Parkinson’s NEW SOUTH WALES IINC. Newsletter – IIssue 99, Winterinter 20072007 Ease the Burden and Find a Cure Stand By Me Carers in the Blue Mountains Nepean and Blue Mountains Parkinson’s Support Group Two seminars were recently held by the Nepean Support Group for carers in the Nepean and the Blue Mountains. Sr Laraine McAnally, the Pd specialist nurse at Westmead, gave an overview of Parkinson’s disease, its progress and details of medications. PNSW specialist counsellor Deborah England addressed the issues that carers can face. Representatives from Centrelink and Carelink also gave presentations on what their organisations offer, and PNSW Support Group Coordinator, Trish Morgan, outlined the benefits of joining a support group. A warm and friendly welcome was given by Hazel and Tom Almost 100 people attended the two seminars. To help Tolhurst to those who attended the first meeting of the carers plan for the future, each participant was given a Blue Mountains Parkinson’s Support Group. Twenty-three kit containing plenty of helpful information to take home. people were there and several sent apologies. Many positive comments were received on the ‘The feeling was one of a group anxious and willing day indicating that the carers’ special needs were to share their happiness and problems plus hints,’ successfully met. Perhaps one of the most positive says Hazel. ‘It was amazing the number of people who outcomes of the seminars was the establishment of a volunteered to help in various ways, for instance having new support group in the Blue Mountains. Within a month contacts that may help or talk to us, people willing to of the seminars, Trish organised a public meeting for the print things and some who would help with morning tea, a new group and now the Blue Mountains Support group is very important job as far as I’m concerned! So it went on up and running. happily bonding over a cuppa.’ The group will meet on the third Thursday of each month at the Baptist Church Hall, corner of Orient Street and Great Western Highway, Lawson from 10.30am - 12noon. Edna Beddall There will be gentle exercise, guest speakers from Edna Beddall received health and community services, a library of books, a 2007 NSW Seniors videos and CDs and plenty of time to chat and provide achievement award for mutual support. community service, in Parkinson’s support groups are open to anyone affected recognition of her work by Parkinson’s or interested in learning about it. as a volunteer with the Concord exercise group, Concord office and the News Flash Canterbury support group. Embryonic stem cell research and John Silk therapeutic cloning legislation On May 4, Dr. Brendan The NSW Legislative Council voted overwhelmingly Nelson presented PNSW 26:13 in favour for stem cell conscience vote for President John Silk with the Human Cloning and Other Prohibited Practices a Bradfield Community Amendment Bill 2007 Service Award, in recognition of outstanding contributions made in the FEATURES area of community service. • Research progress in Parkinson’s disease ... page 4 • Speech pathologists learn to say it loud ........ page 5 • Waste matters .......................................................... page 8 www.parkinsonsnsw.org.au PAGE 2 Stand By Me WINTER 2007 President’s Allen’s Triple A – Report awareness, acceptance, activity In my message to you this If you have time on your hands it is possible that you quarter I am going to single are vulnerable to increased stress levels. Keeping busy out VOLUNTEERS. is very beneficial. If you have to, get a hobby. Keep your Recently we required brain ticking over. It is very important to keep busy. Does volunteers to put a mailer not matter what type of ‘busy’. into envelopes and we were Get rid of that narrow, illegible scribble, printing is easy able to cobble together an assorted group of people; and readable. The only thing that requires running writing some had a particular interest in Parkinson’s, others is your signature. You will feel less frustrated if you can were ‘professionals’ from Volunteer Australia and a third read what you have written. group were friends of some Council members. All had a great fun for three hours, finished the mailer early and proceeded to pack up cards for resale. A saving of over Diary Dates $1000 for us! SEPTEMBER This got me thinking about the thousands of hours of free service donated each year to PNSW, which enable 2 - 9 Parkinson’s Awareness week us to EXIST. 3 Cowra Awareness Seminar There are committees in the 50 support groups, people 12 Seminar – Parliament House who man the front desk in the office, those who help out featuring George Mellick at functions, guest speakers at seminars and support OCTOBER group meetings and many others, including the Council. 10 PNSW Coffee Morning Also there are people like Gwen Bowen of the Southern 24 Putting in for Parkinson’s NSW Illawara Support group who received an Australia Day Inaugural Golf Day Citizen’s award in recognition of her work at the Kiama hospital and with her branch of PNSW. Please contact the InfoLine on 1800 644 189 We take some of these for granted and I am as guilty as for more information. the next person of sometimes not acknowledging them as often as I should. Their unswerving support for all of us makes the ‘Ease the burden’ part of the equation just that little bit easier. My thanks to them − one and all! Early July will see the Support Group leaders or their representatives come together for a meeting where You are cordially invited to attend the: we will have some interesting insights to share about Parkinson’s in Australia. A wonderful opportunity for folk from the whole spectrum of PNSW − Support Groups and Council, city and country − to meet and share information and ideas and foster understanding. I would Parkinson’s NSW Golf Day like to acknowledge the sponsorship that Rex Airlines have provided our regional members with free flights and “PUTTING IN FOR PARKINSON’S” Novartis for the use of their rooms and their generosity in Proudly supported by Sydney Markets catering for the two day meeting. Money raised will go to the Parkinson’s NSW Counselling Service Vice President Allen Cropp has spent a great deal of For a great fun day out, put together a team of 4 or we’ll time compiling information for PWP and carers alike. This gladly put you in one. It’s open to male and female issue of Stand By Me features some of Allen’s positive golfers of all standards - Greg Norman to Greg Normal. philosophy that encourages us to take a refreshing look To register as an Augusta Gold or St Andrews Silver at ourselves. Useful and enjoyable reading. Sponsor or as one of the Huntingdale Hitters go to As I always ask in my talks, ‘Have you taken your meds?’ our website www.parkinsonsnsw.org.au and click on Keep well. Parkinson’s Golf Day and download a registration form John Silk or call us on 02 8875 8900 for more information. Prizes – Plenty of them including 3 overseas return airfares flying Virgin Atlantic. My Health Record The Cause - The most important The NSW Health department produces My Health consideration of the day Record − Keep well, keep track. For more information on this book please call 1800 644 189, contact See you there! your local support group leader or you can order directly from the NSW Health, Better Health Centre on 9816 0452. WINTER 2007 Stand By Me PAGE 3 dopamine and using an exercise program. None of the CEO’s other possible therapies listed (including taking vitamins Report A and E, co-enzyme Q10, glucosamine antioxidants or using massage, Reiki, Bowen, Alexander technique, tai chi or aromatherapy) received a greater than 50% NSW Stem Cell Legislation confirmation of use. Many of you will be aware We were keen to hear your views about the priorities that legislation to allow stem for Parkinson’s NSW Inc. Increased public awareness cell research and therapeutic was voted as the top priority followed by seminars and cloning (as recommended support for research. This will assist our Council and by the Lockhart Committee) was passed by the staff with determining priorities. Commonwealth Parliament in December 2006. Mirror legislation was passed by the Victorian Parliament in April 2007. Similar legislation was recently introduced to the NSW Parliament Living alone with Parkinson’s Before the Bill’s introduction to the NSW Legislative Assembly, the Honourable Verity Firth, Minister for Parkinson’s NSW received a grant from a private Science and Medical Research and Minister Assisting the foundation to hold seminars for people living alone Minister for Health (Cancer), arranged two parliamentary with Pd. The program was designed to give specialised information sessions for members of Parliament. We information and support and to offer strategies to help were asked to participate on a panel, along with key those people living alone face the uncertain future. researchers and fellow consumer organisations that are The one-day seminars, multiple morning seminars members of the Coalition for the Advancement of Medical and weekly teleconferences have all featured guest Research Australia (CAMRA). speakers covering details of Pd, including symptoms Neil Sligar (a former Council member) attended the and medication, by a neurologist or Pd specialist nurse; Wednesday evening session and I attended the representatives from Centrelink and Carelink, a legal Thursday morning session. We were both able to draw practitioner and a Pd specialist counsellor. the Parkinson’s NSW position statement on Stem Cell The first seminar was held in Wagga Wagga then Research to the attention of MPs and their advisers (this Newcastle, Concord and Dapto.