The Parkinsonian The Quarterly Magazine of Parkinson’s New Zealand December 2010
Vol: 13, No. 4
Parkinson’s Awareness WEEK Lawn Bowls in Central Plateau, during Parkinson’s Awareness Week
o b e rt s o n
The recent UPBEAT weekend (for people with early onset Parkinson’s and their loved ones) was hugely successful with nearly 60 people attending. Speakers presented on a broad range of topics including depression, medication, sexuality, alternative therapies and exercise. There were also plenty of opportunities for people with early onset Parkinson’s, and their partners, to share their experiences and advice with others in a similar situation. A highlight of the weekend was the special dinner celebrating the 10th anniversary of UPBEAT. As the weekend coincided with Guy Fawkes there was after dinner fun with fireworks. The next UPBEAT weekend is tentatively planned for Auckland in early 2012. For more information on UPBEAT, please check out our website and forums.
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From 1-7 November, Parkinson’s New Zealand Divisions across the country held a variety of events to mark Parkinson’s Awareness Week. This year’s theme was “The many faces of Parkinson’s”. We wanted to draw attention to the fact that many people are affected by Parkinson’s – not only the 10,000 New Zealanders who have the condition, but also the countless family members, friends, colleagues and medical professionals who support them. A series of posters featuring people with Parkinson’s was produced and these have had extremely positive feedback. This was complemented by the launch of a new section of the Parkinson’s New Zealand website called “I live with Parkinson’s” which features the personal stories and experiences of those living with Parkinson’s. More content will be added regularly, so if you would like to contribute your story, please contact firstname.lastname@example.org Throughout Awareness Week, Divisions and National Office worked hard to increase awareness through library displays, seminars, media coverage and other events, as well as raising funds through collections around the country. More detail and photos of events are featured on pages 8-9. National Office was lucky enough to have a gorgeous sunny Wellington day for their collection on Friday the 5th of November. We’d like to thank MPs Peter Dunne, Grant Robertson, Paul Quinn and Annette King, as well as many kind volunteers who gave up their valuable time to make the day a success.
a word from the chief executive Kia ora Koutou e hoa ma This edition of the magazine gives you an insight into some of the great work being done around the country to raise awareness of, and funds for, Parkinson’s and our Society. As ever I am extremely grateful for all the hard work done by our volunteers and am particularly grateful to those who worked so hard during Parkinson’s Awareness Week – collecting money, providing interviews to the media, manning information stands and much more. We have had many compliments regarding our new posters and collection boxes. We have received great feedback on our new ‘real life’ stories section on the website. Visit this page to read our new December story kindly provided by Kathleen Sutton from Christchurch. It was heartening to see one of our longest serving volunteers Andrew Dunn recognised by the Kaupapa Oranga Trust during November. Andrew is one of Parkinson’s NZ’s four founders and is currently the Chairperson of the Board. We continue to be grateful to him for almost three decades of volunteering. In late September and early October I was fortunate enough to attend the 2nd World Parkinson’s Congress which was held in Glasgow, Scotland. Over 4,000 people attended the conference and it was truly an international crowd. We will be publishing a report from Otago Field Officer Paula Ryan, who also attended after being awarded a PSNZ Field Officer scholarship, in the next edition of The Parkinsonian. However I did want to take this opportunity to tell you about just a few of my highlights. Mornings started with a Hot Topics session where four poster abstracts were presented followed by a Plenary Session for all delegates. The rest of the day was broken into a wide choice of workshops and parallel sessions. My biggest problem was choosing which session to attend as there were so many interesting things running at the same time. In addition lunches and evening functions gave me the opportunity to meet with colleagues from around the world.
I was particularly interested in the focus on genetics and testing to try and prevent development of Parkinson’s. We were updated regarding what can now be tested for and many of the speakers made us think about the ethics of genetic when the psychosocial implications are not known. An excellent first person story ‘ Genetics and me’ was told by David Iverson (USA). You may have seen his film ‘My father, my brother and me’ on TVNZ7 last year. If not it can be viewed through a link on our website or a copy of the DVD borrowed from our National Office Library. I also found worthwhile sessions that focused on better collaboration between stakeholders. On the one hand it was disheartening to have evidenced, yet again, how limited communication is around the world and how much ‘doubling up’ takes place, however the obvious commitment to improving this that was displayed by many powerful decision makers at the Congress was extremely positive. Practical sessions on advocacy and lobbying and also on delivering educational information and models proved extremely relevant to my role. I was able to spend time with Pharmaceutical Reps and other colleagues learning more about medications not currently available in New Zealand, and also to attend research presentations showing much attention (and hope) is still being given to gene therapy. I am sure Paula’s report will also expand on many of the non medication therapy advances and suggestions. Further details about all the presentations can be found at www.worldpdcongress.org With best wishes for a happy Christmas and New Year from all of us at Parkinson’s NZ. Nga mihi,
Publications available in Italian!
AGM Notice The 2011 Parkinsonism Society of New Zealand AGM will be held in Wellington on the 8th and 9th of April. More details to follow.
Last year PSNZ published information in a number of languages. One that wasn’t included was Italian. However, Deirdre has brought home a number of publications in Italian from the congress, so if you are interested, please contact email@example.com
Get Going – Ruth Kohlhase runs the Auckland Marathon My dad Eric suffers from Parkinson’s Disease and this year has definitely been one of the hardest in terms of his condition and changes that have taken place. As a family, we have always taken part in all sports and strived to compete at our full potential. Dad was a fantastic athlete in his time, and was always our number one supporter. Running a marathon was a challenge that no one in my immediate family had ever attempted. It was important to me to have reasons for running. Not just for exercise or to keep fit, but to put my running shoes on, let my mind rest and leave the problems or obstacles of the day behind. You would be surprised how relaxing a long run can be and how great you feel afterwards. When entering my first marathon, I knew it was always going to be a personal challenge; however, by running for “Get Going for Parkinson’s” the emphasis was about the cause and raising awareness of Parkinson’s Disease. Of course I still had to do the training and run the race, but my thoughts were dedicated toward helping others by achieving my goals.
GET GOING FOR PARKINSON’S With the support of family, friends, work colleagues and running partners I was able to raise close to $5000 for the Parkinson’s Society. People were so amazingly generous, it was very unexpected. The marathon itself was one of the best things I have ever done. It tested all elements of mind, body and soul. I enjoyed every minute of the race; it made all the sacrifices and pain worth it. I completed the race in my goal time and am already planning my next marathon. Get Going for Parkinson’s was most definitely a rewarding experience and it is nice to repay the favour of support to the Parkinson’s Society which they continually dedicate to my Dad and other people with Parkinson’s.
Ruth Kohlhase EDITOR’S NOTE: Huge congratulations and thanks go out to Ruth for her amazing effort, raising nearly $5000 when her initial target was $100! Well done, Ruth! To find out how you could Get Going for Parkinson’s call Melissa on 0800 473 463 or email firstname.lastname@example.org
Research invitation: pets and Parkinson’s Pet ownership is common in New Zealand and research has shown many health benefits associated with owning a pet. However, it is not known whether pets can improve the quality of life of people with Parkinson’s and, if so, how. The School of Population Health, at the University of Auckland, is conducting a study which aims to understand the personal meaning and significance of pets (cats and dogs) for people with Parkinson’s. They are looking for 30 people to participate in this study. You are eligible to take part if, as a Parkinson’s New Zealand member, you live in Auckland, have ever been diagnosed with Parkinson’s by a doctor and own a pet dog, cat or both. You will also need to be willing and able to complete a one-page questionnaire – which the researchers will use to select people to interview in person. Interviews will be conducted in January 2011 in your home and take up to 40 minutes. If you are interested in participating or have further questions about the study, please contact Parkinson’s New Zealand on its free-phone number 0800 473 463. Alternatively, you may contact at the University of Auckland on (09) 3737599 extension 81488 or email Sophie Wynne email@example.com December 2010
News & Research Gene explains coffee’s effects on Parkinson’s-study Researchers have found a gene that may explain why coffee may lower the risk of Parkinson’s for some people, and that might explain why some experimental drugs do not appear to be working. About a quarter of the population carries this version of the gene, and drug developers may be more successful if they test people for it, Haydeh Payami of the New York State Department of Health told the World Parkinson Congress in Glasgow. Only people with this particular version of the gene are likely to be helped by an experimental class of drugs designed to mimic some of coffee’s benefits, Payami told the meeting. “We are trying to explain why some people benefit from the effects of coffee in terms of reducing the risk of getting Parkinson’s disease and others don’t,” Payami said in a telephone interview. “But by extension I am proposing that this translates into explaining why drugs that are like caffeine that are in clinical trials are not succeeding,” she added. “The immediate application right now would be for people who already have Parkinson’s.” Currently, people with Parkinson’s with and without the specific gene are being included in the trials. Her team studied 4,000 people, half with Parkinson’s, using an Illumina “gene chip” to look at the entire genetic map of each volunteer, a technique called a genome wide association study. They identified a gene called GRIN2A that appeared to protect people who drank coffee from developing Parkinson’s.
Michael J. Fox foundation and other groups. GRIN2A is linked to glutamate, a compound that is suspected of killing the brain cells that die off in Parkinson’s patients. Glutamate can be affected by another compound called adenosine, and coffee interferes with this process. Drugs called adenosine A2A receptor antagonists have been tested against Parkinson’s and other neurological diseases. Payami said her team’s genetic findings may help explain the disappointing results of those trials so far. “If this gene really is interacting with coffee to boost neuroprotection, it should work in these clinical trials,” she said. Caffeine has been shown to protect nerves, but it has some unappealing side-effects, including jitters. Payami said the drugs are designed to reduce these side-effects. “I think it is about time we brought genetics into the design of clinical trials for Parkinson’s disease,” she added. “This work shows the potential of using genetic and epidemiological approaches to identify new risk factors for Parkinson’s disease,” said Margaret Sutherland of the NINDS, one of the U.S. National Institutes of Health. Source: Reuters
Clues found to early Parkinson’s deaths A study published in October found that people with Parkinson’s who scored worst on movement tests and those suffering from dementia or psychotic episodes such as hallucinations all faced a higher risk of dying earlier from the disease.
“About 25 percent of the population has the variant that boosts the protective effect of coffee,” Payami said.
Tremors by themselves were not a risk factor, and neither antipsychotic nor anti-Parkinson’s drug treatments affected survival, research published in the current issue of the journal Neurology concluded.
This made sense to Payami, whose team’s work is funded by the National Institute of Neurological Disorders and Stroke, the nonprofit
The 12-year Norwegian study looked at 230 people with Parkinson’s, 211 of whom had died by the end of the research.
“Remarkably, time of death for these people took anywhere from two to 37 years from diagnosis, so it’s important we try to identify those risk factors that lead to an early death so we can find ways to increase a person’s life expectancy,” lead researcher Dr. Elin Bjelland Forsaa said in a statement. Patients in the study lived an average of 16 years with Parkinson’s. The average age at death was 80 for men and 82 for women. Doctors are only able to treat Parkinson’s symptoms, usually by replacing dopamine with the drug L-dopa. No treatments currently exist to slow the progression of the disease. “Our findings suggest that treatments to prevent or delay the progression of movement problems, psychosis and dementia in people with Parkinson’s could help people live longer,” said Forsaa at Stavanger University Hospital in Stavanger, Norway. Dr. David Charles, a neurologist at Vanderbilt University Medical Center and chief medical officer at Vanderbilt Neuroscience Institute, said the finding that anti-psychotic medications did not affect mortality in Parkinson’s patients would mean doctors would be less hesitant to prescribe them. Anti-psychotic medications have been associated with increased mortality in Alzheimer’s patients. Source: CNN.com
Researchers refining test for much earlier detection of Parkinson’s High cholesterol levels predict heart disease. High blood-sugar levels can predict diabetes. But no single test exists to predict who will develop Parkinson’s. Now, a decade-long effort which started at Harvard University and continued in Ottawa, has yielded a method that, in principle, could identify people at risk of developing Parkinson’s. The story behind this finding shows why progress toward December 2010
News & Research preventing or curing Parkinson’s has been so slow. It also highlights how recent advances in Alzheimer’s research served as a model for what some researchers have already dubbed “the Ottawa test” for Parkinson’s. The disease is defined by the death of brain cells that produce dopamine, a chemical messenger between nerve cells. It’s the loss of dopamine-producing nerve cells that leads to Parkinson’s symptoms of rigidity, poor balance and uncontrollable shaking. Currently, the lack of a definitive test means physicians only reach a diagnosis by testing for — and eliminating — other diseases that can cause the same symptoms. Patients are also assessed according to the severity of those physical symptoms. But the method is so imprecise that it can lead to diagnosis only when the disease is already well advanced. An international team led by Dr. Michael Schlossmacher, a neuroscientist at the Ottawa Hospital Research Institute, believes it has identified signature proteins in the blood and spinal fluid that show the progression of Parkinson’s in the brain. The findings, presented at the World Parkinson’s Congress in Scotland, require further testing. But if proven, the protein markers could form the basis of a test to screen people for early signs of the disease. It might also allow scientists to study how the disease progresses and, perhaps, find drugs to slow or halt the process. “We in (the) Parkinson’s (field) are still stuck in the old days, where it’s only the clinical impression and examination that determines whether this is Parkinson’s or not,” said Schlossmacher, who’s also the Canada research chair in Parkinson’s at the University of Ottawa.
“We have to move forward to laboratory-based measurements that are more objective than subjective.” His research has attracted $40 million from the Michael J. Fox Foundation, which is funding a five-year study of a spinalfluid test to detect Parkinson’s, developed by Schlossmacher and his collaborators in Germany and the United Arab Emirates. Up to 700 patients with advanced Parkinson’s are expected to be enrolled in Canada, the U.S. and Europe. The large-scale trial would allow physicians and scientists from around the world to verify the accuracy and effectiveness of the test independently.
But because at least 15 per cent of patients with the disease don’t appear to have elevated levels of alpha-synuclein, the protein is not necessarily a definitive test. Indeed, it remains to be seen how many people who have it actually end up with the disease. But that is part of the research project. The idea for a Parkinson’s diagnostic test emerged nearly 20 years ago, when Schlossmacher was a postdoctoral fellow at Harvard. As a young researcher working with Dennis Selkoe, a leading Alzheimer’s expert, Schlossmacher was assigned to look for the signature proteins that could be responsible for Alzheimer’s.
Spinal taps, which involve inserting a needle into the lower back and withdrawing a small amount of fluid, have drawbacks. Many doctors and patients are nervous about the procedure, which they fear will be painful and cause headaches, infection, or nerve damage.
In 1992, Schlossmacher was the lead author of a paper that, for the first time, identified a protein called beta-amyloid as a physical hallmark of Alzheimer’s — a discovery that became the cornerstone of what is today a leading theory about how to treat the disease.
For that reason, Schlossmacher’s team is also at the early stages of developing a blood test for Parkinson’s, a much less invasive procedure. The experimental blood test has so far been tried in nearly 600 patients in Canada and the United States.
He recalled how Selkoe had urged him to branch out, saying: “You know, Parkinson’s is 10 years behind Alzheimer’s. Why don’t you look into it?”
Both tests aim to measure a telltale Parkinson’s protein known as alpha-synuclein, which is found at abnormally low levels in the spinal fluid of seven out of 10 patients with the disease — because, researchers believe, once it’s in a person’s nervous system, it collects in the brain in deposits that damage neurons and lead to the debilitating symptoms of Parkinson’s. Some people have a genetic predisposition to high alphasynuclein levels, and a blood test could look for high levels of the protein in the blood, where it would be detectable long before it began causing symptoms.
“It was my work there, in a very junior role, that inspired me to pursue Parkinson’s and become a neurologist,” Schlossmacher said. In 2001, after completing his neurology training, Schlossmacher took his mentor’s advice and began zeroing in on alphasynuclein as one of the proteins that likely plays a key role in Parkinson’s. In 2006, after leaving Harvard, Schlossmacher refined his research in Ottawa. He said the next four years could decide whether real progress is made in Parkinson’s diagnosis. “By then, we’ll know whether it’s really exciting and useful, or whether it was just a good idea.” Source: Vancouver Sun
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
Some of you may have already read this article in Upbeat. We have had such good feedback about it that we decided to include it in this edition of The Parkinsonian.
How to Read Health Content By Dr Alicia Wright
If you’ve just read a health-related headline that has caused you to spit out your morning coffee (“Coffee causes cancer” usually does the trick), on reading further, you’ll often find the headline has left out something important, such as, “Injecting five rats with really highly concentrated coffee solution caused some changes in cells that might lead to tumours eventually.” Study funded by The Association of Tea Marketing
The most important rule to remember is: don’t automatically believe the headline. It is there to draw you into buying the paper and read the story. Would you read an article called “Coffee pretty unlikely to cause cancer, but you never know”? Probably not. To avoid spraying your newspaper with coffee in the future, you need to analyse the article to see what it says about the research it is reporting on. Bazian (the company I worked for) has appraised hundreds of articles for Behind The Headlines on NHS Choices, and we’ve developed the following questions to help you figure out which articles you’re going to believe and which you’re not.
laboratory or on animals. These stories are regularly accompanied by pictures of humans, which creates the illusion that the miracle cure came from human studies. Studies in cells and animals are crucial first steps and should not be undervalued. However, many drugs that show promising results in cells in laboratories don’t work in animals, and many drugs that show promising results in animals don’t work in humans. If you read a headline about a drug or food “curing” rats, there is a chance it might cure humans in the future, but unfortunately a larger chance that it won’t. So there is no need to start eating large amounts of the “wonder food” featured in the article.
How many people did the research study include?
Your first concern should be the research behind the news article. If an article touts a treatment or some aspect of your lifestyle that is supposed to prevent or cause a disease, but doesn’t give any information about the scientific research behind it, then treat it with a lot of caution. The same applies to research that is yet to be published.
In general, the larger a study, the more you can trust it’s results. Small studies may miss important differences because they lack statistical “power” and are also more susceptible to finding things (including things that are wrong) purely by chance. You can visualise this by thinking about tossing a coin. We know that if we toss a coin the chance of getting a head is the same as that of getting a tail – 50/50. However, if we didn’t know this and we tossed a coin four times and got three heads and one tail, we might conclude that getting heads was more likely than tails. But this chance finding would be wrong. If we tossed the coin 500 times. i.e. gave the experiment more “power” – we’d be more likely to get an even number of heads and tails, giving us a better idea of the true odds. When it comes to sample sizes, bigger is usually better, so when you see a study conducted with a handful of people, treat it with caution.
Is the article based on a conference abstract?
Did the study have a control group?
Another area for caution is if the news article is based on a conference abstract. Research presented at conferences is often at a preliminary stage and usually hasn’t been scrutinised by experts in the field. Also, conference abstracts rarely provide full details about methods, making it difficult to judge how well the research was conducted. For these reasons, articles based on conference abstracts should be no cause for alarm. Don’t panic or rush off to your GP.
There are many different types of studies appropriate for answering different types of questions. If the question being asked is about whether a treatment or exposure has an effect or not, then the study needs to have a control group. A control group allows the researchers to compare what happens to people who have the treatment/exposure with what happens to people who don’t. If the study doesn’t have a control group, then it’s difficult to attribute results to the treatment or exposure with any level of certainty.
Does the article support its claims with scientific research?
Was the research in humans? Quite often, the “miracle cure” in the headline turns out to have only been tested on cells in the
Also, it’s important that the control group is as similar to the treated/exposed group as possible. The best way to achieve this is to randomly assign some people to be in the treated/exposed group and some people to
Parkinson’s Fact Sheet be in the control group. This is what happens in a randomised controlled trial (RCT) and is why RCTs are considered the “gold standard” for testing the effects of treatments and exposures. So when reading about a drug or treatment that is supposed to have an effect, you want to look for evidence of a control group, and ideally, evidence that the study was a RCT. With either, retain some healthy scepticism.
Did the study actually assess what’s in the headline? This one is a bit tricky to explain without going into a lot of detail about things called proxy outcomes. Instead, bear in mind this key point: the research needs to have examined what is being talked about in the headline and article. (Somewhat alarmingly, this isn’t always the case.) For example, you might read a headline that claims, “Tomatoes reduce the risk of heart attacks”. What you need to look for is evidence that the study actually looked at heart attacks. You might instead see that the study found that tomatoes reduce blood pressure. This means that someone has extrapolated that tomatoes must also have some impact on heart attacks, as high blood pressure is a risk factor for heart attacks. Sometimes these extrapolations will prove to be true, but other times they won’t. Therefore if a news story is focusing on a health outcome that was not examined by the research; treat it with a pinch of salt.
Who paid for and conducted the survey? This is a somewhat cynical point, but one that’s worth making. The majority of trails today are funded by manufacturers of the product being tested – be it a drug, vitamin cream or foodstuff. This means they have a vested interest in the results of the trial, which can potentially affect what the researchers find and report in all sorts of conscious and unconscious ways. This is not to say that all manufacturer-sponsored trials are unreliable. Many are very good. However, it’s worth seeing who funded the study to sniff out a potential conflict of interest.
Should you “shoot the messenger”? Overblown claims might not necessarily be down to the news reporting itself. Although journalists can sometimes misinterpret a piece of research, at other times the researchers (or other interested parties) over-extrapolate, making claims their research doesn’t support. These claims are then repeated by the journalists. Given that erroneous claims can come from a variety of places, don’t automatically assume they come from the journalist. Instead, use the questions above to figure out for yourself what you are going to believe and what you’re not. Source: Headlines Volume 87
Research Invitation: Speech Difficulties AND Parkinson’s Disease For some people with Parkinson’s disease, speech problems such as reduced volume or speech imprecision affect their ability to participate in everyday activities. The problem can be mild – just a quiet voice when you are tired – or quite severe, with family and friends noting that your speech is very difficult to understand. Dr Megan McAuliffe (NZ Institute of Language, Brain & Behaviour) and Professor Tim Anderson (Van der Veer Institute of Parkinson’s and Brain Research) are collaborating with colleagues in the USA and Australia to find out how these speech problems affect the daily lives of people with Parkinson’s disease. This research aims to develop a tool to measure the extent of these difficulties which will result in better communication and health outcomes for all people affected by Parkinson’s. A minimum of 200 people from across New Zealand are needed to complete questionnaires that relate to speech and Parkinson’s. If you choose to participate, it should take about an hour of your time. Those who participate should have Parkinson’s disease and some difficulty with their speech. The type of speech problem that you have could be very mild – for example, you might notice that your voice gets quiet and sounds breathy after you have been talking for a while. Your speech problems could be severe and cause you great difficulty communicating all the time, or you could be somewhere in between. The questionnaires can be completed on paper and returned to us (a pre paid envelope is supplied), or they can be completed via an online survey tool. If you think you might fit the criteria, and wish to participate or would like more information, please contact Louise Hughes at the New Zealand Institute of Language, Brain, & Behaviour. Louise will answer any of your questions and, if you decide to participate, arrange for you to login to the website or receive the packet of questionnaires via post. Thank you for your time – any assistance that people can provide for this research is greatly appreciated. Louise Hughes New Zealand Institute of Language, Brain & Behaviour University of Canterbury Private Bag 4800, Christchurch, 8140 Email: firstname.lastname@example.org Phone: (03) 364 2987 ext. 8264
News from around the country – Awareness Week 2010 Hawkes Bay
These are just a few highlights from our divisions.
Hawkes Bay had a fantastically successful street appeal, raising more than $12,000, and had a great double-page spread in their local paper.
Northland Parkinson’s Awareness Week kicked off in Northland with a Garden Ramble hosted by a member Elizabeth Swift and her neighbours in their new subdivision. There were 24 for people to wander around, and others could be viewed from the road. A Street Appeal was held on Friday, and with assistance from the Pakeke Lions, Onerahi Lions, Kamo High School students and members and friends most of the Whangarei area was covered.
Wanganui The Wanganui Division held Awareness Week at Trafalgar Square and had a great week . They also launched their Annual Christmas Raffle and this created a lot of interest with a quarter of the tickets sold. For the rest of November they also held displays outside various supermarkets and book shops throughout Wanganui as well as at the A & P Show and the Home Expo.
Waikato The Waikato Division held a very well attended Awareness Week seminar on 3 November, attracting 80 participants. The seminar was emceed by Colin Loft, Waikato Division Vice-President, and featured a panel of five speakers, who each presented on a different aspect of Parkinson’s. In the morning, Dr Debbie Young, Associate Professor in Pharmacology & Clinical Pharmacology from the University of Auckland presented “An Update on New Treatments”. This was followed by Dr Chris Lynch, neurologist from Waikato Hospital, who spoke about “Living with Medication”. Dietitian Sue Henderson began the afternoon session and spoke about “Maintaining Good Nutrition in PD”. This was followed by a presentation on “The Benefits of Exercise in PD” by Justin Stewart, Sport & Rehab Consultant from Waikato University UniRec Centre. The seminar was rounded off with a presentation by speech therapist Bianca van der Merwe from Waikato Hospital who spoke about “Managing Speech & Swallowing in PD.”
Wanganui Display and Raffle
Central Plateau This year’s Awareness Week included extensive local media coverage. As part of the Women in Business promotion earlier in the year the Division was given free advertising with The Radio Network, which enabled them to have coverage throughout Awareness Week. Tuwharetoa Radio did an interview with a local carer in Turangi; this was a very powerful and passionate interview. Five local newspapers ran articles, two of which were interviews with younger Parkinsonians. Local Rotorua television featured an interview with Cheryl Bogun, the Central Plateau Field Officer.
A highlight was the mid-week activities held at the beautiful Government Gardens Bowling Club, with thirty members attending. The day started with a morning tea, followed by lawn bowls. After lunch there a very informative talk was given by Russell Bridges, from the Public Trust, on Enduring Power of Attorney and family trusts.
News from around the country – Awareness Week 2010 Canterbury The Multiple Sclerosis and Parkinson’s Society of Canterbury’s first annual Footloose Fun Walk was full of family fun. Around 150 people participated on Sunday 7 November in North Hagley Park. While some chose to walk 2km, others pushed themselves to complete 5km and still others rounded the park twice for a 10km run. Over $1,500 was raised through registration fees and sponsorship.
National Office Staff Member Melissa Parkes and David Feslier
Kapiti-Horowhenua The Kapiti-Horowhenua Division garnered some fantastic media coverage with a great story by Committee Secretary Heather Meads about her experiences with Parkinson’s which was featured in the Kapiti News.
Canterbury Run Walk
The Marlborough Division had a great week, staging a raffle and displays in the local mall, at the library, at the local hospital and in Picton.
South Canterbury During Awareness Week Parkinson’s South Canterbury held displays at the Timaru Hospital, the Timaru District Library and the newly opened Disability Centre on Stafford Street (the main street). A page was devoted to Parkinson’s in the ‘Courier’, a local weekly paper. Before, during and after Awareness Week there were raffles at supermarkets in Timaru, Temuka and Geraldine. On Thursday 11 November there was a Healthy Learning Day at Geraldine with various organisations taking part and a Nordic Walking demonstration.
West Coast Awareness Week was marked on the West Coast by a great display in the window of their local ANZ bank, as well as by holding several raffles.
Nordic Walking Demo – South Canterbury
MAINTAINING HEALTH & WELLBEING As a carer you need time and space to tend to your health and wellbeing. Better health and wellbeing enables you to enjoy life and cope with any challenges that come your way. It also means you have more energy and capacity to provide effective care to the person you are supporting. Research shows that many carers suffer depression and anxiety. Carers also often suffer medical and psychological conditions, including chronic pain and injuries. Carers can neglect their own health issues due to lack of time and the inability to afford treatment. Many also have financial concerns. Many carers do not work or work fewer hours than they would like due to their caring responsibilities. Consequently, it is important that you, as a carer, find out what you can do to care for yourself and receive support when you need it.
WHAT CAN YOU DO TO MAINTAIN HEALTH AND WELLBEING? Understand & Accept Your Feelings There are no right or wrong feelings. Each carer responds to caring in his or her own way. Common feelings for carers include:
Include your relaxation and stress techniques in your daily routine. Even relaxing or walking for ten minutes a day can be beneficial.
Be Assertive Assertiveness techniques help you communicate your needs in a way that is respectful of your needs and of the person you are talking to. Assertiveness can help you say no or negotiate solutions to problems that are satisfying for everyone. Doing this can also enhance your relationships with the people around you.
Accept What You Can and Cannot Control Stress can increase when you feel you are not in control of what is happening around you. You cannot change other people and you may not be able to change your situation but you can control how you feel and respond. Focusing on you and what you can change or manage within yourself helps you to feel more in control. In turn, when you let go of trying to change others or controlling what you cannot, you leave more energy for yourself and for caring. This can also strengthen your relationships with the person you are supporting and with others around you.
Have Regular Respite
• Guilt • Frustration and anger • Love • Commitment • Fear • Grief and loss. Accepting your feelings and taking time to understand them can reduce stress for you. If they are overwhelming, find ways to manage them that are suitable for you.
Regular respite helps you to relax and recharge your batteries as well as to make time for other interests or people in your life. There is a range of respite available from two hours a week in-home to holidays or residential accommodation for two or more weeks for the person you support. Respite gives the person you support a break too and time to spend with other people.
Share The Care With Family and Friends
Take Time For Regular Relaxation and Stress-Breaking Techniques
Sharing the care with family and friends reduces the stress on you. It can also provide a change of companionship and further support for the person you care for.
Find ways to deal with stress that suit you. Some techniques used by carers include: • relaxation and meditation techniques • learning to manage positive and negative thoughts • exercise such as walking • talking to a non-judgemental person • spending time on an interest.
Asking for help is not always easy. However, family and friends are often willing to help when they know the impact on you. Be open to different ways of sharing the care. If your family or friends seem reluctant to help, find out why. When you know why, you can find ways to resolve or work around these issues. Source: Carers Australia
LOVE & OTHER DRUGS New Zealand release date - 1 January 2011 Love and Other Drugs is a film about Jamie Randall (Jake Gyllenhaal) a drug sales representative in the 1990s who falls in love with Maggie Murdock (Anne Hathaway) a free-spirited 26 year old with Stage 1 Parkinson’s disease. While the film is an insight into the world of pharmaceutical reps, it also provides a look into early onset Parkinson’s disease. WARNING: Love & Other Drugs is rated R16 and contains sexual content, nudity and drug use.
PARKINSON’S POSTERS This year for Parkinson’s Awareness Week we produced a new series of posters. These posters, titled “I live with Parkinson’s” feature New Zealanders with Parkinson’s. If you would like a set of these posters to display at your medical centre or at events, please email us at email@example.com
Parkinson’s New Zealand PO Box 11-067 Manners St Wellington 6142 Phone: 04 472 2796 Fax: 04 472 2162 Email: firstname.lastname@example.org Website: www.parkinsons.org.nz Freephone: 0800 473 4636 or 0800 4PD INFO
Chief Executive: Deirdre O’Sullivan Supporter Services Manager: Jennifer Rainville Financial Administrator: David Bailey Office Administrator: Melissa Parkes
Comtan is taken together with levodopa and increases the time Parkinson’s symptoms are effectively controlled.1-4 Ask your doctor if Comtan is right for you.
Comtan® is a prescription medicine for the treatment of symptoms of Parkinson’s Disease in people already taking a medicine called levodopa.
The tablet contains
200mg of entacapone. Check with your doctor if Comtan is right for you. Comtan is fully funded, prescription and doctor’s charges will apply. Do not take Comtan if you are pregnant, breastfeeding, have liver disease, a tumour on the adrenal gland (phaeochromocytoma),
weakness or a serious condition called neuroleptic malignant syndrome. Tell your doctor if you have severe kidney disease, are on dialysis, have heart disease, or you are on certain medicines for depression like MAO inhibitors, warfarin or iron. Common side effects are nausea or vomiting, diarrhoea, constipation, pain in the stomach, dry mouth, dizziness, vertigo, shakiness, headache, increased sweating, difficulty sleeping, unusual dreams, feeling depressed, reddish-brown urine. Rarely sudden onset sleepiness. If symptoms persist or you have side effects see your doctor. Always read the label and use strictly as directed. Comtan is the registered trademark of Novartis AG. Novartis New Zealand Limited, Auckland. For further information check the Consumer Medicine Information
If you would like to receive a free patient booklet entitled “10 Key Points you need to know about levodopa therapy”, please call our free phone number
[CMI] at www.medsafe.govt.nz
P AT I E N T
References: 1. Rinne UK et al. for the Nomecomt Study Group. Entacapone enhances the response to levodopa in parkinsonian patients with motor
on 0800 838 909. This leaflet focuses on how to get the most out of levodopa therapy in the long-term.
fluctuations. Neurology 1998,51,13091314. 2. Kieburtz K et al. for the Parkinson Study Group. Entacapone improves motor fluctuations in levodopa treated Parkinson’s disease patients. Ann Neurol 1997;42:747755. 3. Larsen JP et al. for the NOMESAFE study group. The tolerability and efficacy of entacapone over 3 years in patients with Parkinson’s Disease. Eur Neur 2003;10:137146. 4. COMTAN® Datasheet, Novartis New Zealand Limited. COM 0810-191-0812 TAPSNA 4369
The Quarterly Magazine of the Parkinsonianism Society of New Zealand Inc.