Inside This Issue Research Grants Tai Chi & Parkinson’S Walking & Balance Unity Walk & Run

Stand by Me

Inside this issue Research Grants Tai chi & Parkinson’s Walking & balance Unity Walk & Run

+ all the regular contributors

Parkinson’s NSW Inc Newsletter. Issue 117, Summer ISSN 1839-0269 $13 million in community contributions in NSW/ACT

Bendigo Bank’s NSW and ACT network of branches have contributed more than $13 million to support local community groups, clubs and not-for-profit organisations.

And it’s all made possible by local people reach the significant milestone of $80 million making a choice about where the profit from in contributions to their communities. their banking goes. So make a difference – to your own banking It’s inspiring to think that contributions from and your community. Call into your local our NSW and ACT branches has helped branch or phone 1300 BENDIGO. Bendigo Bank’s national network of branches

Proud sponsor of 2012 Parkinsons Unity Walk

Bendigo and Adelaide Bank Limited. ABN 11 068 049 178 AFSL 237879. (S42153) (09/12)

www.bendigobank.com.au CONTENTS $13 million Carers Quilt page 3 From the President page 4 in community contributions From the CEO page 5 Research. Muscle power training page 6 Research. Copper changes in Parkinson’s Disease page 7 Research. The role of lipid in α-synuclein pathology page 8 in NSW/ACT From the CEO, Parkinson‘s Australia page 9 Walking & Balance in Parkinson‘s page 10 Tai chi in balance & falls reduction page 11 An extraordinary day - Unity Walk & Fun Run page 12-13 The James Parkinson Society Bequest L unch page 14 Bendigo Bank’s NSW and ACT network of branches have Toastmasters for Parkinson‘s page 15 On the Groupvine page 16-17 contributed more than $13 million to support local community Pancakes for Parkinson‘s & other fundraising page 18-19 The results are in page 20 groups, clubs and not-for-profit organisations. Donations page 21 What‘s on page 23 Carer’s Quilt.

And it’s all made possible by local people reach the significant milestone of $80 million This quilt has lovingly been put together by a making a choice about where the profit from in contributions to their communities. number of Carers of people living with Parkinson’s or Parkinsonism within the Shoalhaven area. their banking goes. So make a difference – to your own banking The Carers Quilt was part of a small project for carers to recognise the importance of taking It’s inspiring to think that contributions from and your community. Call into your local the time out from their extremely busy lives. Joining a carer’s support group is one way to our NSW and ACT branches has helped branch or phone 1300 BENDIGO. fulfil some of these needs. There are two Carers Bendigo Bank’s national network of branches of People with Parkinson’s, Parkinsonism and Parkinson’s Plus Syndromes Support Groups within the Shoalhaven, in the Nowra and Ulladulla areas. The support groups consist of carers who join together to give and get support and assistance in coping with common challenges in dealing with Parkinson’s, by sharing their experi- Proud sponsor of 2012 Parkinsons Unity Walk ences and providing support for each other.

If you would like more information on these support groups, please contact Marilia Pereira, Shoalhaven Neurological Nurse Educator, on 44246341 or 0448881669.

Bendigo and Adelaide Bank Limited. ABN 11 068 049 178 AFSL 237879. (S42153) (09/12) www.bendigobank.com.au 2012 Summer 117, Issue Newsletter. Inc NSW Parkinson’s 3 FROM THE PRESIDENT

I have two issues to more commonly, internationally. I have Board Members noticed advertisements next to at least mention in this Stand By Me. one Support Group web page link. That is a problem because, although this area of Chris Davis, President Firstly, the campaign to have PD nurses treatment holds great promise, it is not, to John Hassett, Vice President available around NSW is not going to be the best of my knowledge, mature enough Phil Maundrell, Treasurer an easy one, but it’s such a logical develop- to be offered to patients on a routine basis. Graham Dawkins, Secretary ment for all concerned; we simply cannot Undergoing unproven therapies risks, at Samuel Chu afford to back off. As spelled out in previous best, very uncertain benefits and, at worst, Colin Hall*,Associate Director correspondence, the new structure to bring serious problems. I appreciate that people Finance Macquarie Bank primary care into the community is centred in the advanced stages of Parkinson’s can Vera Heil on Medicare Locals (ML), of which there are be desperate for any possible relief from Andrew Kaxzor, Director to be 18 in NSW. Each Medicare Local has its symptoms; so the gamble may seem worth of Operations (COO) IBM own structure and priorities, based on the taking. I fear the odds are too long, though, needs of the local community. That means so I urge anyone contemplating stem cell or Assoc Prof Simon Lewis we have to interact at the local level – match- gene therapy to consult a neurologist first. John Silk OAM ing each of our Support Groups to the ML In my book, there are some warning signs: Rebecca Silk in its area. Communicating the needs of the many glowing testimonies; suggestions Lorna White* Parkinson’s community to each ML is certain- that the therapy can be used for a range of Andrew Whitton ly do-able, especially in view of the energy disease conditions; and cost of treatment and passion of Support Group leaders. which is significant, but just within reach for * new members many patients. What people should appreci- The next, much larger, challenge will be to ate is that the many PD advocacy organisa- help find the funds to put nurses out in the tions around the world follow all possible community. The funding model is complex therapies with great interest, so any positive and, to a degree, unique to each ML; so our development will be announced widely. task will be to collaborate with ML boards and to pursue every possible avenue for the To end the year on a positive, note: best necessary money. Given the chief source wishes for the festive season and we will all of funds for MLs is federal, coordination work together to make 2013 a year in which among the individual PD organisations the Parkinson’s community is able to live well across Australia will be necessary too. We’ll and to face PD with renewed confidence. keep you posted but, if you are keen to play an active role, please contact our office.

The other issue to mention is that there is a lot of promotion about for stem cell and gene therapy, offered both locally and, Chris Davis Margi Edmondson Penny Mawer Crystal JacobsCrystal Movsessian Shushann Lois Finn worked inHumanResources. to usfrom South Africa where she Fundraising Team. She hascome JacobsCrystal hasjoinedtheAdmin/ fice onMonday’s for counselling. will beavailable Ryde inourNorth of- be attending theConcord Clinic. She Clinic at War Memorial Hospital andwill establishing theBondiLionsParkinson’s Counselling Team. Shushann willbe Shushann Movsessian hasjoinedthe Penny isanoccupational therapist. are from anursing background while in health care. Both Margi andLois Team. Allhave awealth experience of Mawer have alljoinedtheInfoLine Margi Edmondson, Lois Finn andPenny has asocial welfare background. Group Coordinator. Like Trish, Michelle Michelle Turner willournew Support to Trish inherwell earned retirement! Groups throughout NSW. Our best wishes enthusiastically working with ourSupport Parkinson’s NSW after eightyears of Morgan, hasdecidedto retire from GroupOur Support Coordinator, Trish Staff New 800 644 189 to make anappointment. please call ourFreecall InfoLine on1 Movsessian willbeavailable onTuesday’s, Memorial Hospital, Waverly. Shushann we willprovide acounselling service at War theBondiLion’s, of the financialsupport for theEastern Suburbs Sydney. of With announce abrand new counselling service It iswith delightthat we are ableto War Memorial Hospital FROM THE

CEO program to commence inFeb/March 2013. you would like to register for thetraining Please call theInfoLine 1800 644 189 if communication anddiversional therapy. information onParkinson’s disease, This training program will include bi-lingual, Groups. andmembers Support of community targeting those whoare will bedrawn from theParkinson’s in residential care facilities. The volunteers program for peoplehousebound orliving Program. This program isanoutreach initiative -Volunteers Parkinson’s Visiting Charitable Foundation for anew throughfunding theAustralian Chinese Parkinson’s NSW hasreceived New Volunteers Program Miriam Dixon Parkinson’s NSW with new initiatives. look forward to anexciting 2013 at Newand awonderful Year! We Wishing everyone Season’s Greetings specialist nurses inMedicare Locals. inestablishingfunding and State Governments for this We continue to lobby both theFederal we are more hopeful willcome onboard. neurological nurse within theirarea and Locals to employ aspecialist tentative plansfor two regional Medicare neurological nurse. There are each Medicare Local employ aspecialist have embraced ourcampaign to have A bigthankyou to ourmembers who Postcards Campaign

5 Parkinson’s NSW Inc Newsletter. Issue 117, Summer 2012 The exercise machine in action Research Grants Is an innovative sessions. There are still a dozen people continuing to record falls for muscle power training another few months. Participants program an effective were from the St George/Sutherland, Parramatta/Dundas, Ultimo and exercise intervention in Bankstown support groups, or Parkinson’s disease? other members of Parkinson’s NSW who volunteered for this project A/Prof Colleen Canning, after reading Stand By Me. The University of Sydney Ms Serene Paul, We wish to thank our enthusiastic The University of Sydney participants. We also wish to thank Parkinson’s NSW for funding and In February 2011, Parkinson’s NSW supporting this initiative. As well provided us with $59,892 in funds to as providing the required funds to conduct this project. The aim of the establish the project, they have project was to determine whether given valuable assistance with the benefits of muscle power recruitment by informing members training on improving muscle power, in the relevant areas about the study. muscle strength, walking speed and Trish Morgan deserves a special balance demonstrated in the older mention for her help in linking us general population can be gained to the various support groups. by people with Parkinson’s disease. Forty participants with Parkinson’s Preliminary analysis shows three disease took part in this three month months of power training (using training study, and recorded falls specially-designed power training for an additional three months. equipment) is effective and improves muscle power of the leg extensors Participants were randomly allocated by 15%. Participants also reported to one of two groups: One group power training improved their used specially-designed power- mobility. Data analysis for this project training equipment at the University will be completed early next year of Sydney in Lidcombe, and the when all participants have finished other group trained at home. their falls monitoring periods. We All 40 people with Parkinson’s will then submit this project for disease who took part in this study publication. A summary of results will have now completed their training be made available in Stand By Me. Research Institute of Victoria. David Finkelstein,Health Mental University, and Associate Professor Professor Julian Mercer, Deakin student, NeuRA,andcollaborators, NeuRA Assistant, Vanessa Krapp. Veronica Cottam, Research University of Technology, Sydney, Facility, Dr. DominicHare, European Synchrotron Radiation (NeuRA), Dr. Sylvain Bohic, ResearchNeuroscience Australia Katherine Davies PhDstudent. Key researchers are: Professor Kay Double(NeuRA). Investigator,Chief Associate activity. Ouraimfor 2011 was toidentify as reducedcopper-dependent enzyme nigra,aswellcell lossinthesubstantia model withreducedcopperlevels and test ourhypothesis we need amouse recreates Parkinson’s diseaseexactly. To humans. However, nomousemodel different aspectsofthedisease in Parkinson’s diseasewhich each recreate There aremany mousemodelsof mouse modelofParkinson’s disease. We plantotestourhypothesis usinga brain cellslessvulnerabletodamage. proteins tonormallevels andmake the ofthecopper-dependentthe activity in Parkinson’s diseasewould increase normalisation ofbraincopperlevels If thisisso,thenwe would expect that inthisvulnerablebrain region. observed progressive celldamageanddeath proteins, andthisiscontributingtothe copper-dependentsome ofthesevital of resulting inareductiontheactivity levels intheParkinson’s diseasebrainis nigracopper reduction insubstantia function correctly. Thus, we believe this cell healththatdependoncopperto There aremanyfor proteinsvital brain nigra. the cellsdie,calledsubstantia brain, specificallyintheregionwhere copper levels intheParkinson’s disease identified asignificantreductionin Parkinson’s disease.Recently, ourgroup neurodegenerative diseases,including also play aroleinothermorecommon that disrupted braincopperlevels may disease, andevidence now suggests including Menkes’ and Wilson’s devastating neurologicaldisorders, copper levels isimplicatedinrarebut known thatmajordisruption ofbrain brain development andfunction.Itis in thebrainisrequiredfor normal Thus, adelicatebalanceofcopper can alsocompromisebraincellhealth. toxic tobraincells,buttoolittle copper Too much copperinthebraincanbe Copper changes inParkinson’s disease: Implications for cell vulnerability

independent method, laserablation(LA) findings were confirmedusingasecond in ournovel mousemodel. These copper levels were significantlyreduced nigra MPTP mousemodel,substantia nigracopperlevelsin substantia inthe precision. While we found nochange nigrawithextremelysubstantia high measure copperlevels inthemouse This rareopportunity enabledusto European Synchrotron Radiation facility. facility inGrenoble,France, calledthe granted accesstouseaspecialised copper levels inthesemice. We were analyses nigra detailed ofsubstantia Over thepastyear we have completed then setaboutvalidating thismodel. ideal modelfor ourinvestigation. We nigra; an and celllossinthesubstantia a mousemodelwithreducedcopper in thesemicewiththeaimofproducing copper. We usedtheneurotoxin MPTP these micetohave brain reducedtotal pump copperintothebrain,causing encodes aproteinthatisthoughtto inagenethat model hasamutation Parkinson’s disease. This novel mouse model, butalsoanovel mousemodelof the commonlyusedMPTPmouse designed ourstudy toincludenotonly disease for ourinvestigation, we appropriate mousemodelofParkinson’s our hypothesis in.So,toidentify an totest mouse modelisnotsuitable to controlmice,suggestingthatthis that copperlevels were notdifferent small groupofMPTPmiceandfound nigracopperlevelssubstantia ina study,preliminary we investigated the Parkinson’s diseasebrain.Ina nigrathatwethe substantia seein that recreatesthebraincelllossin the MPTPmodel.isaneurotoxin model ofParkinson’s diseaseiscalled The mostcommonlyusedmouse and validate such model. asuitable in braincopperlevels andexamine the functionaleffects ofthereduction copper-dependent proteinstoassess ofvariouswill soonlookattheactivity In thenextofthisprojectwe stage in theParkinson’s diseasebrain. diminished braincellactivity, asseen nigra, aswell asbraincellloss, and reduced copperlevels inthesubstantia soon know whetherournovel modelhas andwill measure ofbraincellactivity), dopaminelevelsnigra, andstriatal (a correct reducedlevels ofbrain copper. for Parkinson’s disease which aim to development ofnovel therapeutic targets Parkinson’s diseaseandmay leadtothe specific braincellsarevulnerable in lead toabetter ofwhy understanding death. Ultimately, ourprojectwill activities, andreducebraincell levels, andcopper-dependent protein with coppercanrestorebrain that demonstratesupplementation model for subsequentexperiments activities. We willusethismouse reduced copper-dependent protein nigracelldeath and with substantia of reducedbraincopperassociated ofamouse model the establishment The outcomeofthisprojectwillbe human braininParkinson’s disease. this matches withwhatwe seeinthe dopaminergic now intheprocessof MPTP modelisnotappropriate. We are hypothesis in,andconfirming thatthe totestour mouse modelissuitable nigracopperlevels,substantia ournovel suggestingthat,withregardsto data have provided uswithrobust,reliable methods These twocomplementary regional, level inthemousebrain. to measurecopperlevels atthelarger, ICP-MS, which useddifferent principles cell loss in the substantia cell lossinthesubstantia investigating

7 Parkinson’s NSW Inc Newsletter. Issue 117, Summer 2012 Dr Scott Kim Research Grants Dr Scott Kim Neuroscience Research Australia The role of lipid in α-synuclein pathology Firstly, I would like to thank Parkinson’s processes of Parkinson’s disease, risk for Parkinson’s disease, provide new NSW for the generous Unity Walk grant although loss of ABCA5 in mice evidence indicating that the neuronal in 2011. This grant has allowed us to replicated a lysosomal storage disorder sphingomyelin level may be important undertake research in a new developing similar to Gaucher’s disease, which is in the α-synuclein neurodegenerative area of Parkinson’s disease research – the caused by GBA mutations. Heterozygous process in Parkinson’s disease. role of lipid in -synuclein pathology. GBA mutations are the most common α Our findings have been published as genetic risk factor for Parkinson’s disease. Our study has produced data revealing a peer-reviewed paper in a leading new insights into how lipid may We therefore proposed a hypothesis international journal and also reported regulate α-synuclein production in that ABCA5 functions as a lipid as a poster presentation at the neuron. Our findings have now been transporter in neuron and regulates Australian Neuroscience Society published as a peer-reviewed paper the α-synuclein neurodegenerative conference at the Gold Coast on in a leading international journal, process in Parkinson’s disease. 29 January –1 February 2012. the Journal of Parkinson’s Disease Our principal aims of this project were: to The kind support from Parkinson’s NSW (Kim and Halliday 2012 Changes in determine the impact of sphingomyelin has been acknowledged in both the sphingomyelin level affect alpha- (a major lipid component of the neuron paper and in the poster presentation. synuclein and ABCA5 expression. Journal plasma membrane) on α-synuclein and of Parkinson’s Disease 2:41–46). ABCA5 expression; and to determine Although the human brain is extremely whether the expression of ABCA5 is rich in lipids (fats), such as cholesterol altered in Parkinson’s disease brain. and sphingomyelin, very little is known We have found that when neurons about their role in the pathological were treated with sphingomyelin the processes of Parkinson’s disease. expression of both α-synuclein and Recently, we and others have identified ABCA5 was significantly increased, a group of proteins called ATP-binding indicating that α-synuclein production cassette (ABC) transporters that regulate is intrinsically linked to the neuronal lipids in the brain and a number of sphingomyelin level. We also measured neurodegenerative disease processes. the level of ABCA5 expression in However, the role of ABC transporters Parkinson’s disease brains and age in the neurodegenerative processes of and gender-matched control brains. Parkinson’s disease was fundamentally The expression of ABCA5 in Parkinson’s unknown. A recent paper indicated that disease brains was significantly elevated one member of the ABC transporter compared to the control brains, possibly family, ABCA5, was genetically as a protective response to the disease. associated with a reduced risk for Parkinson’s disease. Until now virtually These new data, along with the fact that nothing was known about the functional the sphingomyelin level is elevated in role of ABCA5 in the pathological Parkinson’s disease brain and that ABCA5 is genetically associated with a reduced FROM THE CEO, PARKINSON’S AUSTRALIA The past few months have been busy with John McDonald and the Board of many different issues occupying my time. Parkinson’s WA. It was an enjoyable, In relation to our national focus on if brief, visit. I have now visitied promoting the need for more Parkinson’s all of the mainland states. nurses around Australia, I met with, This month we held our Annual General and addressed, the Executive of the Meeting and our Annual Report will Movement Disorders Faculty of the be available on our website soon. Australian Nursing Association. They My best wishes to all for strongly support our approach and Christmas and the New Year. will actively lobby for the cause. On a beautiful Sunday in late August, with my wife, daughter, son in law and two gorgeous granddaughters, I joined over 400 supporters of Parkinson’s in the ACT Unity Walk. It was a great day. Daryl Smeaton I continue to be involved in preparations for the 3rd World Parkinson Congress in Montreal, Canada, from 1 to 4 October 2013. This is a wonderful opportunity for us to promote awareness of the needs of people with Parkinson’s on a world wide basis. The National President, John Bird, and I visited Perth to meet with Brenda Matthews and her staff and

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9 receptors of these other neurotransmitters neurotransmitters other of these receptors under investigation. currently are difficulties also may walking onset Later undergone who have in patients occur of the (DBS) stimulation deep brain common nucleus (the most subthalamic groups other this reason, For of DBS). form as the such the brain, within of neurons which has nucleus, pedunculopontine been have walking, in mediating a role results. mixed with DBS for targeted of of treatment the mainstay Currently and balance disordered resistant medication is rehabilitation. disease in Parkinson’s walking almost no intervention with Compared program or balance exercise graded any These be beneficial. to has been shown a patient’s to be tailored can programs of a under the guidance specific problems, specialist or rehabilitation physiotherapist disease. in Parkinson’s a specific interest with

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www.TabTimer.com.au 1300 TAB TIMER (1300 822 846) 1300 www.TabTimer.com.au & BALANCE & Walking In early Parkinson’s disease walking speed walking disease Parkinson’s early In step of each and the size be reduced may be this may often, be smaller but may the speed of increasing by compensated be a this may Accompanying step. each where ‘festination’ called of walking pattern in an attempt made are small steps rapid between of gravity the centre keep to is involuntarily while the trunk the feet patterns walking These forward. stooped least at medication, to respond often of the disease years in the early (FOG) of gait’ ‘freezing and falls both on, Later to unresponsive major issues, become may a major are Falls treatment. medical current Dr Paul Clouston, Neurologist Neurologist Clouston, Paul Dr balance and walking Impaired of the major therapeutic two are disease. in Parkinson’s challenges Southern Highlands support group—walking with poles

Tai chi for balance & falls reduction

tai chi group also contact details of physiotherapists showed a lower rate in your local area with an interest in of falls compared to neurology or aged care (gerontology). the stretching group. To access falls prevention/exercise No major adverse classes (which generally at not events were reported Recent research published specifically designed for people for any exercise group, although in the prestigious with PD, but which may be there were infrequent reports of falls appropriate for some people with international New England during exercise, muscle soreness or PD, go to the following websites: Journal of Medicine shows pain and dizziness or feeling faint. www.activeandhealthy.nsw.gov.au that Tai chi improves This study adds further evidence to www.heartmoves.heartfoundation.org.au/ balance and mobility and support the potential for people with PD to improve balance by practicing If you require further assistance in reduces falls in people exercises which deliberately challenge accessing physiotherapy services, please with mild to moderate balance, ie, exercise while standing, call the infoline on 1800 644 189. stepping and walking encouraging Parkinson’s disease. the person to work close to their This large randomised controlled balance limit. In addition, this is the Summary of published paper: trial conducted by Fuzhong Li and first study to show that exercises Li, F et al (2012) Tai chi and postural colleagues at the Oregon Research which challenge balance reduce stability in patients with Parkinson’s Institute (USA) included 195 people the likelihood of falling in PD. disease. N Engl J Med 336;6:512-519 with mild to moderate PD. Participants It should be noted that the majority were randomly assigned to one of three of participants in this study were in Summary by: exercise types: tai chi exercise, resistance the earlier stages of the disease, so it Associate Professor Colleen Canning exercise and stretching exercise. Tai chi cannot be concluded that exercises The University of Sydney exercises are designed to progressively that challenge balance will have challenge balance and these exercises the same effect on those with more were performed while standing, stepping advanced disease. People with PD and walking. Resistance exercise is are advised to seek advice from designed to increase strength in leg a physiotherapist to ensure that muscles using weighted vests and exercises performed are both safe ankle weights to progressively increase and effective, and that the exercise resistance to movement, and these program is updated on a regular basis. exercises were performed in standing. Stretching exercises included low- To access physiotherapy services: intensity breathing, flexibility and • Public or private hospitals – enquire relaxation performed in sitting. All whether the physiotherapy outpatients groups participated in 60 minute department offers services for people exercise sessions, twice and week for six with neurological conditions months and all exercise sessions were conducted in a supervised group format. • Private physiotherapists. Contact the Australian Physiotherapy Association The tai chi group made the largest www.physiotherapy.asn.au and click improvements in balance compared on the red Find a Physio button on to the other two exercise groups. The the right of screen) and request the Parkinson’s NSW Inc Newsletter. Issue 117, Summer 2012 Summer 117, Issue Newsletter. Inc NSW Parkinson’s

11 AN EXTRAORDINARY DAY

The 5th Anniversary Parkinson’s Cross Country Championships. Group was the winner, raising NSW Unity Walk & Run, held $18 260. Everyone who raised Also making a welcome on Sunday August 26th, was $100 and more won a ticket to appearance were the spectacular once again a great success. a prize draw. The winner, Anita new T-shirts, which made a stirring Byrne, earned 10 tickets and took Since its inception five years sea of purple in the crowd. home a Samsung Galaxy Tab 2, ago, this event has become an Entertainment was provided by plus a financial planning session eagerly awaited fixture on the this year’s Talent Development courtesy of Bendigo Bank. sporting calendar, attracting Project graduates, while the growing numbers of participants, performance by David De Vito Top individual fundraisers Andrew fundraisers and sponsors. from Australia’s Got Talent and Karen Whitton raised more brought the audience to its feet! than $10,000 and will soon This year, total attendance was be on their way to Hayman almost 2 000, an increase of Sponsors include loyal major Island to enjoy their reward. more than 15% on the previous supporter Bendigo Bank, which Other invaluable support was best, with Walk numbers up 14% has supported the event for provided by fundraisers who and the Run attracting some of five years enabling Parkinson’s made more than $2 000 each – Australia’s elite athletes. Ben NSW to begin a Research Grant Coffs Harbour Banana Benders, St Lawrence, who represented program. Proceeds from the Walk Elise Norton, Lauren Warburton, Australia in the 10 000 metres at & Run helps finance researchers Simon Lewis, Natalie Anderson, the London Olympics, was the to understand, improve treatment Myra Chalmers, John Silk, Ben men’s winner; while the women’s and find a cure for Parkinson’s. Sprange, Bernie Atkinson Ella winner, Chloe Tighe, represented Of the team fundraisers, the Martin, Owen Streatfield, Robyn Australia at last year’s World St George/Sutherland Support Rota and Edwina Hughes. UNITY WALKUNITY &FunRun 13 Parkinson’s NSW Inc Newsletter. Issue 117, Summer 2012 of celebration and thanks to those who Parkinson’s NSW Council from 2006 The 6th Annual have left a bequest to Parkinson’s NSW to 2011 and continues to serve on Bequest Lunch and members who support the program. the Advisory Committee. Following Bequests insure we can look after people her induction, Kay said she made her was held on living with PD for generations to come. bequest to the association because she was aware of how much good a bequest 25th October, Guardian Funerals, Northern Suburbs to PNSW can make to the lives of people Crematorium and Memorial Gardens The Grand with Parkinson’s disease and she strongly at North Ryde are always generous supports the work of the association. Pittwater Room, sponsors of this event. They are North Ryde RSL, members of the Invocare Group who If you would like to find out more give generous financial support to of how you can leave a gift in your attended by 80 many community events like ours. will to Parkinsons NSW and/or need assistance with information or wording members of the Billie Wilde, a regular guest on many TV please feel free to speak with me in variety shows, entertained us. Billie was James Parkinson confidence, I am available to assist in in Jesus Christ Super Star with John any way. Knowing your memory will Farnham and a support act for Frank Society and staff. live on in the gratitude of strangers is Sinatra, Frankie Lane and Peter Allen. The 6th Annual Bequest certainly a contribution worth making. Lunch was held on 25th Associate Professor Kay Double, a Isabelle Clark – Bequest Officer October, The Grand neurochemist and Parkinson’s disease Pittwater Room, North researcher at the Sydney Medical School, e: [email protected] Ryde RSL, attended University of Sydney was inducted into m: 0403-324486 or telephone by 80 members of the the James Parkinsons Society by our the InfoLine 1800 644 189 James Parkinson Society President Chris Davis. Kay, a long time and staff. This is a day supporter of PNSW, was a member of

A/Prof Kay Double with Chris Davis

The Winston Churchill Memorial Trust Fellowships

2013 applications are now open.

These Fellowships support Australians to travel overseas to conduct a research project which will improve their contribution to the Australian community. Specifcially the Dr Dorothea Sandars Fellowship supports research into Parkinson’s disease.

Closing date: Wednesday 20 February 2013.

Application forms can be downloaded from www.churchilltrust.com. au

or contact the National Office on 1800 777 231. The James Parkinson Society Bequest Lunch Parkinson James The Accreditated TOASTMASTERS for PARKINSON’S

We are thrilled to introduce three enthusiastic people for our Toastmasters Accredited Speakers Program! This program mentors and trains Toastmasters and members of Parkinson’s NSW to raise awareness of Parkinson’s to the wider community. Lucky Joeng is the Chairperson for the Parkinson NSW Toastmasters Awareness Group. Lucky’s scientific and engineering background enables him to explain scientific publications and research to the general public in a concise, simple manner and is keen to provide mentorship in presentation skills and tips. Gloria Carter has been a professional singer, former President of Randwick- Botany Meals on Wheels and inaugural President of Kincoppal- Rose Bay Toastmasters. Her husband L to R Lucky, Gloria and Crystal has Parkinson’s, she has first hand

experience of living with Parkinson’s. infomation, contact the InfoL To register your interest and receive more north of Sydney or 45 minutes south of Newcastle. on the eastern foreshore of Lake Macquarie, just one hour Point Wolstoncroft Sport and Recreation Centre is located Gloria is passionate about raising awareness of Parkinson’s in the community and gaining more help Young / Working Age for all those affected by Parkinson’s. Parkinson’s Retreat Crystal Jacobs will be the point of contact for requests for presentations and she is writing to service clubs, 1-3 March 2013 encouraging them to take up the offer of a presentation on Parkinson’s.

If you would like to become a presenter ine or would like to nominate a venue for a presentation please contact Crystal at Parkinson’s NSW through our InfoLine 1800 644 189 or email [email protected]. Parkinson’s NSW Inc Newsletter. Issue 117, Summer 2012 Summer 117, Issue Newsletter. Inc NSW Parkinson’s 15 Bingara, Yamba, Nambucca Nepean, Eastern Suburbs, What a wonderful Valley and Kings Langley. Pittwater/Warringah, eight years it has New groups were formed Manning/Great Lakes, at Bega Valley, Myall/Tea Lower North Shore, been. There are Gardens, Ultimo, Narrabri, Tomaree and Illawarra so many faces Goulburn, Blue Mountains, North and South have been and San Remo. Some were serving their communities and memories. developed in more than for many years. Shoalhaven one location as Shoalhaven I have managed to visit Shakers at Nowra opened nearly all of you – with Shakers sent a support group in a rail trip to Cooma in me a letter of Ulladulla. A few groups September this year to closed, namely Canterbury, attend the Snowy/Monaro welcome on my Griffith, Muswellbrook, group. Unfortunately, Quirindi and Orange, Deniliquin/Finley was appointment in which closed in 2006 beyond my reach. February 2005. and re-opened in 2009. One of the most enjoyable Coalfields were the first to I flew to Albury, Parkes times has been the Bi- invite me to their meeting and Wagga Wagga and annual Support Group so I was happy to travel to to the far south coast to Leaders Meetings held at the Hunter Valley to meet Eurobodalla and Bega North Ryde. It is wonderful in the pub at Neath and Valley Support Groups. In to see members getting stay for lunch. This was the 2011 I flew with Deborah together. Great friendships start of my life with PNSW. England to Lismore to have been made and start the group and drove members keep in touch Highlights have been to Glen Innes to have with each other. The the first road trip to dinner with their members. Unity Walk has also been Tamworth where I learnt This year Miriam Dixon, a wonderful gathering people needed to book Deborah England and I place where I have met an appointment a month flew to Lismore and visited your extended families. in advance just to get a groups in Casino, Grafton script from the GP. From and Ballina. I took a week’s The Young Men’s Network there I went over the holiday in May this year to has been a success and Dorrigo to stay with Vera Broken Hill and was treated the Young Women (Tulip Heil and attend Coffs by the support group to a Belles) are supporting each Harbour support group wonderful experience. other by teleconferences, at the Catholic Club with Last month we drove email and Facebook. The members coming for a to Mudgee for a full day Central Coast Young Onset bistro lunch before the seminar organised by Group, aka ‘The Medusa meeting. I went up to the new Mid Western Club’, is enjoying its varied Casino to the support Support Group and social life. These groups group and the meeting attended by over 90 people are coming together with was put back an hour to including support groups the original Speeding allow for my driving time from Dubbo, Tamworth, Vibrations group who from Grafton, where I Narrabri and Cowra. meet for lunch on Sundays had stayed overnight. three or four times a year. Many support groups Chinatown Bi-Lingual have organised seminars I feel confident that Support Group started in including St George/ Michelle Turner brings a lot March 2005 and members Sutherland, Southern of skill and understanding of the board and other Highlands, Central Coast, to the role of Support support groups were there. Coffs Harbour, Goulburn, Group Coordinator and Newcastle, Coalfields, I know she will enjoy In my first year I also Tweed, Parkes and meeting you all. travelled to Yass via Port Macquarie. Others Bathurst and Cowra have hosted seminars Thank you for your and later in the year in the ‘Living Life with friendship and the happy visited coastal groups Parkinson’s” series. memories I take with me. at Newcastle, Nowra and Forster. There are our longest running support groups of In the metropolitan area Dundas/Parramatta and there was a need for Newcastle closely followed new groups at Liverpool, by Hornsby/Ku-ring-gai, St Bankstown, Blacktown, George/Sutherland, Central Manly/Mosman and Coast, Hawkesbury, Maroubra. Other groups Tamworth and Eurobodalla just started themselves which turned 20 this year. with the input of keen Other support groups like On the groupvine On leaders at Gunnedah, Macarthur, Castle Hill, On the groupvine Parkinson’s NSW welcomes Michelle Turner. Michelle is Parkinson’s NSW new Support Group Coordinator, replacing Trish who has retired. Michelle worked as a social welfare worker with neurology patients while at Royal North Shore Hospital. She has just begun in the Parkinson’s office working Monday to Thursday. Michelle believes support groups help people in many ways, enabling them to understand more about their condition and to share information and to support with one another. Miriam Dixon,Deborah England and Trish Morgan meet with Support In her first month, sharing this time Group Leaders from Ballina, Lismore, Tweed and Yamba with Trish, Michelle has met with the Bankstown, St George/Sutherland, Hornsby/Ku-ring-gai and the Coalfields Support Groups. She also met support group members at the Parkinson’s Awareness Seminar at State Parliament House and the Bequest Lunch. She said, “what was evident to me with every group was the warmth and the outstretched hand of friendship generated when members and carers come together. Groups are varied in size, but what seemed evident was all were busy with events and activities. I believe in the philosophy, aims, objectives, development and maintenance of support groups. By being or becoming Pat & Allan Johnson celebrating 20 years of Tamworth Support Group a support group member there are many positive aspects gained Parkinson’s NSW Support Groups for better health and well-being. Albury/Wodonga Support Group Goulburn Support Group Port Macquarie Support Group So far Parkinson’s NSW has shown itself Armidale Support Group Grafton Support Group San Remo Support Group Ballina (Northern Rivers) Gunnedah Support Group Shoalhaven/Nowra to be an impressive organisation, full of Support Group Hawkesbury Support Group Support Group dedicated, caring and skilled workers Bankstown Support Group Hornsby/Ku-ring-gai Shoalhaven/Ulladulla and I am proud to have been chosen Bathurst Support Group Support Group Support Group Bega Valley Support Group Illawarra North Support Group Snowy/Monaro Support Group to be part of this valuable group. I am Bingara Support Group Illawarra South Support Group Southern Highlands happy to be contacted at any time you Blacktown Support Group Kings Langley Support Group Support Group Blue Mountains Support Group Lismore Support Group Speeding Vibrations may have any queries, information to Broken Hill Support Group Lower North Shore Support Group share, concerns or just to have a chat.” Casino Support Group Support Group St George/Sutherland Castle Hill Support Group Macarthur Support Group Support Group You can contact Michelle by calling the Central Coast Support Group Manly/Mosman Support Group Tamworth Support Group Chinatown Bilingual Manning/Great Lakes The Medusa Club Parkinson’s NSW office or email Support Group Support Group Tomaree Peninsular [email protected] Coalfields Support Group Maroubra Support Group Support Group Coffs Harbour Support Group Mid Western Support Group Tweed Support Group Cowra Support Group Myall/Tea Gardens Support Group Ultimo Support Group Deniliquin Support Group Nambucca Valley Support Group Wagga Wagga Support Group Phone the InfoLine for your Dubbo Support Group Narrabri Support Group Working Age Men’s nearest Support Group Dundas/Parramatta Nepean Support Group Support Group Support Group Newcastle Support Group Yamba Support Group 1800 644 189 Eastern Suburbs Support Group Orange Support Group Yass Support Group Eurobodalla Support Group Parkes Support Group Young Women’s Support Fairfield/Liverpool Support Group Pittwater/Warringah Group (Tulip Belles) Glen Innes Support Group Support Group Parkinson’s NSW Inc Newsletter. Issue 117, Summer 2012 Summer 117, Issue Newsletter. Inc NSW Parkinson’s

17 Pancakes for Parkinson’s As part of our studies with valuable experience to Greens General Foods Pty Ltd. However, complement our education. the greater outcome was the number of at The University of An important landmark in the project times students came along and asked occurred on Wednesday October 17 questions about Parkinson’s disease Western Sydney (UWS), at the UWS Parramatta campus, where and left with a greater awareness of Hannah Sampang, we held a Pancakes for Parkinson’s the disease (and a pancake or two). event. This event raised awareness The final stage of our project will Katrina Willis and I have of Parkinson’s disease through the be to provide Parkinson’s NSW with taken on the Pancakes distribution of pamphlets and pens (the an online pamphlet with tips and latter a big hit amongst students), whilst instructions for other groups to for Parkinson’s project. raising funds for Parkinson’s NSW through host their very own Pancakes for the sale of pancakes and donations. Parkinson’s event and continue the This project is designed to create a In financial terms the event raised $115 fund raising and awareness efforts. means of sustainable fundraising for Parkinson’s NSW, a solid result which and awareness for Parkinson’s was greatly assisted by the kind donation By Jeffrey Ransom, on behalf of the NSW, whilst providing our group of pancake mix and maple syrup from UWS Pancakes for Parkinson’s team

Arnold Thomas and Becker, solicitors, have called an information meeting for sufferers of Parkinsons, restless legs or pitu- itary gland tumours and who were prescribed PERMAX, CABASER and DOSTINEX and suffered changed and abnormal behaviours. A class action has been commenced in the Federal Court claiming compensation for groups of such persons who have suffered loss or damage.

The Federal Court has ordered that information be provided to people who might be group members and has required that any person who is a group member and who does not The cooks wish to be bound by the result of this class action, must opt out of the proceeding by completing an opt out form BEFORE 15 FEBRUARY 2013.

With the assistance of the Salvation Army, Arnold Thomas and Becker have arranged for Mr. John Rowe, barrister, to explain the nature of the process, who may have claims, nature of the claims and answer questions.

WHERE: SALVATION ARMY 140 ELIZABETH STREET, SYDNEY. WHEN: 17 DECEMBER,2012 at 2PM

In attending this meeting you will incur no obligation and no cost. For more information contact Arnold Thomas and Becker at

www.arnoldthomasbecker.com.au, The cook waiting for the hungry hordes Telephone 1300 333 300 or (03)9614 1433. HOP HOP for Parkinson’s On Saturday, 15 September North Balgowlah Dance School hosted their 20th Anniversary Party.

All money raised was donated to Parkinson’s NSW. Teresa Geraghty, Principal of the School, generously organised the event and fundraising for Parkinson’s, inviting,g past and present students, and the local community. Paula Argy, a young mum with Parkinson’s, two girls Greta 12 and Mary 10, have been attending North Balgwolah Dance for more than eight years.

There was a HIP HOP class for everyone with a gold coin donation, cake stalls, jumping castle and face painting. Before the class started, Greta performed a solo HIP HOP dance. Paula and her girls set up a merchandise and information table. The day was a huge success L to R Paula Argy, Mary Argy age 10, Greta Argy Age 12, Geraghty, Principal Dance, raising $683.40 for Parkinson’s NSW Erin Geraghty age 6 support services and research The Golden Team On Sunday the 12th of August Parkinson’s NSW entered a team of 10 into the Golden Charities section of the City2Surf.

Our team of Sonya Gillies, Maria Boznovska, Jolyon Dare, Graham McDonald, Beatriz Martinez, Simon Lewis, Rosemary Lotorto, Sophie Jiang, Debora Harris & Katherine Peverell together exceeded our target of $20,000 and raised $23, 995. Well done and the money will be used towards extending the services we offer on the free InfoLine and counselling services to those suffering with PD, their families & carers.

The Parkinson’s cheer zone. The photograph shows the speed of the runners rather than the ability of the photographer. Parkinson’s NSW Inc Newsletter. Issue 117, Summer 2012 Summer 117, Issue Newsletter. Inc NSW Parkinson’s 19 The RESULTS are IN

People read Stand Most readers, 80% found by Me to keep up the layout easy to read with with the latest 20% of readers finding the 96%medical research layout good to read into Parkinson’s. an overwhelming. This is closely The most important followed by what is sections are, happening at Parkinson’s NSW 1. Research Updates, 2. Health/Symptom 90% Management OF OUR READERS 3. Personal Stories 55% of respondents read ARE OVER 55 Stand By Me only once On average, two people The Response was overwhelming read each issue of Stand By Me: the person living with Parkinson’s and their 95% partner or carer WHAT YOU LIKE Like to read the magazine in print

Readers said they like the large print and new layout. “The magazine is not too technical and written in lay terms.” It helped members feel they belonged within the Parkinson’s community, with personal stories helpful and encouraging. “You like learning what help is available and how different people cope.”

Many readers used the magazine as a way of keeping up with all aspects of Parkinson’s including medication, events and activities.

“The magazine is informative, interesting and well edited.” WHAT YOU might change

The majority of our readers are satisfied withStand By Me and had no dislikes. Some think the glossy paper makes it hard to read and they thought the cost of the production of the magazine was too costly and suggested the newsletter be in email format, while others wanted the newsletter more frequently

You want more regular recognition of fundraisers, activities and people. Overwhelmingly you want more information on research in Australia and overseas including the trials available.

Thank you for all you comments and we are working to incorporate your input. This is your magazine and we want it to reach and fulfil the needs of as many people as is possible. Donations Donations over $50 FY12 Glenn Moss John Pardoe Frank Kjeldsen Jim McDougall Janice Mossfield Devang Parikh Odysseas Klioufis Flora McDowell Ross Motbey John Park Joseph Lalor Ken & Mary McGovern Con Moustakas Frank Parker Violet Latty Joy McGrane Lesley Muir June Parker Leslie Law James Mcgrath Genelle Mullins Foola Parmax Jeffrey Ronald Lennon John McGregor J Murray Elizabeth Parsons Joan MacKenzie BF McInerney Mel Murray Alice Paton Filippo Marano Alan & Evelina McIntosh Steven Nagle Sue Patterson Ray Martin Geoff McIntosh Colin Nancarrow Malcolm Paynter Donald McGillivray G & A McIntyre Barbara Napoli John Peachey Hazel McGuren Donald McKay Gweneth Neely Sheila Peattie Helena Mesker Don McKennan Phil Nelson Tony & Dell Pedemont James Morgan Alison McKnight Jackie Ness Eion Pengilley Maria Murarotto Cheryl McManus Iris Neuendorf Imelda Penny John O’Connor Pam McMillan Joan Newell Mary Perrottet Miriam Oliver Norma McMorran Melissa Newman Beryn Petersen Anthony Penny Rob McNeill Chuan Hee Ng Doreen Petty Neville Picton Peter McPherson Margaret Nicholson Peter Rath John Melano G Nickson In Memorium Barry Rawlinson Kellie Meredith L Nicolis Patricia Albury John Robertson John Meredith-Jones Mario Nicomede Yiannoulla Alexandrou Dave Saul Duncan Michaelis Maria Niflis Yvonne Ashton Barry Scott Shirley Michell Douglas Nolan Todd Barton Bill Smith Jonas Milligan Anthony Norman Gwen Benton Thea Spartalis Robyn Milne Emily Norman Hazel Bevan John Allen Stormon Alan Milston Peter Norman Allan Bible Gordon Swan Joshua Milston Les Norris Don Bland David Taylor Daphne Missen Julie Norton James Bunyan Rosemary Thompson H & T Mitchell Audrey Nutman Giuseppe Calcagni Nicholi Tokmakoff Isabel Mitchell Colleen O’Brien Violet Camilleri Markella Townsend M S Mitchell Teddy O’Brien Rina Casali David Townsend Rick Mitchell John & Wendy O’Connell Mark Anthony Connors George Turner Geoff Monk Judith O’Connor John Daniell-Webb Adrianus Veenhuis Tony Moon Michael O’Connor Ron Davidson Rex Waghorn Angie Moonen Tracey O’Connor Harvey Edwards Lee Walker Beatrice Mooney Theresa O’Hagan Joseph Facchin Keith Waller Melissa Mooney Kerry O’Keefe Frank Fox Edwin Warby David Moore Helen O’Loughlin Russell Fuller Lex Webb Dawn Moore M & F O’Neill John Giles Dean Moran Peter Ong Chris Gillies Celebration Jens-Peter Moreitz Gene Oo Peter Gilmore 80th Birthday of Gordon Boulous A Morgan Jan Osborn Lou Harwin 80th Birthday of Wally Budd Dennis Morgan Andrew O’Shea Eileen Heaney 80th Birthday of Marie Procter Jonathan Morgan Geoffrey O Oxley Moira Hodges 50th Wedding Anniversary Kay Morgan Chandrasekhara Padmakumar Ros Holmes of Rebecca & John Silk Trish Morgan Jim & Eliane Panogiotopoulos Gerald Hull-Moody 50th Wedding Anniversary Keith Morley Steve & Jennie Panozzo Lester James of Judi & Allan Simpson M Mortimer George & Daphne Papapandos Warren Jesson 60th Wedding Anniversay Antonia Moskos Phil Papworth Alexander Jimenez of Lea & Leon Portrate Mark Moskow Andrew Pardoe Thelma Keane Parkinson’s NSW would like to acknowledge the support received from Eventide Homes over many years.

Photo. John and Becky Silk receiving the cheque from members of the Eventide Board.

Parkinson’s NSW Inc Newsletter. Issue 117, Summer 2012 Summer 117, Issue Newsletter. Inc NSW Parkinson’s 21 Golf Umbrella Apron $40 $20

Keep Cup Tea Towel $13 $10

Christmas is just around the corner!

Friends Shop Visit us at www.nswmealsonwheels.org.au/Shop WHAT’S ON

Guest Contributors A/Prof Colleen Canning Dr Paul Clouston Dr Scott Kim 1-3 A/Prof Kay Double MARCH Darryl Smeaton 11APRIL Jeffrey Ranson Young Working Age World Parkinson’s Editor Weekend Linda Davies (with the help of the Parkinson’s Day NSW office)

Parkinson’s NSW Inc 1800 644 189 PO Box 71 North Ryde BC NSW 1670 4-5 13-14 For your local Support Group please call 1800 644 189 M AY JUNE Parkinson’s Motorbike Ride Support Group [email protected] www.parkinsonsnsw.org.au – Sydney Olympic Park to Leader’s meeting Parkes www.facebook.com.au/parkinsonsnsw (Sydney) www.twitter.com/parkinsonsnsw 15-16 JUNE 4 Patient Movement 25 SEPTEMBER Disorders Society AUGUST Allied Health meeting (Sydney) Unity Walk and Run Awareness Seminar 14 13 25 NOVEMBER Golf Day OCTOBER 12 OCTOBER AGM World Parkinson’s Bequest Lunch (TBA) Congress (Montreal)

To RSVP for events please call the InfoLine 1800 644 189

Parkinson’s NSW Inc ABN 93 023 603 545

The information provided is for guidance only and is not a substitute for professional medical advice. Parkinson’s NSW Inc. takes reasonable care (in the context of freely available information) to keep the information it provides accurate and up-to-date; however, Parkinson’s NSW does not guarantee the correctness and completeness of the information. You should confirm that the information is applicable to your circumstances by checking it with your doctor or a qualified health care professional. 2012 Summer 117, Issue Newsletter. Inc NSW Parkinson’s 23