The Parkinsonian the Quarterly Magazine of Parkinson’s new Zealand June 2010
vol: 13, no. 2
AGM And nAtionAl Review On the 16th and 17th of April, Parkinson’s NZ held its AGM. The major focus of the meeting was discussion of the results of the National Review that has been carried out over the past year. Effective Governance was contracted to facilitate the review and lead the process, making sure that all interested parties had an opportunity to have input. Five regional meetings were held and an astounding 905 people responded to a comprehensive survey (82% of respondents were members). A Reference Group of more than 40 people was formed, including people with Parkinson‘s, carers, staff and health professionals. The information was gathered by a Working Party, who put together a report and recommendations for the Board. The Board proposed the recommendations to the Council at the AGM and the Council passed the report unanimously (with a few small additions). Many of the recommendations build upon or enhance current services but the biggest changes include:
• Greater consistency in services across the country and support for Field Officers to ensure best possible service; including the introduction of a Clinical Leader role who will work with local divisions, Field Officers, the Board and National Office to ensure the development and implementation of standards • Greater consistency of employment practices • A greater focus will be put on awareness raising • Better training of Council delegates to help them fulfil their role • Greater sharing of resources amongst divisions • Investigation into shared fundraising opportunities • More support for research and dissemination of research activities The review has been a long and involved process and huge thanks go out to all involved. This is a big milestone for Parkinson’s NZ and will ‘future proof’ the Society and its work. So now the hard work really begins; implementing the recommendations.
PARKinSon’S QUilt PRoJeCt These beautiful pictures showcase the New Zealand submission to the international Parkinson’s Quilt Project. The Parkinson’s Quilt will be displayed for the first time at the 2nd World Parkinson Congress in Glasgow, Scotland from September 28th through October 1, 2010. Our panels celebrate the creativity of people living with Parkinson’s through the use of bright colour. New Zealand’s diverse landscapes and birdlife are suggestive of the imaginative personalities and skills of our people. New Zealanders come from varied origins and these are also illustrated in the use of Maori motifs, the home spun wool of Scottish and Irish crofters though to Te Wai Wai influence from the Pacific Islands. Contributors include Jenny Coombe, Jennifer Norriss, Ruth Binns, Ria Eckhardt, Merle Amiger and huge thanks go out to contributor and project co-ordinator, Annette Sands. More pictures with detail of the panels are featured on the next page.
Chief exeCUtive’S RePoRt Tena Koutou e hoa ma My heartfelt thanks to all of our readers who participated so thoughtfully and constructively in our review. You will see from the cover story that we are set for some exciting and positive times ahead. Work has begun on the development of competency frameworks and standards for our valued Field Officer Service, which will contribute to an enhanced service to members. Many members have expressed concern regarding the cutting of home help, which is often based on a needs assessment by telephone. It is pleasing that the recent Budget included an additional $25.5 million for home and community support and $7.9 million for supported independent living to be spread over the next four years. This is good news. However, it may be some time before we see whether this relatively small amount makes a difference. In the meantime, I recommend that you have a look at
our suggestions on how to respond if you receive a telephone call regarding a needs assessment on page 10. These suggestions are provided by Age Concern. On the cover of this issue of the Parkinsonian and on this page you will see wonderful examples of some of our members artistic talents. We are very excited that this labour of love is going to be part of the world display. Our grateful thanks to the talented team of people with Parkinson‘s and carers who worked on this, especially coordinator Annette Sands. If you would like to see quilts from other countries that are part of the project you can visit the website www.support.pdf.org/quilt With best wishes for a warm winter
deirdre and the team at national office.
new CoMMUniCAtionS AdviSoR At nAtionAl offiCe National office welcomed Kate Baker into the role of Communications Advisor at the end of March. Kate has worked in communications roles in the public sector for a range of organisations including the Ministry of Social Development, The Broadcasting Standards Authority and the Ministry of Research, Science and Technology, and brings with her skills and experience in media management, writing, public relations and social media. In her short time with Parkinson‘s NZ so far she has already presented on awareness week and social media at the AGM, as well as setting up the new Parkinson‘s Twitter feed which you can follow at www.twitter.com/parkinsonsnz
CyClinG MAy Allow PeoPle with PARKinSon’S new fReedoM Michael J Fox foundation to support ParkFit, a new clinical trial in the Netherlands that aims to further explore the effects of exercise. The trial has already recruited 80 patients, who are being randomised either to an exercise program based on cycling or a matched program that just promotes safety of movement rather than volume of movement. Though the discovery that people with Parkinson’s can continue to cycle even when experiencing freezing is an exciting one, it is not the only activity that they can continue to enjoy. People with Parkinson’s can often dance, run, walk smoothly and do complex movements for a few minutes if they are given appropriate signals — emotional or visual cues.
Many readers will have seen or heard about TV reports in the last month which included video of a man with advanced Parkinson’s riding a bicycle. The remarkable footage has sparked a lot of interest in cycling amongst people with Parkinson’s. A report from Dutch researchers in the April edition of the New England Journal of Medicine suggests that cycling may allow some people with Parkinson’s another way to stay active. The researchers were surprised to observe that a 58 year-old man with advanced Parkinson’s and severe issues with freezing was still able to ride a bicycle up to 15 miles per day. Once he dismounted the bike his gait issues immediately resumed.
The Parkinsonian spoke to Dr Althea Lord, geriatrician of Hutt Hospital, who said that many activities that include rhythm or an exaggerated movement can be successfully achieved by people with gait or freezing problems. Tai Chi and marching are two examples of this kind of activity. Dr Lord says she has heard reports of people with Parkinson‘s falling when attempting to cycle and urges caution before embarking on bike riding. Her recommendations are as follows: • Good sitting balance is essential • Start out with a stationary bike or exercycle • Seek advice from your physiotherapist • Be cautious if you have not been exercising regularly
Video of the man is available on Youtube as well as the website of the New England Journal of Medicine.
• Don’t attempt to cycle if you were not experienced in riding a bike before having freezing or gait problems
In the year since meeting the man, Dr. Bastiaan R. Bloem of Radboud University Nijmegen Medical Center in the Netherlands has seen another 20 patients in his clinic who have issues with freezing of gait but who can also still ride a bicycle.
Dr Lord also advises that not all people with Parkinson’s will be able to ride a bike, which shouldn’t discourage anyone from trying different forms of exercise and ways of keeping active. The important thing is to find an activity that works for you and that you enjoy.
Because of this discovery, Dr Bloem’s group has received funds from the Dutch government and the
newS & ReSeARCh Parkinson’s medication and compulsive behaviors: a strong link While physicians have known about the link between some Parkinson’s medication and compulsive gambling since about 2005, little was known about how many patients are affected this way, whether the compulsive behavior went beyond gambling for some, and whether this is clearly a medication-induced problem. A study in the Archives of Neurology released this month answers those questions. Some 13.6% of Parkinson’s patients taking levodopa or one of the dopamine-agonist medications widely used for the movement disorder show clear signs of some impulse-control disorder. That rate was between 2 and 3.3 times higher among people with Parkinson’s being treated with these medications than among patients who did not take them. About a quarter of those patients experienced more than one type of compulsive behavior. Compulsive buying was the most common manifestation of such impulse-control problems, affecting 5.9% of all medicated patients; 5% experienced problem or pathological gambling; 4.3% engaged in binge eating behaviors; and 3.5% engaged in compulsive sexual behavior. Compulsive buying and binge eating were more common among women patients than among men; compulsive sexual behavior afflicted more men than women. The researchers also found some evidence that genetic inheritance might make some patients more vulnerable to these side effects of Parkinson’s medicine: Patients were far more likely to develop compulsive buying, eating or gambling behaviors if they had a first-degree relative who is a known gambler.
Finally, the study, which included 3,090 people with Parkinson’s, found that those taking a combination of levodopa and one of the other dopamine agonist medications (including pramipexole and ropinirole) were most likely to develop an impulse control disorder. Those on a dopamine agonist without levodopa were slightly less likely to develop such behavioral problems; and those on levodopa alone were about half as likely as the first two groups to develop impulse control problems. Source: L.A. Times 10 May 2010
Simple eye tests could lead to early diagnosis With Alzheimer’s and Parkinson’s, damage to the brain starts long before the first symptoms appear. Could simple eye control tests lead to an early diagnosis? Queen’s University‘s Doug Munoz has found that Alzheimer‘s and Parkinson’s patients perform poorly on tests that measure their control over fast eye movements called saccades, in ways that are distinctive for each disease. The patients did worse on the tests as their symptoms progressed. Dr. Munoz now wants to follow people as they age to see if the tests can detect subtle, early signs that are predictive of who will eventually develop Alzheimer’s or Parkinson’s. It really looks like using it as a biomarker to see something early is going to work. As the disease progresses, these measures get worse and worse, so we figure we can back it up, he said. Currently, there is no definitive way to predict who will get either disease. Alzheimer’s is a form of dementia, while Parkinson’s is a degenerative condition that affects muscle control. There is no cure for either. In both, many researchers suspect it might
be easier to stop or slow down damage to the brain if they could be caught early enough. Source: The Globe and Mail, 21 April 2010
Beauty treatment gives relief to Parkinson’s patients One of the world’s most fashionable beauty treatments is gaining popularity for something other than the war on wrinkles. Botulinum Toxin, commonly known as Botox, is being used at the Muhammad Ali Parkinson Centre (MAPC) at Barrow Neurological Institute to help manage symptoms associated with Parkinson’s disease and other movement disorders. “Botox is the most powerful nerve toxin known to man and it’s dramatically improving the quality of life for people with Parkinson’s,” says Guillermo Moguel-Cobos, movement disorder neurologist at the Centre. Parkinson’s is characterised by muscle rigidity, tremors, a slowing of physical movement and a loss of physical movement. Botox, which has been purified and then diluted, can be injected straight into the muscle, relieving the spasms and most importantly, the pain. “It’s a medical treatment but it’s also an art to administer. Every patient receives Botox differently in different muscles, in different locations and in different dosages, so experience with the drug and the disease is crucial,” says Moguel-Cobos. MAPC has been using Botox to treat Parkinson’s and other movement disorders such as dystonia since the early 1990s. The treatment has recently gained popularity due to the growing number of patients at the MAPC. Out of approximately 1,600 patient visits each year, 30 per cent receive Botox injections. To help with the demand, the
newS & ReSeARCh mice,” Zhenyu Yue, an Associate Professor of Neurology and Neuroscience, said in a Mount Sinai news release.
be used to test people who have Parkinson’s in the family, or even to set up a national screening programme. The team behind the study claim that diagnosing patients earlier could prevent the damage of up to 60 per cent of the nerve cells in the area of the brain that controls movement.
Source: Medical News Today, 21 April 2010
“Importantly, as we have developed assays that allow us to measure the enzymatic activity of LRRK2 in the brain, the mouse models provide valuable tools in the preclinical development of drug compounds that target aberrant LRRK2 activity. This research may translate to non-familial Parkinson’s disease as well,” Yue added.
Parkinson’s linked to Genetic Mutation
Source: Mount Sinai Medical Center, News Release, March 31, 2010
In mice, researchers see tie-in to tremors and other motor problems.
Parkinson’s could be diagnosed by voice changes
Centre runs a Botox Clinic two days a week. Depending on the patient and the severity of their movement disorder, their Botox can take 30 minutes to an hour to inject and can take up to seven days to become effective. For most, the drug will provide significant but variable relief of symptoms that can last up to three months, says a release from the Barrow Neurological Institute.
New details about how a mutation in a gene called LRRK2 may cause Parkinson’s disease have been uncovered by U.S. researchers. In experiments using genetically engineered mice, the Mount Sinai School of Medicine team found that LRRK2 regulates dopamine transmission and controls motor per-formance. Dopamine is a neurotransmitter. The mutation eliminates the normal function of LRRK2, resulting in inherited (familial) Parkinson’s. The study was published in The Journal of Neuroscience. The mice created and used by the Mount Sinai researchers feature a key element of Parkinson’s disease, age dependent reduction of dopamine, which is believed to cause the motor function problems, such as tremors, rigidity, and involuntary movement experienced by people with Parkinson’s. “While the mice are not at the stage where they experience the typical symptoms of Parkinson’s, like tremors or reduced movement, we are able to study the potential root cause of the disease in these
Parkinson’s could be diagnosed earlier by measuring changes in the sound of the voice, according to research published in the Journal of Speech, Language and Hearing Research. In most cases Parkinson’s is identified only at an advanced stage, once people have started to show symptoms. Now researchers in Israel and America have found a way of measuring speech patterns, inaudible to the human ear, to test if apparently healthy people have the condition. By the time that patients begin to show symptoms of Parkinson’s, it is quite advanced and vital brain cells have been significantly damaged, however researchers have discovered that the voice undergoes changes at earlier stages.
They warn that late diagnosis can also mean that the drugs used to treat the condition are less effective. Prof Shimon Sapir, from the University of Haifa in Israel, who developed the new test, said: People have tried speech recognition methods previously but they have not really been accurate enough to distinguish between the healthy and those with early Parkinson’s. What we have done is to rework the way we analyse speech so that we can accurately use it for diagnosis. Dr Kieran Breen, from Parkinson’s UK, said: “Trying to find ways to diagnose Parkinson’s at an early stage is key to understanding how to develop better and more effective treatments.” The results of this research show that it may be possible to develop tests to identify subtle voice changes at an early stage of the condition. The method was tested on 38 people with Parkinson’s and 14 without. Source: Daily Telegraph 16 April 2010
Although they are not normally detectable they can be picked up by newly developed computer software. The team behind the research believe that the method could
Please do not interpret anything in this magazine as medical advice. Always check with your Doctor. The appearance of any article or other material in this publication does not imply the agreement of Parkinson’s New Zealand with the opinions expressed therein.
PARKinSon’S fACt Sheet fReeZinG in PARKinSon’S
WhAT is freeZiNg? Approximately 30 percent of people with Parkinson’s will experience ‘freezing’. ‘Freezing’ describes the experience of stopping suddenly while walking or trying to begin walking, and being unable to get going again for a period of seconds or even minutes. Many people describe this as feeling like they are ‘stuck’ to the ground, while their upper body is still able to move. Freezing is not always limited to walking; it can being experienced when starting any movement, such as getting out of bed, rising from a seated position or eating and drinking. Difficulty getting started with a movement is often referred to as ‘start hesitation’. The loss of automatic movement that happens with freezing and start hesitation can be particularly disturbing as it means that previously simple tasks and actions have to become conscious and deliberate. This can lead to a lack of confidence in social outings and public places as well as being a frustrating block to enjoying many activities.
Freezing can be made worse by anxiety, lack of concentration and unfamiliar situations. It can occur in a number of places or situations, but particularly in the following: • crowded or new places • entries to doorways and lifts • narrow spaces, such as theatre aisles or church pews • when the surface a person is walking on changes suddenly, such as a different pattern on a carpet, or a change from a smooth to an uneven surface. It has been observed that freezing is slightly more common in people whose initial Parkinson’s symptoms involve difficulties with gait (such as problems with balance).
WhAT CAUses freeZiNg?
It is also far more likely to occur in people who have had Parkinson’s for some time and who have been on levodopa treatment for a number of years. However, as freezing can occur in people who are not being treated with levodopa, the condition cannot be simply described as a side effect of medication. It has been suggested that other chemicals in the brain, besides dopamine, may be involved in freezing.
The cause of freezing is not clearly understood, but it is thought that it occurs when the normal sequence of movement is interrupted or disturbed.
Many people may find that they experience freezing when they are having ‘off’ periods. The ‘on/off’ phenomenon is a side effect of levodopa treatment
Freezing can also lead to problems with balance, which increases the risk of falling.
PARKinSon’S fACt Sheet
found, again, in some (but by no means all) people who have had Parkinson’s for some time. It can best be described as an unpredictable shift from mobility (‘on’) to a sudden inability to move (‘off’), but shifts from ‘off’ to ‘on’ can occur just as suddenly. It is important to recognise that freezing is not the same as the ‘on/off’ phenomenon.
WhAT TreATmeNTs AND solUTioNs Are AvAilAble? It is important to remain active, even when faced with freezing, as inactivity can compound other symptoms of Parkinson’s. There are a number of treatments and techniques that can be used to treat freezing. They include the following:
FOOTWEAR Some people find that leather soled shoes help prevent freezing, but these can also be slippery and increase the risk of falls. Different levels of grip can also help to encourage movement. A physiotherapist or podiatrist can help you make decisions around footwear. Many people find that with the right cues and techniques they can continue to remain active by walking, dancing, doing Tai Chi, marching and even cycling. What these activities have in common is either the use of rhythm, or an exaggerated movement. Speak to your Parkinson’s Field Officer if you would like advice on any of these options or would like to be referred onto a doctor, physiotherapist, occupational therapist or podiatrist.
DRUGS If freezing occurs during ‘off’ periods then adjustments in drug regime may help. Any changes to your medication should be discussed with your doctor.
PHYSIOTHERAPY A physiotherapist can recommend techniques and exercises such as correcting posture, learning to put the heel down first, and using different cues to overcome the problem. Some of these techniques include: • the weight shift method, where you try to gently shift the majority of your weight sideways rather than forwards to allow you to take a step with the other leg • use of rhythm such as music, a metronome, or counting • vision cues such as strips of tape placed in difficult areas such as doorways, which provide an obstacle to step over and focus the movement.
OCCUPATIONAL THERAPY An occupational therapist can recommend techniques and equipment to avoid freezing episodes, particularly in your home and or work place.
CAReRS’ CoRneR CARinG while woRKinG oR StUdyinG If you have significant caring responsibilities, you will need support at work or study.
The righT To reqUesT flexible hoUrs The Employment Relations (Flexible Working Arrangements) Amendment Act 2007 gives carers the right to ask for changes to their working arrangements. Examples of “flexible work” include part-time work, compressed hours, shift work, working from home, more time off in school holidays and adjusted starting and finishing times for the work day. Make a time to talk to your employer to work through your request for flexible work and any questions or concerns your employer may have. You need to make your request in writing. Employers are required to consider and respond to requests within three months. They can say no to your request, but only on the grounds provided by the Act. Learn more at the Department of Labour’s website www.dol.govt.nz/worklife
Who qUAlifies? You need to have been with the employer for at least six months before making the request. You can only make one formal request in any 12 month period, but you can talk to your employer informally at any time about varying your working arrangements.
NegoTiATiNg emPloYmeNT AgreemeNTs Every employee must have a written employment agreement. This can be a collective agreement or an individual agreement. You can negotiate a variation to your terms and conditions of employment in this agreement. The Department of Labour’s website has an online tool called the Employment Agreement Builder. It includes draft clauses about hours and days of work etc, which can be modified to reflect your caring situation and the individual flexibility you negotiate with your employer.
Who To CoNTACT Make a time to talk to your employer about your caring situation (or your manager or human resources manager if you work for a larger organisation). They should be aware that you may sometimes need time out to attend medical appointments or cope with unexpected situations or need their understanding if the person you support is unwell or in hospital. It might also be helpful for colleagues to know that you have a caring role, so they can help at difficult times.
if YoU geT sTUCK If you have no luck talking with your manager, then talk to their manager, the person who leads the organisation or someone from Human Resources. If you are a member of a union, seek its advice.
emPloYmeNT AND sTUDY Balancing your carer role with work or study can be challenging. Here are some sources of help available to you:
CAreer serviCes Career Services is a government organisation that provides independent career information, advice and guidance. They help anyone at any stage of their career. This includes free information and advice for: • young people (and their parents, families, whanau and mentors) who may be at school, about to leave school, in tertiary training, having a gap year or who have left school early and are unsure about their career plans • job seekers, including people who are currently out of work, in between work, actively looking for a job or returning to work, for example, after raising a family or returning from overseas • people looking to improve their skills or change their career path. Career Services employs Maori and Pasifika consultants who regularly run hui and fono (meetings) designed to provide customised career planning assistance to Maori and Pasifika peoples.
Who To CoNTACT
Free information and assistance is available online at www.careers.govt.nz or by talking in confidence to a careers advisor.
StudyLink is a service of the Ministry of Social Development. StudyLink helps make sure students get the finance and support they are entitled to so they can complete their study.
Phone 0800 222 733
Phone 0800 88 99 00
WorK AND iNCome Work and Income can help you plan for and move into training or paid work. Phone 0800 559 009
ePdA And PAi lAUnCh PARKinSon’S deCiSion Aid UP To DATe iNformATioN AboUT PArKiNsoN’s, AssembleD bY eUroPeAN PArKiNsoN’s exPerTs, is NoW AvAilAble for everYoNe. The European Parkinson‘s Disease Association(EPDA) and the Parkinson‘s Association of Ireland (PAI) have worked together to launch Parkinson‘s Decision Aid (PDA), an online educational toolkit that seeks to put people with Parkinson’s in the best possible position to make the right choices so they themselves can actively work with their healthcare professional to improve their quality of life and make informed choices together. Una Anderson-Ryan, PAI Chair commented: “On behalf of the Parkinson‘s Association, I would like to endorse and support this wonderful project. We are very concerned that people with Parkinson’s often do not get the right information to help deal with their condition, and I feel this new life-line will help them. We enourage all people with Parkinson’s, their families members and healthcare professionals to use this aid.” Knut-Johan Onarheim, EPDA President, welcomed the launch, stating “the EPDA is delighted to be working in partnership with the PAI in making this significant resource available to the country. The PDA is an
invaluable tool for people with Parkinson’s and the families and will aid them in asking the right questions at the time so that they can take part in managing their condition, which will ultimately improve their quality of life.” With so much variable and confusing information currently available via the internet, the PDA is both timely and essential. It provides a wealth of up to date information about Parkinson’s that has been researched and reviewed by European Parkinson’s experts, and has been written in an easy-to-understand style for everyone. Launched in Ireland during Brain Awareness Week (8-14 March) PAI galvanised its members, branches and support groups to disseminate the PDA leaflet to the general public and healthcare professionals via hospital clinics, doctors surgeries and pharmacies. The leaflet serves as a gateway to the PDA website, www.parkinsonsdecisionaid.eu.com and the much-needed validated information gathered. Freely available to everyone, it has been designed to suit all needs, and offers information for the different stages of Parkinson’s as well as treatment options, diet and exercise advice.
whAt to do when the hoMe-SUPPoRt ASSeSSoR CAllS Your home help can be cut as the result of a telephone assessment of your needs. We tell you how to get your case across. District Health Boards around the country regularly review the help given to older people to help them stay in their own homes. Needs assessors (NASCs) may do this by telephone. Here are some ways you can ensure the assessor gets an accurate picture of your needs:
IF YOU GET A PHONE CALL ASKING HOW YOU’RE COPING: 1. Ask for the purpose of the call – ask if this is a review or assessment of your home-support care. 2. Get the caller’s name, role, the organisation they’re representing and their contact details.
IF IT IS A NEEDS ASSESSMENT: 3. This is an important call – it’s okay to be pleasant but don’t treat it as a social call. 4. Take time to prepare: ask them to phone back when you’re ready. Collect your notes and information and have a quiet suitable place to talk. 5. Take notes of the conversation.
6. Co-operate with the assessor – give them all the information they need to get an accurate picture of your needs. 7. Don’t put on a brave face if you’re having trouble coping with household tasks or experiencing depression – be accurate. This an opportunity to increase the support you’re getting if it’s inadequate. 8. Give full information – if you can do an activity but it involves risk or pain say so.
IF YOU’RE HAVING DIFFICULTY: 9. Say if you can’t hear or understand the questions. 10. Say if you have other disabilities that could affect your ability to answer questions. 11. It’s your right to have a support person or whanau/ family involved. 12. Ask for a face to face assessment.
AFTER THE ASSESSMENT: 12. Ask your appeal rights, and how to make an appeal against an assessor’s decision if necessary. 13. Tell Age Concern your experiences. Source: Age Concern Website
iMPoRtAnt info foR USeRS of the exelon PAtCh Novartis, manufacturers of the Exelon Patch (a treatment for Alzheimer’s), have implemented a scheme which effectively reduces the price of the patch by half. The actual price will vary from pharmacy to pharmacy, however, the cost range should be between $110-$160 per month. Please check with your pharmacist to make sure you are being charged correctly.
field officer Scholarship 2010
world Parkinson’s Congress
We are delighted to announce that Paula Ryan from Otago has been awarded the field officer scholarship for 2010. She will be travelling to the World Parkinson’s Congress in Glasgow in September to present about the Rural Outreach Clinics that the Otago division has developed.
The 2nd World Parkinson’s Congress 2010 aims to provide an international forum for the latest scientific discoveries, medical practices and caregiver initiatives related to Parkinson’s disease. By bringing physicians, scientists, allied health professionals, caregivers and people with Parkinson’s disease together, they hope to create a worldwide dialogue that will help expedite the discovery of a cure and best treatment practices for Parkinson’s.
28 september - 1 october 2010 glasgow, scotland
The aim of the clinics is to improve access to care, quality of care and improve health outcomes for those living in rural Otago.
newS fRoM ARoUnd the CoUntRy northland Following all the positive news from overseas Northland is starting their own Pilates for Parkinson‘s Classes. Most of the exercises can be done sitting in a chair if the person is not able to lie on the mat on the floor. The division is also pushing ahead with its Nordic Walking group and hopefully some will take up the opportunity to participate in the Nordic Walking Research trial being run by the Auckland Division through Auckland University of Technology (AUT).
household, Russell feeling it was not a runner but I felt it was worth a try. The result - lots of phone calls, lots of wool around the community that Russell collected, a shed full and extra trailors in the yard, a VERY surprised Kevin James. The community have been very generous, with some people donating all their clip, others part of the sale and some retaining all their clip. The donors have all had receipts sent so they can claim it as a donation. So it was a runner, and good publicity for MS/Parkinson’s. The full total is not in as I write this, Kevin James kindly donated advertising costs also.
Waikato has a new Parkinson’s Field Officer for the Thames-Coromandel area. Donna Earley replaces Julie Sturgeon who is now going to have some time out with family and travel. Waikato‘s not so new Field Officer, Eileen Barker, who covers Hamilton, Cambridge and the southern region down to Taumarunui has just about got around to see everyone on her list as well as successfully reviving the Upbeat group in the area. The Upbeat group certainly enjoy their get togethers at cafes around the Waikato region. Waikato member Barry Heaven attended the Upbeat Outward Bound course with his wife Denise and reports that “After six days of activities we were all tired but exhilarated and revived ready to take on the world (well home at least) having had a great experience.”
Wool collection fundraiser on the West Coast, organised by Jane Adams
South Canterbury South Canterbury members have enjoyed three very good speakers at their Social afternoons over the last three months. Daniel Naude from the Timaru District Council Road Safety spoke about Road Safety. It was very interesting and members were given a chance to air their concerns over various ‘bad spots’ around Timaru. At the AGM Steve Little spoke on his career in the honey industry. He has worked very hard to get to where he is now with importing honey to various places around the world, particularly Japan. At the May meeting, Jim Pearce spoke to members about riding his bike from Paris to Istanbul biking through eight Countries, including five capitals. Altogether he role 4000km in 49 days.
Barry and Denise Heaven arriving at Outward Bound
west Coast Jean Adams of the West Coast division sent in this great story of an innovative fundraiser she organised:
President Janet, along with delegate Joan, really enjoyed the AGM in Wellington. A highlight was meeting other members from around New Zealand.
When we were ‘full time farmers’ we used to sell our wool clip to Kevin James wool buyer from Rangiora. In more recent times the local shearer has kindly taken it away but this service was not available this year because his storage shed was burnt down. So like so many hobby/lifestyle block farmers we had wool cluttering up our shed - what to do with it? Russell contacted Kevin, and yes he was coming over and would call for wool, Russell offered to coordinate the collection. Wording the advertisement was left to me - who being one not to miss an opportunity thought people might like to donate to MS/ Parkinson’s - this caused a lot of lively discussion in the Adams June 2010
South Canterbury Members at a Social Afternoon listening intently!
SwiMMinG leGendS RACe foR ChARity
The Parkinson’s New Zealand team: Anthony Mosse, PSNZ Chief Executive Deirdre O’Sullivan, Trent Bray, Sharon Musson, Melanie Jones, Bob Voss & Brett Naylor.
On Saturday 10 April 2010 at the West Wave Aquatic Centre in Waitakere, some of New Zealand‘s best ever swimmers lined up to race against each other for charity. The event was the biggest reunion of past swimming champions ever held in New Zealand, and was held on the final day of the New Zealand Open Swimming Championships. Parkinson’s New Zealand was extremely lucky to be represented by an all star team of Trent Bray, Melanie Jones, Sharon Musson, Brett Naylor and Bob Voss, captained by the former Olympic champion Anthony Mosse. The Parkinson’s team came third in the pool, and second in the fundraising stakes, raising an amazing $8,325.00 for Parkinson’s New Zealand.
ConGRAtUlAtionS Congratulations to all our Outward Bound participants! The weekend was a huge success and stories and photos will be published in the upcoming edition of Upbeat.
UPBeAt weeKend The next upbeat weekend will be held from 5-7 November in Palmerston North. This is a hugely valuable weekend and we encourage you to attend. To register your interest, please email email@example.com
Parkinson’s new Zealand PO Box 11-067 Manners St Wellington 6142 Phone: 04 472 2796 fax: 04 472 2162
Chief executive: Deirdre O’Sullivan
email: firstname.lastname@example.org website: www.parkinsons.org.nz
financial Administrator: David Bailey
office Manager: Patricia Hastings Communications Advisor: Kate Baker
freephone: 0800 473 4636 or 0800 4PD INFO
Project Coordinator: Jennifer Rainville office Administrator: Nuala Dunne
Published on Jun 2, 2010