dreams, emotions, the body,identity and existential issues such as, ‘Who am I’.The process is supported with journal writing whichhelps to integrate and maximise the left brain- right brainconnection. In our Art therapy workshops we incorporateelements of mindfulness which promotes self-awarenessand give tools to respond to challenging emotions andmental confusion.Participants have often stated the importance of sharingwith others as being a vital part of feeling understood,feeling less isolated and more connected. The groups arekept to small numbers to ensure a sense of safety andsupport.Comments from participants: I have gained awareness, encouragement andpeacefulnessExtremely helpful in bringing out emotions, expressingthem in pictures or words and hopefully making senseof why they are there and how you can deal with themincluding, asking for helpThis was the first opportunity since being diagnosedto meet & talk to other people with MS. I found itinformative & left feeling positive. I look forward tomore in the future. I have gained knowledge and understanding,connection to others and meditation techniquesexpressing myself through colour and pictures workswell for me to deal with thingsIf you are interested in attending any Art therapy orMindfulness workshops please contact Jeorge on:Ph: 93654839Email: Jeorge.Chambers@mswa.org.auFacilitator: Jeorge Chambers - Bachelor of Couns. (BC),Adv dip. Transpersonal Art therapy (IKON) and 25 years’experience in mindfulness, holistic mind/body approachto health and personal growth.“No matter how well you do, it only becomesan accomplishment when you tell yourself thatyou did well” Bob MontgomeryThis edition sees a focus on parenthood and the way thatchanges our lives. One of our Community Access Nurses,Kristie has contributed a piece on MS and pregnancy.Being a parent can be rewarding and challenging all atthe same time and adding a chronic illness into the mixprovides its own unique considerations. With this in mindI have included information on how to communicate withyour children about your MS.Pregnancy & MSBy Kristie Kunstmann RNI would like to introduce one of our members, Nikki,who has kindly put her story in writing for our Life GoesOn article. The stories of our members are an importantaspect of the Bulletin as they are the real life journeys ofliving well with MS. If you would like to share your storyplease contact leonie.wellington@mswa.org.au. If youdon’t consider yourself a writer please don’t let that putyou off as we are here to help you.If you would like any more information about what youread in these pages or have suggestions for topics youwould like covered please don’t hesitate to call me on9365 4808.that experienced a relapse during pregnancy were morethan twice as likely to have a relapse after the baby’s birth,compared to women that did not have a relapse duringpregnancy. MS is not directly inherited, so children with aparent with MS are estimated to have a two per cent risk ofgetting MS themselves.Whether or not you have MS, the period immediately afterthe birth can be a very difficult and tiring time and it cantake some time to adapt to the demands of having a babyto care for. For women with MS it is particularly importantto ensure there is support during this time. It may be a goodidea to make a list of family and friends who can help withspecific tasks, to take the load off of you. Find out aboutservices, local service provisions for mums and supportgroups. Many women find it reassuring to know localsources of support are available, and find early planningmakes life easier when the baby is born.Having MS shouldn't stop you from having a baby, but youwill need to consider careful planning with your partner,family, and your Neurologist before getting pregnant.Many women who have MS are diagnosed around thetime when they may be thinking about starting a family.MS does not affect women's fertility. However, if you aretaking any immunotherapy or other medications, andyou decide to try for a baby, the usual advice is to waitat least three months after stopping treatment beforetrying to conceive and remember to discuss this with yourNeurologist. It is important to discuss your medicationswith your Neurologist before making any changes as it canbe dangerous to stop taking some medications suddenly.None of the disease-modifying medications have beenapproved for use during pregnancy. When determiningwhether you should stop taking a medication duringpregnancy, the doctors will look at the risks that this wouldpose to you and the baby. If you do become pregnantwhile taking disease modifying drugs, you should consultyour Neurologist as soon as possible.There have been many studies examining the impact ofpregnancy on MS. They all show that pregnancy appearsto have a positive, protective influence, with relapse ratesgoing down, especially during the third trimester. Thereasons for this are not fully understood, but it is thoughtthat hormone levels play a role. Several studies haveshown that mothers with MS are just as likely as any othermothers to have healthy pregnancies and babies, andthere is no research to show MS may increase risk of birthabnormalities. However, in the first three months after thebaby is born, the risk of relapse rises. This is thought to occuras hormones return to pre-pregnancy levels. Studies haveshown that women that have relapses in the year beforepregnancy are 50 percent more likely to have a relapseafter the birth of their child, compared to the women thatdid not have a relapse the year before pregnancy. WomenMS Society Western Australia 14 Summer 2012 Summer 201215MS Society Western Australia

HEALTH & WELLBEINGHEALTH & WELLBEINGHEALTH & WELLBEINGHEALTH & WELLBEINGExplaining Chronic Illness to Your ChildBy Jan Buxton-TrufferMS, CEAP, counsellor with the Sheppard Pratt Health PlanEmployee Assistance Program.As a parent, if you become ill, your illness has a profoundimpact on the entire family system. In spite of your ownincreased stress, confusion and anger, your children willlook to you to maintain or return to normal family routinesas soon as possible. If you, or your spouse, present animage of feeling overwhelmed or being consumed withthe illness, your children will feel as if life is spiralling outof control.As parents, it is often instinctive to want to protect ourchildren from hurt or pain. We want them to be carefree andexperience the joy and happiness that only childhood canoffer. However, as much as we don't want to acknowledgeit, children do experience the same kinds of losses anddisappointments that we as adults experience. We, as thenurturers and protectors, must explain and "normalise"these experiences in the best way that we can.No matter what the age of your child it is helpful to knowand understand the developmental stages and howchildren at each stage can be expected to respond tostress and change. Developmental refers to the conceptthat a child's behaviour, like her physical growth, developsin patterned and predictable ways. The age and goals ofyour child at each stage will guide you in how and whenyou need to intervene when your family goes through acrisis.Adults generally assume that a baby is too young orunaware to notice a change in a parent or family. However,infants and babies are extremely intuitive and can sensewhen a parent is upset or anxious. Any change in dailyroutine can throw a baby into a fretful state. When crisisoccurs, you may see behaviour changes: increased cryingand irritability, changes in appetite and sleep schedules andclinging behaviours. Treat regressive behaviours casuallyand return to a normal routine as soon as possible.If your toddler asks a question about your illness, answeropenly and honestly. A rule of thumb is never offer moreinformation than the child has requested. Concealing theillness or whispering about what is happening will nothelp. Children always suffer more from the tension of notknowing than from knowing the truth. Allowing the childto act out fears and frustration through play or art is alsoan excellent help.Preschool, ages four to five years, there is an increasedreliance at this stage on "magical thinking." To a preschooler,anything that happens, good or bad, is relatedto them and their behaviour. If a parent becomes ill duringthis stage, the pre-schooler’s view will be: "Mummy is sickbecause I told her she was mean."In response to stress and change, pre-schoolers oftenpresent with extremes, either being all good or all bad.Regressive behaviours are likely to occur, especially anincreased reliance on a favourite security object (blanket,teddy bear, thumb-sucking). This is the child's attempt tomaintain a sense of control and to feel less frightened. To helppre-schoolers, it is essential to assure them that the illnessis not their fault. Returning to a security object should beencouraged, rather than discouraged. Answer all questionshonestly, including those about death. This is a good time torely on books which help you help your child work throughcomplex and often frustrating feelings about illness.For school-age stage (six to ten years) while parentsand family are still central, the biggest concern is: "Whatwill happen to me if you are ill?" This self-centerednessis normal. Although there is still some overlap withmagical thinking, by the age of eight children realizethat illness may not be their fault. However, theystill are not mature enough to remove themselvescompletely from the situation. The thinking now is: "IfI'm good, Mommy will feel better and things will be fine."School-age children tend to show strong emotionsin reaction to change. They may show anger at bothparents: "Why did you let this happen?" They tend tohave a lot of somatic complaints (headache, stomachpain, fatigue), especially when leaving for school. Thechild is often fearful to leave the ill parent; he or she oftenassumes a protective role. Earlier in this stage, childrenare fearful that if they leave, the parent may die. Assuch, preoccupation and fear of death may be common.When attempting to help school-age children, it isimportant to recognize that angry outbursts are anattempt to grieve or release fearful feelings. The oppositereaction, denial, may also occur as the child hopes that theillness will just disappear. Children will have many morequestions and concerns at this stage. However, only thesimplest explanations need be given. Information theydon't understand will only frighten them and increaseanxiety. Questions about death must be answered directly;evasion leads to more fear.Changes in school performance, either for better or worse,are common. It is essential to let teachers know about thechanges at home and to establish a feedback loop.Adolescents work to achieve separation from parentsand to become independent of the family system. Undernormal circumstances, adolescents are known for theiremotional volatility and moodiness. When a crisis occurs,you may see and hear even more expressions of anger,hurt and confusion. The opposite extreme is also common-- they may withdraw completely and not want to discussyour illness or their feelings about what's happening.There will be ambivalence about helping you. If you havean adolescent who is willing to do his or her part in helpingthe family, this will not extend to outside the home. Fittingin and acceptance by peers will be much more importantthan appearing helpful to the family. It is normal for themto be embarrassed by the illness and not want to discuss itwith friends or teachers.This is an essential time for parents to fine tune theircommunication skills. It is imperative to listen to andunderstand the volatile outbursts of the adolescent. Acceptthese feelings without overreacting to their tone. Continueto set limits, rules and boundaries. These outbursts areHas your Mum or Dad got MS? A booklet for youngpeople on facts and feelings about MS – Availablefrom MSWA please ask member services staff or callreception on 9365 4888Talking with your kids about MS – MS Trust websitehttp://www.mstrust.org.ukKids’ Guide to MS – MS Trust websitehttp://www.mstrust.org.ukYoung Person’s guide to MS – MS Trust websitehttp://www.mstrust.org.ukMSWA Counsellors are able to provide support andhelp develop skills for communication as well as aconfidential, non-judgemental and safe space for youto explore your own thoughts and feelings.Phone 9365 4836often fear-based. At a time when they often feel out ofcontrol, teenagers cling to the hope that parents and familywill remain structured and safe. Remember, even thoughhe or she appears grown, your adolescent needs as muchlove and reassurance as your younger children.In discussions about your illness, be prepared to give muchmore detailed information, especially all the facts aboutthe illness. A major concern or fear will be: "Will I get it too?"Some adolescents (the withdrawing ones) may not want tohear about or discuss your illness. They may express angeror disappointment toward the ill parent. These behavioursserve to diffuse their own fears or feelings of inadequacyin controlling the changes that are occurring or may occurin the future. Honest and open discussion of your ownfeelings may help them to express their own feelings.One of the most difficult obstacles for parents of theadolescent is to overcome the expectation that he orshe will be mature enough to handle the situation and toprovide support. In actuality, they are overburdened withtheir own concerns and too vulnerable to carry the adultconcerns.Adapted fromht tp://lupusmichigan.blogspot.com. au/2007/09/explaining-chronic-illness-to-your.htmlResources for talking toyour children about MSMS Society Western Australia 16 Summer 2012 Summer 201217MS Society Western Australia

LIFE GOES ONHEALTH & WELLBEINGHEALTH & WELLBEINGBy Nikki NevilleThey say ‘things happen for a reason’. In reality, there havebeen times when I have been hard pressed to accept that.In February 2007, I had been busy preparing to entertainfriends for lunch. Whilst I truly love cooking, entertainingalways seems to cause me unnecessary stress. A great daywas had by all, however by the end of the day I realised Ihad no feeling in my perineum. Odd, I thought, but beingthe ‘self-diagnosis’ guru that I am, I convinced myself thatit was more than likely a pinched nerve in my back thatmy highly skilled Physio would fix in a heartbeat. Morningcame and my concerns deepened. Blessed with an amazingGP I chose to pay her a visit. After X-Ray’s, a CT Scan, MRIand finally a lumbar puncture the diagnosis of MS wasconfirmed. I found that process difficult - not so much thetests in themselves but more so the waiting. Waiting forresults. The ‘not knowing’.On receiving the news I was overcome with a huge senseof relief. Finally I knew what I was dealing with and couldsomehow take control in whichever way was recommendedto me. I had convinced myself of a diagnosis far worse. Thenext challenge was to inform family and friends and theirnatural reaction of disbelief and, in some cases devastationwas difficult to witness. Instantly I became aware of howmany people knew of someone who had MS and very soonmy wallet was filled with their contact phone numbers. Itwas so heart-warming to have the support of family, friendsand work colleagues who rallied around me.My first line of treatment was Rebif. Learning to self-injectwasn’t an easy but I always knew that the extra layer of fataround my middle would one day serve me well.Experiencing numbness and altered sensations, 4 monthsinto my treatment I spent my first bout in hospital. Ibelieve I was meant to have this episode as it linked meto my current Neurologist, a truly wonderful professionalwho always makes me feel like I am his only patient. Heintroduced me to a gorgeous nurse from the MS society,another amazing professional who would, for the next fewyears, became a truly fantastic support.Following complications on Rebif I was transferred overto Copaxone. Needless to say going from injecting threetimes per week to daily injections didn’t please me but Iwas truly thankful for the chance to continue to take someform of control.In the November of that year I turned 40 and after a fairamount of convincing I celebrated well with family andfriends.The following year another episode put me in hospital. Insome weird way these hospital trips gave me the excuse to‘stop’ and do nothing. That luxury was short lived as this,fortunately, was my last visit to hospital.In 2010 I was approached by the MS Society to become apart of a team of fellow members to receive some trainingto form a Peer Support Group. We were equipped with skillsto provide phone support to, mainly, the newly diagnosed.Consequently I had the opportunity to provide support toa few women. Having the privilege of hearing their storieswas also hugely beneficial to my own personal growth.The added advantage of being able to assist the newlydiagnosed was that I met a terrific group of women whoformed the remainder of the Peer Support program, someof whom I am still in contact with today.At the commencement of last year and after strugglingwith the injections I was relieved to be able to switch to theoral treatment and was prescribed Fingolimod togetherwith Vitamin D (which I have been been taking for manyyears). Replacing injections for the oral pill has been greatfor me and I’m now feeling great.On reflection I have come to believe my diagnosis of MSdid happen for many reasons; many of them great reasons.I have learnt to appreciate and accept the support of theloved ones who surround me. I have met and had theopportunity to trust wholeheartedly some amazing healthprofessionals. I have formed new friendships. I haverealised how fortunate I am to have had so many variedtreatment options available to me. I have recognised theimportance of doing what is required to maintain the bestpossible health - mentally, physically and spiritually. Finally,at 45 I’ve acknowledged that it’s OK to take care of me!13 26 60www.afterhoursmedical.com.auDo people judge yourbook by your cover?By Rosalind Joffe: Working with Chronic Illness BlogShe was having a bad health day withdebilitating ulcerative colitis symptoms whena co-worker commented, “I hope you feel asgood as you look.”My client shared this with me because she was surprisedby how good it felt to hear this. At least, she said, someonewasn’t making assumptions based on how she looks – ’likejudging a book by its cover’.If you’re living with a chronic illness, do you know thatdisconnect between how you look and what you’reexperiencing? When people assume how you’re feelingbased on how you look, it can be so isolating anduncomfortable because you typically don’t feel as goodas you look. It’s even more difficult when someone askshow you are, you say that you’re not feeling so well and theresponse is, “But you look so good.”Once, when I shared how hard this is with a ‘healthy’ friend,her response was, “But wouldn’t it be worse if you lookedas dreadful as you feel?”Neither is good. But when you’re told you look fine, howcan you say, “But I feel like crap!” without others thinkingyou’re being a drama queen. The truth is we don’t havea window into anyone’s internal experience, emotional orphysical. The only way we know is if they share it. But unlikean acute problem, such as a back strain or a dissolvedrelationship, a chronic health problem will not heal. Thisdisconnect between your internal experience and whatshows externally doesn’t change.Which is why my clients talk about this as much as theydo. We, who live with chronic health issues, spend aninordinate amount of time on this issue. There are timeswhen you can explain that youdon’t feel the way you look.But when the relationshipsare relatively impersonal, suchas at work, that’s often toomuch detail. It’s easy to createmisunderstanding and evenmore psychic distress foryourself.So, the next time you greetsomeone, try out, “I hopeyou feel as good as youlook”. You’d be modellingit for others. And you mustknow someone who could benefit from hearingthis, too?http://workingwithchronicillness.comPeer Support ProgramThe Peer Support Program is a telephone supportservice which links people with MS to Peer Supportvolunteers who have been specially trained by theMSWA.The Peer Support Program is a confidential serviceprovided by volunteers who understand the rangeof experiences involved in living with MS. Thevolunteers are skilled listeners. They offer support,not counselling, and provide an empathetic andobjective ear.Talking can help;ü It often helps to talk to an objective person toshare the frustrations, anxieties, or concerns thatmay be adding to the stresses of daily life,ü Family and friends, though well meaning, willnot understand your situation in the same wayas some else living with MS,ü The Peer Support volunteers are all Members ofMSWA who vividly remember the anxiety thatfollows diagnosis.For more information contact:the Peer Support Coordinator Leonie on 9365 4808or at leonie.wellington@mswa.org.au.About Rosalind JoffeBuilding on her own experience living with chronicillnesses, including multiple sclerosis and ulcerativecolitis, Rosalind Joffe founded the chronic illnesscareer coaching practice, cicoach.com.Dedicated to helpingothers with chronic illnessdevelop the skills theyneed to succeed in theircareers, Rosalind firmlybelieves that living withchronic illness does notpreclude living a full andsuccessful life.MS Society Western Australia 18 Summer 2012 Summer 201219MS Society Western Australia

HEALTH PROMOTIONHEALTH PROMOTIONBy NICOLETTE MADRYNEW RESOURCES FOR MEMBERSProducing new information resources is a major part of myrole as Health Promotion Officer. Making sure Membersknow about them is another major part!NEW!!! MSWA Education Events 2013Now that our calendar ofseminars, web chats andforums are filling the yearfast, it is important for anyinterested Member to knowwhat is on offer through MSWA.Information on the variousevents from Annual Members’Forums to Art Therapy toFatigue Management arecovered in this booklet. Thecontact person for each eventis included and times, datesand venues are includedwherever possible. So if youwould like to know what MS specific education events arebeing held in 2013, please contact Nicolette Madry, HealthPromotion Officer on 9365 4824 or email nicolette.madry@mswa.org.au.Perth Members’ Forum 2013Program includes:• Professor William Carroll,MS Treatment Update 2013• A/Professor Helmut Butzkueven,Royal Melbourne HospitalNational and international research update• Bel Cobcroft OT, Sleep SpecialistHow to get a good night’s sleepDate: Friday 7th June 2013Time: 9.00am - 12.30pmVenue: Perth Zoo Conference Centre20 Labouchere Road South PerthRSVP: Nicolette Madry on 9365 4824 oremail nicolette.madry@mswa.org.auFeedback from the Members’ Information NeedsSurvey 2012In December 2012 Nicolette Madry, the Health PromotionOfficer, mailed out an anonymous survey to all Membersseeking feedback on the various modes of contactand delivery used by Member Services to disseminateinformation about living with MS. We were very pleased toreceive a 35% return rate i.e. 650 responses from Members,many of whom indicated they have been diagnosed morethan 11 years (40%) ago and between 3-10 years (45%).70% indicated they are “low support” and two thirdsindicated minimal or no direct contact with MSWA staff inthe preceding 6 months.The MSWA Member’s Information Needs Survey 2012 hasprovided a great deal of very useful information regardingthe future planning and delivery of information aboutservices and educational events for Members.For instance, the preference for direct delivery ofinformation through electronic means has surpassed thepreference for direct mail outs, although this still remainsrelevant to many without access to email, the internet and/or a computer or through personal preference.Graph: Preference of modes of delivery of information byMSWA MembersThe Members’ e-newsletter, delivered monthly throughout2012, has been valued as relevant by the majority ofrespondents receiving it; thus validating it as an effectivemeans of communicating information about researchand treatment updates, Member’s seminars and newinformation resources and web based links.The Web Forums appear to be an attractive option for asmall group of Members, many of whom live in regionalareas. Barriers to engagement include being unaware ofthe Web Forum and its topics, beliefs around not needingthe information required and fears about anonymity.The results encourage us at MSWA, to develop topics foreducational events and information resources based onMember feedback to ensure relevance. The informationprovided by the MSWA should cover a broad range ofMS related topics from both the medical and lifestyle/well-being perspectives. Information resources are beingdeveloped on a broader range of topics currently outside ofthe core services provided by MSWA e.g. diet and nutrition,exercise and complementary therapies. Also there wasa very positive response to the idea of Member Servicesdeveloping and disseminating informational video clipssourced and or produced by MSWA. So resources will bedirected to developing this form of information deliveryfor Members.Bunbury Members’ Forum 2013The first big Member’s Event of2013 was the Bunbury Member’sForum held in February at thenewly refurbished HighwayHotel. Nearly 80 Members, lovedones and MSWA staff filled theroom to hear Dr Andrew Kellyexplain the latest and soon tobe released disease modifyingtherapies available to treat MS. Amyriad of great questions madesure everyone got the most outof Andrew’s visit to Bunbury.Dr Michelle Byrnes was veryanimated as she outlined theemerging and exciting field ofneuroplasticity, encouragingnot only training of the brain forphysical, mental and emotionalbenefits, but for simply improvingthe quality of life by relating anytraining to what is meaningful ineach person’s life. It was a hopefulpresentation for anyone findingtheir memory, concentration andproblem solving skills are notquite what they used to be (whether you have MS or not!).And finally MSWA OTand Sleep Specialist,Bel Cobcroft,presented tips andtricks in answer to aquestion asked by themajority of the MS (andgeneral) population,sometime in theirlives…”How do I get agood night’s sleep?”.I cannot share any of her lively presentation however,as Bel will be also speaking at the Albany and PerthMember’s Forums in 2013. So you will have to attend tofind out what a sleep specialist can tell you!All in all it was a very successful forum with many new ideasand interesting conversations as a result. Many thanksto all the speakers and to Sue Shapland for being a veryknowledgeable MC on the day. I hope to see everyoneback at the next Bunbury Member’s Forum in 2014.29th May 2013 - World MS Awareness DayWe are very excited to announce that to celebrate WorldMS Awareness Day this year, the Wilson Centre will openits doors to the public! There will be tours, presentations,information stalls, activities and demonstrations forMSWA Members, their families, health professionals andthe public. Find out more about MS and what servicesMSWA provides to people living with MS. You may wantto tour the gym and talk with a physiotherapist, or join inthe Meditate for MS session with one of our Counsellors.A program of events will be released closer to the date,so contact Nicolette Madry, Health Promotion Officer on9365 4824 or email nicolette.madry@mswa.org.au if youwould like one emailed or posted out to you.Are you receiving theVitality! e-newsletter?Do not miss your monthly update on the latestnational and international MS research, evidencebased information for living well with MS, tipsand strategies from other people with MS andopportunities within MSWA to attend free seminars,education programmes and services that supportyou and your loved ones.Ensure you receive the e-newsletter by:1. Making sure MSWA has your correct emailaddress2. If we have your email address and you are stillnot receiving the newsletter you may need tocheck your spam folder. If the e- newsletter isnot reaching your inbox, add the email addressnicolette.madry@mswa.org.au to your contacts orsafe sender list so your account will recognise thecorrespondence as genuine.MS Society Western Australia 20 Summer 2012 MS Society Western Australia21Summer 2012

ABOUT MEMBER SERVICESABOUT MEMBER SERVICESFor more information see our web page: www.msaw.org.au or ring 9365 4888 to speak with one of our friendly staff.We are always happy to answer your queries and source information for you. Please leave a message on our voicemail ifwe aren’t able to take your call because we are on another call or out on a visit.Nursing:Our experienced MS nursing team is here to provide advice and support from the time of diagnosis. We aim toprovide relevant and accurate information for our Members, and their families, to help you better understand yourmultiple sclerosis, your treatments and managing your symptoms. We provide:• Information and education on all aspects of MS, treatments and research• Training and support for MS treatments• Assessment and care planning• Hospital and home follow up• Annual trips to regional centresFor information ring 9365 4838Counselling:Some people need support to deal with the news that they have MS and the challengesthat may present over time.Our qualified counsellors are here to provide a safe space for you to explore and understandwhat is behind thoughts, situations or feelings that you, and your loved ones, may findworrying or distressing.For information ring 9365 4836Welfare:Our welfare officers have a sound understanding of social welfare policy and are there to provide information andsupport for Members, and their carers, to access Government benefits and entitlements. This includes pensionsand allowances and advice on accessing legal aid and advice on Power of Attorney and Guardianship.For information ring 9365 4889 or 9365 4835Camps:For many years the Society has received Lotterywest support to run 5 camps each year; 2 for people with MS, 2 forcarers of people with MS and 1 family camp for parents and their primary school aged children.For information ring Sumit on 9365 4843HEALTH PROMOTION:Health promotion involves providing information and educational opportunities and resources to enable peopleliving with MS to increase their control over and improve their health. At MSWA we are seeking to improve the flowof quality health related information from the experts to our Members through seminars, forums, web activitiesand resources, an e-newsletter, fact sheets and promotional material for people with MS, their families and friends,health professionals and members of the public.For more information ring Nicolette on 9365 4824 or email nicolette.madry@mswa.org.auPhysiotherapy:Our physiotherapy team provides an essential service for ourMembers from the time of diagnosis and throughout theirjourney. Detailed physical assessment, appropriate exerciseprescription and advice on aspects of MS such as managing heatsensitivity and aids and equipment can be accessed. Programsare delivered at the Outreach Groups and include access tovarious programs and massage. Supervised hydrotherapy isalso available at Wilson and in Albany.For information ring 9365 4834Occupational Therapy:Our team of occupational therapists works with Members to assist them to maintain employment and other interestsfor as long as possible when faced with challenges associated with disease, injury or ageing. We provide:• Assessment and advice on workplace and home modifications• Information booklets and advice on aspects of working with MS, disclosure and Superannuation• Fatigue management programs• Assistive technology advice and support• Assessment, prescription and training on aids and equipment• Information on taxi subsidies, the Companion Card and electricity subsidies• Air conditioning and equipment grant applications for low income earnersFor more information regarding Occupational Therapy ring 9365 4831In Home Care:We are able to supply limited in home supports such as assistance with personal care for peoplewith disability due to MS to help them remain in their homes. Care and supports are providedthrough a combination of funding from the Disability Services Commission and our ownfundraising efforts. We also manage DSC allocated individually funded care packages.For more information please ring 9416 4505Other services include:• Respite at Margaret Doody House and Treendale Gardens• Outreach Groups in the metro area, Bunbury and Albany• Support groups for Carers and Members• Newly diagnosed and other seminarsMS Society Western Australia 22 Summer 2012 Summer 201223MS Society Western Australia

Your SocietyOccupational Therapy at the MS SocietyYour SocietyMobility Around RottnestBy Sandra WallaceThe role of the Occupational Therapist (OT)at the MS Society may best be understoodthrough a description of the varied programswithin the department. In essence, however,the OT is perhaps best known for equipmentprescription, the application for fundingfor that equipment where possible, and theteaching of strategies to enable participation.The client’s goals and readiness for change arealways central to the therapy process.Staff in OTThe OT service is primarily funded by the Society, throughsuccessful fund raising efforts. A small amount of fundingcomes from the Health Department and DSC. In all we have12 staff: Sandra, Heather, Robyn, Ilissa, Verity, Amanda,Narelle, Bel, Simone, Katie, Emma and Sumit. Most staffare part-time. Katie is our newest staff, working down inBunbury one day a week.OT ProgramsThe OT process involves assessment, recommendationswhich may include strategies or training, trial of equipmentand funding for that equipment. The OT frequently doeshome visiting as this is the environment in which theclient usually needs to be seen. For example, the client candemonstrate how they are managing their transfers, orwhere there are difficulties with transfers solutions can bediscussed relevant to the situation.The following headings identify core areas of OTinvolvement, and a brief description is given.Wheelchairs and seating is a specialised skill of the OT.Things to consider include what the client needs to do,comfort and pressure management, pain, and possiblefuture needs of the equipment. OT works closely withsuppliers in the trial of a range of products to address theneeds. Sometimes needs conflict, such as wanting a smallwheelchair for around the house but needing a reclinefunction in the chair to manage oedema. Where possiblethe equipment is trialled in the home for a few days. OT atMS does not usually become involved when the equipmentis provided by the hospital, such as under the CommunityAids and Equipment Program (CAEP).Home safety includes rails at steps and in wet areas, carelink alarms and door security. We have met many peoplewho leave their front door unlocked to allow support tocome into the home, and this is a home security issue.Alternatives include key lock boxes, where the key is securebut accessible to others who need to enter the home.Assistive technology devices is such a rapidly changingfield, and very exciting. People with physical restrictions canparticipate through technology devices. OT used to look atalternative switching devices to operate equipment such asTV remotes. Now this can be set up through aps on Ipads,and this equipment is now mainstream and cheaper thandisability targeted equipment. Technology has enabledthe individual to maintain contact with others whether itbe with telephone or computer, the pleasure of readingusing electronic devices, and so on. The opportunitiesseem limitless. The OT has an assessment room at theWilson facility with a range of items to demonstrate, assessand loan for trial purposes.Employment is a very important area as helping peoplewith MS to remain in employment for as long as theychoose, or to return to employment, can have a significantbearing on their financial status and their overallwellbeing. Employment is about having structure andfeeling valued, and developing or maintaining skills. Aninformation booklet has been put together on core issueslike disclosure, discrimination, your legal requirementsand your rights. Funding is available through Job Accessfor equipment that can enable continued working. Ourhope is that our Members will get good informationabout their options regarding work, to help them makeinformed choices. The OT will visit the workplace, provideexplanation of symptoms and their management, andmake recommendations to minimise the negative impactof those symptoms. A work readiness program is aboutto commence, to support members wanting to return towork.Fatigue is common in MS, and often contributes toreducing work hours. It also impacts on overall quality oflife. We have been running a 6-week fatigue managementprogram for several years now. This program was developedfor MS, and sound research has demonstrated beneficialoutcomes. Not everyone is able to attend a group program,so individual sessions are also offered. A booklet has beenproduced explaining the causes of fatigue and practicalstrategies to manage this symptom.Sexuality and intimacy is a part of relationships, yet it hasnot been given much attention in the past. Our specialistOT, Narelle, has a sound understanding of the issues relatedto sexuality and meets with individuals or couples todiscuss ways to maintain closeness and satisfy relationshipneeds. Narelle has also given numerous presentations tohealth professionals and developed a unique resource onproducts available.Sleep is basic to human need and sleep issues areexperienced by the community as a whole. Many adults arepoor sleepers, and sleep deprivations can have a significantimpact on coping skills, mood, energy levels, and generalwellbeing. Neurological conditions can influence sleepquality. Bel is our specialist OT in sleep. Information is nowavailable to understand sleep better, improve quality ofsleep, and to improve quality of life.Cognition is the thinking and memory components ofbrain function and MS can affect these functions. Goodhabits around being organised and having routine arehelpful strategies. New research suggests that doingchallenging activities will help lay new neural pathwaysto help reduce losses. Just like the body, the brain needsgood food, exercise through stimulating and challengingactivities, supportive social networks, quality sleep andphysical exercise that involves heavier than normalbreathing. Heather is our specialist in cognition, andcan assess and make recommendations for strategies tomanage any changes that are impacting on routines.Other programs in OT include driving assessments, airconditioning grants for eligible members, camps forrecreation and respite, and some social support programssuch as the ‘stay in focus’ groups at Wilson and Beechboroand the Coffee Club in Wangara.Accessing OT servicesThe OT department now has a therapist available dailyto take calls and to reduce the wait time for return calls.To speak with an OT simplyphone reception on 93654888 and you will be putthrough to a therapist.Alternatively one of ourother health team staff canrefer you to the OT service.Once a referral is received itis followed up as quickly aspossible.I am very excited at thegrowth and diversityof programs offered inOT, providing a uniquespecialised service thathas a positive impact onmembers and their families.A golf buggy fitted with hand controls has recently beendonated to the Rottnest Island Authority for the exclusiveuse of people with mobility challenges/disabilities.This buggy will enable disabled persons who cannotride a bike or use public transport on the island to seeRottnest Island and its beautiful bays independently andwith dignity.The buggy is available for use free of charge to a personwith a mobility disability, or their carer.To make a booking to use the buggy, please ring JodieMcDonald at the Rottnest Island Authority who is stationedon the island on 93729767.Bulletin on AudioDid you know we make the bulletin available on CD forMembers? This is a free service and can benefit thosewho have difficulty reading or fatigue while reading.The CD is formatted after the Bulletin comes out andthis usually takes 3-4 weeks.To receive the Bulletin on CD, please contactSandra Wallace on 9365 4804.MS Society Western Australia 24 Summer 2012 MS Society Western Australia25Summer 2012

Your SocietyNew OTs Join the TeamKatie GobleMy name is Katie Goble and I am a new graduateoccupational therapist who has joined the team inthe Bunbury/Busselton region.I will be working one day a week and I am very excitedto begin to get to know you and I hope to meet youall soon. You may also see me in my other role for theMS society as a support worker.I am new to the Bunbury region and have fallenin love with the city already. I enjoy bush walking,attending a running club and exploring all the southwest has to offer (we really are very spoilt here).BOOK NOWSimone BunterJust wanted to take this opportunity to introducemyself, especially to those people I have not yet hadthe pleasure of meeting.I had a placement at the MS Society when I was astudent not long ago and really loved the work I wasinvolved in and the enthusiasm of the other healthprofessionals. As you can imagine, I am very pleasedto now be part of the Occupational Therapy team.I have thoroughly enjoyed my first few weeks here;getting to work with so many different people, and Ilook forward to meeting many more in the future.If you are ever in the Wilson office, please feel free tostop by and have a chat and find out how occupationaltherapy could help you participate in the things youfind most meaningful.Kind regards,Simone BunterOccupational TherapistPh: 08 9365 4831Fax: 08 9451 4453BOOK NOWto receive bonus offers worth of over $150!to The receive MS Society bonus offers WA is worth pleased of to over announce $150! that we willonce again be raising funds through the sale of the popularThe MS Society of WA is pleased to announce that we will2013/2014 Entertainment Books!once again be raising funds through the sale of the popular2013/2014 Entertainment Books!BOOK NOWAs a valued supporter of the MS Society we are giving you the opportunity to help yourself to over$15,000 worth of savings at Perth restaurants, quality hotels, resorts & attractions for only $65.As At a valued the same supporter time you of the will MS be Society helping we us are raise giving valuable you the funds opportunity for our research. to help yourself to over$15,000 For every worth book of savings purchased, at Perth the restaurants, MS Society quality receives hotels, $13 resorts ! & attractions for only $65.At the same time you will be helping us raise valuable funds for our research.To reserve your book today contact the MS Society of WA on (08) 6454 3122 | harry.singh@mswa.org.auFor every book purchased, the MS Society receives $13 !or go online to www.mswa.org.au/entertainmentTo reserve your book today contact the MS Society of WA on (08) 6454 3122 | harry.singh@mswa.org.auor go online to www.mswa.org.au/entertainmentGreetings from the Sexuality Service!If we have not yet met, my name is Narelle and I am anOccupational Therapist employed by the MS Society toassist you with any concerns you may have with intimacy/sexuality related issues.Chances are, if you are experiencing any sexual changesdue to MS, others have experienced them too and havefound ways to creatively deal with/manage them.If you would like to catch up for a chat (either in personor on the phone), please don’t hesitate to contact me viaemail narelle.higson@mswa.org.au or phone 9365 4888.I look forward to hearing from youSLEEP FACTS……………..Did you know……..Sleep is one the greatest biomedicine challenges ofthe 21st century!In the US approximately 40 million people have chronicsleep problems!Sleep is a complex neurological behaviour found in allvertebrates!There is no single place in the brain that controlssleep!Sleep is required for many bodily functions fromthinking to immune responses and many more!There are differences in sleep requirements betweenmen and women!If you are interested in knowing more about sleep andits impact upon you, those around you and all thatyou do, you may like to give Bel Cobcroft the SleepAdvisor at MSWA a call on 9365 4832. Tuesdays only.You may also like to check out these interesting linksand resources for further information:The Australasian Sleep Associationwww.sleep.org.auThe National Sleep Research Projectwww.abc.net.au/science/sleep/facts.htmSleep Disorders Australiawww.sleepoz.org.auYour SocietyManageYour EnergyFatigue is a very common symptom experienced bypeople with MS and one that is often misunderstoodby family, friends and others.• Learn how to take control of your fatigue• Learn strategies that previous participants havefound useful• Share your experiences with others who alsoknow and understand fatigue.The program runs for 2-hours, one morning per week,for six weeks within a small group setting. Participantsare expected to attend all sessions, participate indiscussions and activities and complete take-hometasks commenced during each session.Programs will only run if there are sufficient peopleable to commit to the proposed day, time and venue.For further information or to register your interest andavailability, please contact Heather Mearns, OT, on9365 4894. If I am not available when you call pleaseleave a message and I will return your call.MS Society Western Australia 26 Summer 2012 MS Society Western Australia27Summer 2012

MEMBER’S STORYMS COMMUNITYBy Trudi FayThrough my life there have been severaldecisions I have had to make because of havingMultiple Sclerosis. Some of these were smalldecisions but some have been monumental,akin to grief.Using a stick for mobility. This decision was partly for publicappearance, for example so I had justification for crossingthe road slowly. I remember feeling really reluctant tostart using a stick, for aesthetic reasons, but as soon as Idid I realised immediately the value of this decision. I wasdiagnosed when my children were still very young and Iwalked daily with my youngest in a stroller to drop off andpick up the oldest from kindy. It was only when my toddlerinsisted on walking that I realised I couldn’t managewithout the stroller. The unease I had about being seenwith a stick was quickly overshadowed by the security thestick gave me. I liked the fact that it told other people whatwas going on.Using a scooter. Being a primary school teacher I was alwaysaware of the value of walking to school. Consequently I wasdetermined to walk my own children to school and homeagain. When this noble determination became physicallytoo hard for me I resolved to continue on a scooter. Inretrospect this was indeed a noble decision as I’m sure itsped up my inability to walk any huge distance. However,my scooter has enabled me to continue the family shoppingand attend many social events independently of anyoneneeding to push me in a wheelchair. It has also proved tobe a huge benefit on family holidays as the endless gearof childhood can be carried around in Mum’s scooter.Incidentally, the novelty of riding on Mum’s scooter woreoff fairly quickly.Giving up work. As I have mentioned my paid employmentwas primary school teaching which is a very physical job.However giving up work was more a decision of personalpriorities than physical ability. I was lucky my husbandand I had the foresight to pay off the house and to ridourselves of financial burden before having children, adecision made before the advent of MS. Consequentlywhen I decided not to go back to work after beingdiagnosed and while I was still on maternity leave didnot leave us destitute. Having said that, it did mean therewas much scrimping and saving and doing without. Ofcourse this decision was the cause of financial assessmentsbeing made regarding things like life insurance.Giving up work also led to a quandary for me as I couldno longer say “I am a teacher.” This fact has taken years tocompletely gel in my head as I and others have gone fromknowing me as “Trudy Fay: teacher” to “Trudy Fay”.Stopping driving. This is a decision I made independentlydue to cognitive problems when, for example, I couldn’tjudge distances or speeds as well as I used to. The decisionwas made while my children were still at primary schoolDecisions,Decisions,Decisionsand in the thick of out-of-school activities. However I felt Iwas not driving safely and often had the children in the car.As my boy passed into high school he was catching trainsand buses which bred in him a certain independence. Ofcourse it also made my husband’s life harder as he wasthe sole ‘runner’ in these years. At this time I also learnt tomake use of maxi-taxis when it was important that I waspresent at an event. The guilt I felt at not being able to runmy kids around could quickly be negated by the thoughtthat many kids in the world are doing it tougher. We arelucky enough to live in the old fashioned suburb of MtHawthorn where shops, the post office, the bank, etc., areeasily accessible on the scooter, and I have become quite atrend-setter with my red scooter popping up amongst thepopulation.The decisions you will make will be at different points inyour life’s journey, but will probably be as difficult for youas mine were for me. Now that my children are spreadingtheir wings as young adults I am pleased to be able toreflect back through the years and I hope that the decisionsI made along the way were the right ones for the time.Positive ReinforcementBy Trudi FayOf course I knew about positive reinforcement, beinga teacher of the ‘80’s and a parent of the ‘90’s but I hadnot seen it used so eloquently for a long time as I didthe other night.We were sitting on a ‘disabled persons’ rostrum beforewhat turned out to be a very exciting fireworks display.Near me was a teenaged girl with Downs Syndromewho rocked constantly.Rock rock rock.This is the rarely discussed down side to ‘disabledseating’.Rock rock rock.I have shared a concert at the concert hall with agentleman on a ventilator.Rock rock rock.I have sat in the ‘disabled seats’ at the Regal which aretucked away in the back, in the dark.Rock rock rock.“Trudi that girl near you”I thought “Oh no, what’s coming?”Rock rock rock.“Tell her I love how she’s done her hair.”Well done Penny!Then came a three minute conversation about howtricky plaits are to do “especially on other people”commented her carer.No it didn’t stop her rocking but she knew and her carerknew ......that we knew how bloody annoying her ticwas.Rock rock rock.RAC Wheels2gomembership.RAC offers a service for those using mobility devices suchas manual and electric wheelchairs. Wheels2go provides24 hour roadside assistance to members of this serviceand if they are unable to get you mobile again, they canarrange a taxi or call a carer, family member or friend onyour behalf.In most cases, a Patrol is able to replace a flat battery orflat tyre, provided that you have a spare one on hand.Patrols do not carry supplies specific to mobility devices sowhere possible, the RAC encourage you to carry your ownpuncture repair kit, spare tyre or tube, and have access toa spare usable battery It is important that you are able totransfer safely out of the mobility device on your own orhave a friend or carer available to assist in the case that thePatrol needs to work on it.If the Patrol is unable to assist in the breakdownsituation, they can help to arrange a taxi. Your Wheels2gomembership entitles you to five taxi trips a year valued atup to $55 per trip, to a total of no more than $275 for themembership year.For a limited time members will only need to pay the annualmembership fee of just $45. As a special introductory offerthe $20 joining fee for Wheels2go will be waived until 31 May2013. If you already have RAC membership for automobileroadside assistance and wish to have Wheels2go, you willneed to take out Wheels2go membership separately.If you have any further questions regarding this serviceplease call the RAC on 13 17 03. Make sure you also askabout the RAC member benefits you receive with thismembership.CLIMB CLIMB 1103 1103 STEPS STEPS TO TO THE THE TOP TOP OF OF CENTRAL PARK PARKCLIMB 1103 STEPS TO THE TOP OF CENTRAL PARKWith With every every step, step, you you can can help help thousands of ofWestern With every Australians step, you can living living help with thousands with MS. MS. Call of CallWestern Australians living with MS. Call6454 6454 3131 3131 or or register at at StepUpForMS.org.au6454 3131 or register at StepUpForMS.org.auSUNDAY 21ST APRIL 2013SUNDAY 21ST APRIL 2013MS Society Western Australia 28 Summer 2012 Summer 201229MS Society Western Australia

MS COMMUNITYMS COMMUNITYBunbury OutreachBy Lynda WhittonWilson OutreachBy Nicola RyanSouthside OutreachBy Angie WallaceHi everyone and we hope you all had a safe and happyChristmas break.We have certainly started our year off with a splash, literally.We have recommenced our sailing days, and the first forthe season was, in a word, “perfect”. After the sail we allenjoyed morning tea, watching for the turtles that Sharonhad reported seeing just the day before.More water Bunbury held their first Swim for MS. The groupand the Perth events team feverously organised sponsorsand prizes. There was a range of teams. We had MultipleSwimmers, as well as Turtles, a few Mad Swimmers, aViolet, Sam’s Swimmers, a Water Displacement Engineer, a Goodstart, Aquarians and even a few Walruses’ so theday ended up being, if nothing else, a clash of the Titian’s.The pool was buzzing from 7am and the first spot prizewent to a well-deserved “Turtle.” Just try to picture her!The prize table looked great Mr John Castrilli (MLA) cometo open the swim; he has an affinity with the MSWA andwas greatly involved in our Treendale project. As the dayprogressed the swimmers went from mad dash to steadyas we go. All participants said they enjoyed their day inspite of knowing how they would feel the next day. Ouryoungest swimmer Chloe, swimming in the Mad Whitton’swith her aunty Claire who has MS, and our oldest Marie(89) who was swimming for the Bunbury Outreach GroupMultiple Swimmers, both showed us how it is done! Weare very proud of them. There were a lot of people there tobe proud of and I cannot go without mentioning our staffin Bunbury. I think their participation in our swim sets thebar for all other swims. We had Alison (physio) & Nimisha(nurse) being Treendale Turtles alongside the staff ofTreendale Gardens. Later in the day we had Sue Shaplandmake a splash for the Turtles. We had Leonie looking swishin her retro swim cap, (quite a sight to see), for the MultipleSwimmers. Our two masseuses Chereen and Kylie were onhand to give a body rub to tired muscles. All of this wastime given freely. What a bunch to be proud of.Now the best for last: we raised $55,864. What an effort.Yeehaw!!!As the saying goes; a good day was had by all.We are running our exercise groups with Alison again thisyear, so anyone interested please contact her at the officefor all the details. Alison is so excited with her new ‘toys’that have been purchased, we will all be trim, taut andterrific by the end of the year.Also Nimisha and Harriet are available to see to yournursing needs. Please phone the office on 97912472 for anappointment with them or Alison for physio.We have our masseuses’ working hard and a couple ofvolunteers which means everyone can get pampered!The beginning of 2013 has proven to be a very busy one forMembers attending Wilson Outreach group. We celebrated“Australia Day” by dressing in our favourite “Aussie” styleclothes; as the photos show Activities Officer Gillian andMember Annette did so wonderfully.Member focused activities in Resource are provided byOccupational Therapy assistant Emma on Wednesdayand Thursday mornings; these have included Aboriginalart which Nick and Emma are trying in the photo.Cake decorating for Valentine’s Day proved to be verypopular with many Members taking home gifts for theirsweethearts. February saw the beach come to Wilson witha ‘home-made’ version for Members to enjoy without therisk of sunburn or flies!The beach theme saw Members participate in activitiessuch as making a beach collage, sampling home-mademocktails and fruit smoothies and getting into the spirit ofthe day as Member Debbie shows with her sunnies at our“inside beach”.Thanks to everyone for being such willing participants thismonth in everything we have engaged in. We are lookingforward to the rest of the year being just as “ACTIVE” andof course just as much fun.Our staff’s talent continues to amaze us! The dance routinesperformed for our Christmas party were hilarious! Dressedin “ridiculous” outfits they pranced around the stage topopular songs. Good fun for all, ladies... lots of laughs!We welcomed two new members recently – Jenny andMaree. We hope you find us a fun group to be with. Oneof our members, “smiling” Judy, has moved to Bunbury.We miss you very much. All the best!The Outreach group is still down an assistant-physio and asecond masseur. Delinda works very hard trying to fit usall in for massages and has now added Tuesday morningsto her regular Thursday and Friday sessions. We all loveyour massages, Delinda!Angie and John recently spent 4 fabulous weeks with familyand friends in Sydney and Canberra. They were there onthe day that Sydney had its hottest-ever temperature –45.8C (with humidity) Whew! Ron and Barry are once againin respite in Treendale, full of praise for the new facilities.Our Wednesday craft group is always on the look-out formembers to join in – no skills required! Just come along toSouthside from 9:00 to 12:00.Beechboro OutreachA big hello from all the groups running at Beechboro!After our four week break the Members enjoyed catchingup again with friends and much needed massages andphysiotherapy sessions.We celebrated patriotically with an Aussie Day BBQ withmembers dressing up and even getting some temporaryink. The ladies loved the chocolate making for Valentine’sDay with a hand made present to take home for someonespecial. The highlight was definitely the spoon licking atthe end! Like Wilson we joined in the ‘A Day at the Beach’theme by holding our own Beach Party and savouring adelicious Fish & Chip lunch. The groups are looking forwardto some cooler weather and an outing from the centre.HELP IS ALWAYS AT HANDCarer’s are often very good at looking after the needs of others and not sogood at looking after their own physical and emotional health. As a result,Carer’s WA was set up in order to help improve the lives of the estimated250 000 family Carer’s living in Western Australia. Carer’s WA is a nonprofitcommunity based organisation whose role is to work in partnershipwith carer’s, people with care and support needs, health professionals,service providers, government and the wider community.For more information, view their website atwww.carerswa.asn.auor contact them on 1300 CARERS (1300 227 377)MS Society Western Australia 30 Summer 2012 Summer 201231MS Society Western Australia

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Focus. Delivery.248 Oxford Street, Leederville WA 6007 | Fax: (08) 9443 4264 | Email: settlements@irdi.com.auTo reserve your book today contact the MS Society of WAon (08) 6454 3122 | harry.singh@mswa.org.au or go onlineto www.mswa.org.au/entertainmentTHE MS MS SOCIETY BRINGSYOU SHOP RITETHE THE FREE FREE DISCOUNT BUYING SERVICE EXCLUSIVE TO TO TO MEMBERS SHOP SHOP RITE RITE ALSO ALSO OFFERS:OFFERS:Vehicle Vehicle Purchasing Purchasing Service Service - in - in the - the in market the market for for a for new a new a car? new car? Our car? 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