VOL. 15 – NO.4
Parkinson’s Awareness Week 1-7 November 2012 This year Parkinson’s Awareness Week focused on the importance of exercise for people with Parkinson’s. We launched Keep moving: an introduction to Parkinson’s and exercise, our new booklet and poster for people with Parkinson’s, and promoted it through the media. Across the country, our divisions held events and street collections to raise awareness of Parkinson’s and the services offered by the Parkinson’s New Zealand. We also trialled a national promotion using takeaway coffee cup lids.
KAPITI-HOROWHENUA – KEEP MOVING LAUNCH AT PARLIAMENT
WELLINGTON - “LOOK AT MY COFFEE FROM UNI THIS MORNING!”
OTAGO - BRAVING THE WEATHER FOR PARKINSON’S & SAUSAGES
You can read more about Awareness Week on pages 10-12.
INTERVIEW WITH DR BARRY SNOW
Dr Snow talks to The Parkinsonian about his ground breaking Clinical Trial In October the Minister of Health announced authorisation had been given for a Phase 1 clinical trial into the safety and clinical effect of pig cell transplants for people with Parkinson’s. The principal investigator of this trial is Dr Barry Snow. He recently spoke to The Parkinsonian about the trial. What is this new treatment? Deep within the brain is a structure known as the choroid plexus, which releases a natural mix of growth factors that make nerves grow. These growth factors can also protect the brain from injury and help repair damage. It is impossible to transplant human choroid plexus cells. However, Auckland Island Pig choroid plexus cells can be transplanted. Earlier research has shown that, once transplanted, the pig choroid plexus releases the right mix of growth factors and can reverse Parkinson’s-like symptoms in animals. Transplanting these pig choroid plexus cells has produced no adverse events, so the next step is to test them in humans.
The capsules are a little like Goretex in that they have perforations that let nutrients in and the growth factors out yet the perforations are too small to allow attack by the immune system. We know that the pig cells can last for years inside these capsules so the effect of this treatment is expected to be long term.
Is it safe to use pig cells? We have used pig tissue for medical treatments for many years, and they are particularly useful for heart valve replacements.
This sort of research is ground breaking. We know that in medical research we need to take major steps such as occurred when people were first given Deep Brain Stimulation for Parkinson’s or when heart patients were first given pig valve replacements. It is hoped that this treatment will be a major step in the treatment of Parkinson’s.
The main concern in transplanting cells from pigs is that the pigs may carry viruses that could be dangerous to humans. For the Parkinson’s study, the pigs will come from a herd that has lived in isolation on the Auckland Islands for over 200 years. The Auckland Islands are south of New Zealand near the Antarctic and the pigs have been tested and found to be free of dangerous viruses. They now live in special isolation near Invercargill and Auckland.
How does this new treatment work?
How do people get involved in the trial?
Nerves attract other nerves to grow towards them by releasing growth factors. In Parkinson’s the dopamine pathway nerves die back in the brain. The cause of this dieback is not known. The result is that the nerves become disconnected, and the person develops the symptoms of Parkinson’s. This new treatment aims to slow or stop the dieback of these nerves by transplanting pig cells that release growth factors.
We will approach patients already accepted for Deep Brain Stimulation surgery and offer the opportunity to have the capsules placed into the brain. We will assess the parkinsonism carefully. If there is no improvement after 6 months, then the person can have the Deep Brain Stimulation surgery they were originally offered.
The treatment involves surgically placing cells producing the growth factors into the brain to encourage the nerves that have died back to regrow. This type of treatment has been tried in humans, but the experiments so far have used only one particular growth factor. This trial will use the mix of multiple growth factors that are released by the part of the brain known as the choroid plexus. One of the problems of transplanting pig choroid plexus into humans is that the human immune system will destroy the foreign pig cells. This can be solved by putting the pig cells into tiny capsules that shield the pig cells from attack by the human immune system.
When will the trial be undertaken? Although the study has been approved by Medsafe and the Minister of Health, the next step is to present it to the Ethics Committee and the Auckland District Health Board Review Committee. Once approved has been gained, we will start the trials in 2013. Dr Snow is a Neurologist and Medical Director of the Adult Healthcare Service Group, Auckland District Health Board. The team performing the study with Dr Snow are Mr Arnold Bok, Neurosurgeon, Drs David McAuley and Mark Simpson, Neurologists, Lorraine Macdonald, Parkinson’s nurse, Greg Finucane, Neuropsychiatrist and Jamie Macniven, Neuropsychologist. They will work closely with the theatre team for the operation. The encapsulated cells are produced by the NZ company, Living Cell Technology.
A WORD FROM THE CHIEF EXECUTIVE
Tena Koutou Katoa I hope you are enjoying the new look of The Parkinsonian. I’ve had a number of people comment to me that they like the cleaner look of the magazine. You will see another new feature in this edition. To build on our 2012 Awareness Week theme of exercise we will include a strength or flexibility exercise that is suitable for most people with Parkinson’s in each edition. If you haven’t already received it, please ask your field officer for a copy of Keep moving: an introduction to Parkinson’s and exercise. This booklet was launched as part of Awareness Week and includes a fold out poster of exercises as well as general information on why exercise is so important for people with Parkinson’s. Awareness Week was again a success with many divisions holding information stands, street collections and other events to raise both awareness and much needed funds. Thank you to everyone who helped out. You can read about Awareness Week events around the country on pages 10-12. You will probably have heard about the clinical trial into a new treatment for Parkinson’s that Dr Barry Snow will be running in early 2013. This is ground breaking research that has received a
lot of media attention. Dr Snow was kind enough to grant an interview to The Parkinsonian which you can read on page two. We will report back to you on the findings of this trial as they become available. In 2013 we will again be giving out recognition awards. The details of the categories for these awards are below. We know that in the Parkinson’s NZ community there are hundreds of marvellous people worthy of recognition. Please think about nominating people you know. With best wishes for a happy and safe holiday season from all of us at Parkinson’s NZ. Nga mihi
2013 RECOGNITION AWARDS
Nominations are now open for the 2013 30th Anniversary Recognition Awards. Parkinson’s New Zealand is fortunate to have many inspiring people involved in our organisation. These awards celebrate the service given to our society by outstanding volunteers and recognise the achievements of members whose attitude is an inspiration to us all. The Recognition Awards were last presented in 2008 to mark our 25th Anniversary. With 2013 being our 30th year, we have decided to make these awards again. We are looking for nominations of members in the following categories: • The Ron Greenwood Community Spirit Award – recognition for a person with Parkinson’s who contributes to the wider community
• The Sir Peter Snell Keep Moving Award – recognition for a person with Parkinson’s who endeavours to remain active and takes part in exercise to the best of their ability • The Gus and Irene Fisher Carpe Diem Award – recognition for a person with Parkinson’s who ‘seizes the day’ through their passion for work, creativity or a hobby • The Sir David Levene Volunteer Award – recognition for a volunteer who gives outstanding service to the Society • The Andrew Dunn Volunteer Award – recognition for a volunteer who gives outstanding service to the Society Nominations close on Monday 4 March. Nomination forms are available on our website or can be requested by phoning 0800 473 4636 or from your local Division.
PARKINSON’S NEW ZEALAND | PO Box 11-067, Manners St, Wellington 6142 Phone 04 472 2796 | Freephone 0800 473 4636 (0800 4PD INFO) | Fax 04 472 2162 Email email@example.com | Web www.parkinsons.org.nz www.facebook.com/parkinsonsnz & Twitter @Parkinsonsnz Follow us on Facebook
NEWS & RESEARCH CANTERBURY RESEARCHERS LOOKING AT BRAIN CHANGES IN PARKINSON’S
Clinical Trials Unit reviewed the evidence from 39 physiotherapy studies involving almost 2000 participants.
A University of Canterbury brain research project is believed to be the first in the world using advanced technique to identify changes in the brain associated with dementia in people with Parkinson’s.
The studies included trials assessing a variety of different physiotherapy methods including general physiotherapy, exercise and dance.
The research group is using a technique called diffusion tensor imaging (DTI), which is an advanced form of MRI or brain scanning. The aim is to identify the subtle brain changes that occur prior to the cognitive symptoms of Parkinson’s being identifiable clinically.
• Walking speed
The project focuses on the thalamus, a structure at the centre of the brain, as it is involved in all aspects of function except smell. There is cellular degeneration in areas of the thalamus in patients with cognitive problems (i.e. mild cognitive impairment and dementia). The researchers have demonstrated for the first time that prior to the onset of dementia there is degeneration in the some areas of the thalamus but not others. In one of their groups of Parkinson’s patients, who had absolutely no discernible cognitive problems, they found significant cellular disruption in areas that were known to influence the first cognitive symptoms of Parkinson’s, executive function and attention difficulties. 4
Although this would not be a first line response for the identification of potential dementia in a person with Parkinson’s, the researchers hope the method would be applicable in wider clinical research settings. It could potentially enable early identification of those most at risk for dementia in order for treatment intervention to be applied as early as possible. Nadia Borlase, the Phd student working on the project, commented. “In terms of significance we are excited about it. It greatly expands what’s been done previously and, combined with what else is going on at the New Zealand Brain Research Institute, fits with what we’re finding in the rest of the brain.”
PHYSIOTHERAPY BENEFICIAL FOR PEOPLE WITH PARKINSON’S New results from a review of all the current research evidence suggest that physiotherapy is beneficial for people with Parkinson’s in the short term. The findings were published in September in the British Medical Journal. In the study, a team at the University of Birmingham
The team found that physiotherapy resulted in improvements in many areas including:
• Balance • The Unified Parkinson’s Disease Rating Scale (UPDRS) used by researchers to measure disability However, most of the trials were relatively small and over a short period of time (three months or less) so there is still a need for better evidence on the longer term effects of physiotherapy. The lead researcher commented: “This study suggests that physiotherapy may provide meaningful benefits to people with Parkinson’s in the short term. But more studies are needed to shed more light on how beneficial physiotherapy can be for people in the longer term.”
AS THE SEASONS CHANGE Studies using brain imaging technology (PET scans) suggest that the dopamine system in the healthy human brain has a seasonal rhythm. Specifically that the dopamine producing brain cells make and store more dopamine in autumn and winter. A new study reported in Neuroscience Letters examined whether the same pattern is seen in people with Parkinson’s. They found that it is. There are seasonal changes in dopamine synthesis in the brain of people with Parkinson’s. Again, more dopamine is made in autumn and winter. It is not just the current season that is thought to have an influence on the brain’s systems including the dopamine system. The season in which you are born has been linked to how your biological clock functions the rest of your life. So the researchers also compared the brain scans of people born in different seasons. They found that people born during winter and spring had a higher capacity to produce dopamine compared to people born during the summer and autumn. At this stage the finding is that there is an association between season and dopamine synthesis. The nature of the link, both in terms of its causes and implications is not known.
“This study suggests that physiotherapy may provide meaningful benefits to people with Parkinson’s in the short term. But more studies are needed to shed more light on how beneficial physiotherapy can be for people in the longer term.” THE PARKINSONIAN
“Two of the Nobel prizes awarded this year were for research which has relevance to Parkinson’s.” Their work has laid the ground work of further research that scientists hope to turn into new treatments for a number of conditions including Parkinson’s. One area of current interest is turning skin cells into brain cells. The University of Auckland
is one of groups doing work in this area. The Nobel Prize for Chemistry was awarded to US doctors Robert Lefkowitz and Brian Kobilka. The research they were honoured for has helped decipher the molecular details of how a body responds to its environment.
TAI CHI IMPROVES BALANCE IN PARKINSON’S A recent report in the New England Journal of Medicine found that tai chi training appears to improve balance in people with mild to moderate Parkinson’s. The primary aim of the study was to examine whether a tailored tai chi programme could improve postural stability in people with Parkinson’s. Research participants were randomly divided into three groups and assigned to three different exercise regimes. Each group participated in a 60-minute class that met twice weekly for 24 weeks. One group practiced tai chi, one did resistance-training and the third a stretching class. They found that the tai chi programme, as compared with the other two programme, was effective in improving balance. It was also improved functional ability and reduced the incidence of falls. The improvements were maintained three months after the intervention.
PARKINSON’S AND THE 2012 NOBEL PRIZES Two of the Nobel prizes awarded this year were for research which has relevance to Parkinson’s. The Nobel Prize in physiology or medicine was awarded to British researcher John Gurdon and Shinya Yamanaka of Japan. They won for discovering that mature, specialised cells of the body can be reprogrammed into stem cells. Gurdon was the first to show (in 1962) that the specialisation of cells is reversible. In a classic experiment, he replaced the immature cell nucleus in an egg cell of a frog with the nucleus from a mature intestinal cell. This modified egg cell developed into a normal tadpole. More than 40 years later, in 2006, Yamanaka discovered how intact mature cells in mice could be reprogrammed to become immature stem cells that are able to develop into all types of cells in the body.
When a cell receives a signal, such as the fight-or-flight hormone adrenaline, light or smells, that signal does not physically enter the cell. Yet somehow it initiates a whole lot of processes and changes within the cell. Something acts to sense the message on the outside and pass it inside. Lefkowitz and Kobilka are credited with determining how this happens. Specifically they discovered a group of proteins called G-protein-coupled receptors (GPCR) and figured out how they work. GPCR span the cell membrane with one end on the outside of the cell and the other inside. The outside end reacts to specific signals which cause the whole protein to change shape. The new shape of the inside end then acts as an internal signal. There are nearly a thousand known GPCR in the human body. They react to a number of different substances or stimuli and triggers and cause a wide range of different reactions within cells. One of the body’s signalling systems that uses this mechanism is dopamine. The dopamine receptor is a GPCR. The group of Parkinson’s drugs known as dopamine agonists (pramipexole, ropinirole, apomorphine) work by activating the receptor in the absence of dopamine. Glutamate is another neurotransmitter thought to have a role in Parkinson’s. Glutamate receptors are also GPCR. A number of research projects are looking at drugs that target the glutamate receptor as possible treatments for dyskenisias.
SOURCES: Parkinson’s UK, University of Canterbury, The Guardian, Michael J Fox Foundation, New England Journal of Medicine, Parkinson’s Disease News, Journal of Cell Biology
New website for Carers launched In early November Carers NZ launched a new online space for carers in New Zealand – CarersAir. This is a friendly online space for family carers: their place to watch, listen, read, share, and learn; to feel connected to one another; and to find sources of help. Guide for Carers. They will be able to ‘watch and learn’ how to care safely, and follow along to exercise and wellbeing programmes developed just for them. CarersAir also includes short filmed ‘virtual respite’ getaways for carers who can’t leave the house due to their responsibilities: people watching at a Paris café, a seaside walk, lying beneath a tree in the sunshine, and others. Carers who join the CarersAir network are asked to choose the topics they are most interested in. Every time they visit the portal, the latest resources about these topics will automatically appear in their CarersAir log-in space so they don’t have to spend time searching. If carers find something they especially like, they can save the video, audio interview, factsheet, article, or music clip as a ‘favourite’ in their private log-in area.
Often carers become isolated in their role; it can be difficult to attend support meetings or events in the ‘real world’. Many carers are not part of any formal network, and it’s common for those in 24/7 caring situations to feel removed from society. Loneliness and isolation is a major factor in carers’ high rate of depression. The new CarersAir portal was developed in partnership with many organisations from the public, private, and community sectors. By contributing information, funding, mentoring, and services, this collective has ensured that every New Zealand carer will be able to access all kinds of help directly from CarersAir. Many carers say they did not know early enough about important supports such as respite, needs assessment, the DPB-CSI benefit, or community-based services in their area. At CarersAir, they will be able to request Carers NZ’s free resource packs, and download the Government’s popular
CarersAir also features a blog, available to the public, that will explore caring, ageing, and health topics that aren’t always well addressed in the mainstream media. Carers NZ believes this blog will build a stronger voice for carers across society and in the media. Over time, Carers NZ intends to further develop CarersAir so carers can meet one another for sharing and learning purposes. The portal is linked to Carers NZ’s new case management system, which will help the organisation provide fast customer service to its network of more than 50,000 carers and organisations. Log-in information will also, for the first time in New Zealand, help us learn more about our country’s broad population of carers: who they are, their concerns, and what information or support they need to succeed in their important role. To learn more, and to create your own log-in, visit
NEW PARKINSON’S NEW ZEALAND ONLINE COMMUNITY Parkinson’s New Zealand now has an online community on HealthUnlocked. HealthUnlocked creates health-focused, online communities for patient organisations such as Parkinson’s New Zealand. You can find the community at parkinsonsnz.healthunlocked.com/. We hope it will provide a space where you can share your experience, support one another, and become better informed about Parkinson’s. Please join in the conversation by blogging, commenting and asking questions.
Advance Care Planning Advance Care Planning is the process of discussion and shared planning for future health care. It is becoming increasingly important as there are a growing range of medical treatments available and an increased recognition of the importance of patient involvement in medical decisions.
WHAT IS ADVANCE CARE PLANNING? A will is a legal document that sets out how, after you die, you would like your affairs to be settled. People include in their Will who will be given various assets, keepsakes or other things that are dear to them, like who they would like to look after any dependant children or their pets. Many people also include their wishes regarding their funeral and burial or cremation. Advance Care Planning is in effect a ‘living Will’. It sets out choices you have made about the sort of care you do and don’t wish to have at the end of your life. It will give your family/ whanau and the health care professionals working for you the information they need to make decisions about your care when you can no longer speak for yourself. Advance Care Planning isn’t just about making choices around death. It includes decisions you wish others to make on your behalf should you no longer able to make these choices yourself, for example if you had dementia or had suffered a head injury and were no longer considered competent to make your own decisions. Most people will have a different set of wishes around decisions that are made for them while they remain relatively active and are enjoying life, or if they are in a vegetative state with little quality of life. An Advance Care Plan enables you to detail your wishes for any eventuality. The process of Advance Care Planning also involves finding out about end of life care options and services and making choices about how you would like to be treated. Modern medicine allows life to be sustained even when there is little hope of the person returning to what they would consider to be a ‘good life’. An Advance Care Plan will allow you to decide when you would like the medical focus to change from life support to comfort care which involves treating pain and any other unpleasant symptoms while allowing a natural death to occur. An Advance Care Plan can be updated or changed as often as you wish while you are competent to make these decisions.
WHO SHOULD HAVE AN ADVANCE CARE PLAN? Everyone. No one knows what the future holds so it is important to make this plan before something happens that causes you to need it. However, for people with the diagnosis of a progressive condition like Parkinson’s, or for the people who care for them, this is especially important. For a plan to be legally binding, you must be considered competent when it is made.
WHO DECIDES THE TREATMENT I MAY BE GIVEN? In a life threatening health crisis, the doctor who is caring for you decides the available options for you treatment. In doing
this they take into consideration your current state of health, if the treatment is available, and how the benefits of the treatment outweigh the risks. It is then up to you to decide if you wish to accept the treatment or refuse it.
WHAT SORT OF PROCEDURES DOES THIS COVER? In the case of a serious illness, there are a number of procedures that can be done to prolong life. For example, cardio-pulmonary resuscitation (CPR), artificial breathing using a machine, or tube feeding. The decision to ask for these sorts of procedures to be carried out or withheld are often included as part of an Advance Care Plan. When deciding when you would like life sustaining procedures, if offered by medical professionals, to be administered or withheld, it is useful to consider the sorts of situations when you would want them undertaken or not. If a procedure is going to prolong your life so that you can enjoy a lifestyle you would be happy with, or that will enable to you regain a function you may have lost (eg the ability to walk or communicate) then you may decide in this instance to have the procedure. However, if the procedure will result in more pain and suffering, or will damage your body function then you may chose not to undertake it. By discussing how you feel about these sorts of procedures with the people you have involved in your care plan, you can be confident that should the time come that they are making decisions for you, you will be given the level of care you would have chosen for yourself. It is important to note you are not able to demand a specific treatment is provided. The medical person who is treating you will give the available options to the person who is acting on your behalf. They help the medical professional, based on your directives, to decide whether or not you undergo the procedures. However you are always entitled to be made comfortable with medication, regardless of whether you are being given treatment aimed at prolonging your life or not.
IF I CAN NO LONGER MAKE CHOICES FOR MYSELF, WHO SPEAKS FOR ME? As part of an Advance Care Plan you can nominate a person or persons who can speak for you. If the nominated person does not hold an Enduring Power of Attorney for you, they can’t make decisions for you. However healthcare professionals will listen to the information they provide on your wishes for your care and consider these when making decisions on how to act in your best interests.
“You may also wish to give someone an Enduring Power of Attorney for health and welfare, which is a legal document that allows them to make decisions on your behalf when you are no longer able to make them for yourself.” 8
You may also wish to give someone an Enduring Power of Attorney for health and welfare, which is a legal document that allows them to make decisions on your behalf when you are no longer able to make them for yourself. Once you have given someone an Enduring Power of Attorney for your health and welfare, their authority isn’t recognised for your care decisions until you are considered unable to make these decisions. You should ensure this person understands your Advance Care Plan.
HOW DO I MAKE AN ADVANCE CARE PLAN? • Talk to your chosen healthcare professional and ask them to help you write up your plan • Decide what choices you wish to make around end of life issues and what is important to you. If you had the choice, would you prefer to die at home, or be in a hospice or hospital?
MAKING YOUR ADVANCE CARE PLAN LEGAL Under the New Zealand Bill of Rights Act (section 11) you have a right to refuse treatment and it is a criminal offence for a healthcare provider to violate this right. For your plan to be legally binding there are certain criteria that must be met. • You must be competent when you make the plan or any amendment to it. To be considered competent you must be able to understand information given to you, be able to think about it and come to a decision based on this information and communicate that decision. • No undue influence or pressure from anyone else can be present if you make a decision to refuse treatment.
• Learn about the medical treatments that may be used to prolong your life and decide at what point you would like these treatments withdrawn
• Any directive in the plan needs to contain enough information to ensure that it is considered relevant in the situation it is being used in. If there is any doubt by the medical team that the situation you are in had not been considered when the plan was made, then they will make treatment decisions based on what they believe are in your best interests.
• Discuss your choices with your family/whanau, friends (if they are part of your Advance Care Plan) and the other health professionals who treat you, so everyone is clear what your wishes are
• If you wish to nominate a specific person to make legally binding decisions on your behalf, you must arrange an Enduring Power of Attorney which can be drawn up by your lawyer.
• Decide who you would like to speak for you, and convey your wishes should you be unable to make your own medical decisions.
Making an Advance Care Plan is an important part of managing your own health and is important for all of us to do. For more information on making a plan, including a list of questions to think about, go to advancecareplanning.org.nz .
Two half marathons, one month apart GET GOING...
KJ AND FRANK
If you or someone you know would like to raise funds for Parkinson’s New Zealand, please contact Louise on 04 472 2796 or 0800 473 4636 or firstname.lastname@example.org. The possibility of events you could undertake are endless and we are always here to help you with your fundraising efforts.
“I also want to run those marathons because I can. My father and tens of thousands of people like him have had that choice taken away from them.”
Katie-Jo (KJ) Liddle has set herself a huge challenge. To raise awareness and funds for Parkinson’s she is planning to run the Colville Connection, Coromandel half marathon in March 2013 and the Xterra Rotorua Festival half-marathon a month later. She has also set an ambitious fundraising goal of $2,000.
“I chose to do two as I just can’t do things by halves. So I thought two halves make a whole! Both of the events are off road terrain and they look to show two very different but equally spectacular, views of New Zealand. And to make it more intense, I chose two that were one month apart.”
To add to the challenge, KJ and her husband Chris have just taken over running the horse trekking centre at TuiGlen Farm in Kawerau, Bay of Plenty and had their first child in April. So why has KJ decided to do this?
To prepare KJ is training by running five days a week and then doing yoga and core strengthening exercises the other two days. Part of this is running with Frank in his buggy a couple of times a week. While out running little Frank (aka “the coach”) mostly sleeps but KJ has a more alert companion in her Border Terrier Stanley, who joins every run. Stan and KJ have clocked up nearly 300 kilometres so far.
“What I hope to achieve from doing the half marathons is raising awareness and money for Parkinson’s New Zealand. I have come to realise what a debilitating condition Parkinson’s is (I was aware of the tremors but not much else really) and what a crucial part the carers play. My father, who has Parkinson’s, needs 24/7 care so there is a lot of stress and pressure that my mum has to deal with, especially as dad suffers from dementia. “I also want to run those marathons because I can. My father and tens of thousands of people like him have had that choice taken away from them. Yes, I had major surgery in April. Yes, I will be working full time and have a young baby, but I will do it! Some days I feel like not running like when it’s raining or Frank has woken up a few times during the night, but I make myself run and I feel so much better after having done it. I will complete these marathons and all the hours of exercise that it takes me to get there because I can, and for my father and others like him who cannot any more.” KJ came to New Zealand in 2009. At first she was just travelling with no particular plan but then she met Chris at a show-jumping event and stayed. KJ’s family are still in the UK. Her father Frank (baby Frank was named for his Granddad) was diagnosed with Parkinson’s about 10 years ago. His health has deteriorated in the last year so in September KJ and baby flew back to the UK to spend some time with her family. It was this visit, possibly the last time she would see her father, that made KJ so determined to do something for Parkinson’s. She had also started jogging in May training for a 10k race in Cambridge, at the end of August. Having completed the race in 1hour 2 minutes she was ready for more. So why two half marathons?
Back in the UK “my Dad thinks what I’m is doing is great!” KJ’s husband has also been a great support and motivator. He and little Frank will be at both races to cheer KJ on. The Colville Connection, Coromandel is on 9 March 2013; the Xterra Rotorua Festival is 13 April. You can follow KJ’s progress on her Facebook page facebook.com/GetGoingForParkinsons2HalfMarathons1MonthApart
and support her through FundraiseOnline, fundraiseonline.co.nz/getgoingkjliddle/
GET GOING UPDATE In the June we shared Shelley Musk’s story about running the Paris Marathon for Parkinson’s. Shelley’s goal was to run five marathons before she was 50. Paris was her second. On 28 October Shelley completed her third, the Auckland Marathon. Once again Shelley chose to support Parkinson’s New Zealand through her run. She raised over $2,500.
AWARENESS WEEK EXERCISE One easy exercise to help prevent stiffness of the neck and shoulders is the neck rotation.
(1) Sit or stand with shoulders back and chin slightly tucked in (2) Slowly turn your head as far as you can without discomfort (3) Repeat 10 times in each direction
“These changes occur slowly and with the right sort of regular exercise you can significantly delay the onset.”
KEEP MOVING: AN INTRODUCTION TO PARKINSON’S AND EXERCISE Parkinson’s New Zealand has produced a new booklet and poster intended to encourage people with Parkinson’s to increase their activity levels and to make sure that you are doing exercise that is right for somebody with Parkinson’s. People with Parkinson’s often experience physical changes to their body which, over time, can lead to a forward bending posture and stiffness throughout the body in joints and muscles. These changes occur slowly and with the right sort of regular exercise you can significantly delay the onset.
Regular exercise is also important to keep your mind and body healthy. Unfortunately having Parkinson’s doesn’t mean you won’t develop other health issues and staying physically active will help keep you as healthy as possible. You should talk to your doctor before undertaking any exercise programme. It is recommended that everybody with Parkinson’s has regular physiotherapy reviews and a physiotherapist can provide a tailored exercise programme which will address your specific needs. The Keep moving poster illustrates some simple exercises you can do at home to increase your flexibility and strength. For a copy of ‘Keep moving’ call 0800 473 4636 or contact your local division.
The cups highlighted the recent research on the possible benefits of coffee for people with Parkinson’s (see October issue of The Parkinsonian) and directed people to Parkinson’s New Zealand’s website. Divisions received the stickered lids and then asked coffee shops to use them. Otago placed lids with seven retailers around the region, including four local BP 2Go outlets. In Canterbury the owner of Kiwi Coffee, a mobile coffee café, took their full allocation of 500 lids. GARY FROM KIWI COFFEE WITH CANTERBURY STAFF AND LIDS
COFFEE CUPS As part of Awareness Week this year we put a message on the lid of 10,000 cups of coffee around the country.
Other divisions reported that most shops were happy to take the lids with many requesting more. The lids soon made their way out into the public. In Wellington, the division placed 200 lids at the University resulting in Chair Pam Cook receiving a photo from her grand-daughter with the message – “Look at my coffee from uni this morning!” (see front cover).
PARKINSON’S NZ PRESIDENT MIKE LYNCH WITH HOST DR JACKIE BLUE MP
RUTH SUTHERLAND, OSCAR GERTREUER, BRIAN LAMBERT AND OTHERS LISTEN TO SPEECHES
PARLIAMENTARY LAUNCH Keep moving: an introduction to Parkinson’s and exercise was officially launched at an event at Parliament, 23 October. The reception, held in The Banquet Hall of the Beehive, was hosted by Dr Jackie Blue MP, Deputy-Chairperson of the Health Select Committee. Parkinson’s New Zealand President Mike Lynch introduced the speakers, who included Dr Blue and Oscar Getreuer, Parkinson’s Wellington and UPBEAT member. Oscar spoke of the importance of exercise for people with Parkinson’s from his own experience.
The event was well attended by MPs and other guests. We were particularly pleased to be joined by Dr Maurice Curtis, from the New Zealand Brain Bank. There was also a good contingent of staff and members from Wellington, Kapiti Horowhenua (see cover) and Wairarapa divisions as well as Multiple Sclerosis and Parkinson’s Society Canterbury. Unfortunately Jessie Snowdon, the Society’s physiotherapist who wrote the booklet, was unable to attend. However two of the people who reviewed the publication, Medical Advisory Panel member Dr Nisar Contractor and Janet Copeland from Physiotherapy New Zealand were present.
DISCOVER ADVENTURE Fancy walking the Inca Trail or horse trekking in Mongolia to raise funds for Parkinson’s? If you, a friend or a family member is interested in Getting Going internationally, please contact Parkinson’s New Zealand on 04 472 2796 or email@example.com or Discover Adventure on 021 445 871 for more information.
News from Around the Country
OTAGO – ANNIE FISHER, PAULA RYAN AND GLENDA WALLACE
TARANAKI – NORDIC WALKING DEMONSTRATION
NORTHLAND – KERIKERI HEALTH EXPO STAND
“...the benefits of exercise for maintaining good balance, posture, strength & flexibility.”
Otago held a well-attended seminar on Living with Parkinson’s. Speakers were field officer Paula Ryan, Annie Fisher (physiotherapist who specialises in Parkinson’s) and clinical psychologist Dr Glenda Wallace from the rehabilitation centre at Wakari Hospital. Annie Fisher spoke about the benefits of exercise for maintaining good balance, posture, strength and flexibility. She highlighted the Parkinson’s exercise classes that are held weekly throughout the Otago province.
Northland’s Awareness Week went well. They kick started with a Garden Ramble at The Palms Estate Retirement Village. They had a display board at the Whangarei Public Library and held a Street Appeal around the North. Field officer Vicki Sadgrove and committee member Bev Simmonds also attended the Kerikeri Health Expo held the week before.
The division also held a sausage sizzle (see front cover). It was a very cold day with a strong wind that blew away all their posters. The information sheets about Parkinson’s that they inserted inside every serviette were much more successful and a proved great way to spread ‘awareness’.
On Saturday 3 November, the Multiple Sclerosis and Parkinson’s Society of Canterbury held a Quiz Night at the Papanui Club. They had over 25 teams with close to 200 people participate. Questions were challenging and wide ranging but it was a tight game and the winning team had the highest score the Club had ever seen. The Society is grateful to all who came along and for the support of the Papanui Club.
TARANAKI For Awareness Week the Taranaki division had certified Nordic Walking instructor June Stevenson come down to take a two day introductory session on Nordic Pole walking. They had about 20 people participate in both days. The region turned on some beautiful weather which allowed them to enjoy this activity outside. Those who participated all found it to be enjoyable and hopefully some will go on to continue participating in this activity on a regular basis. Ron, a local member who has been using his poles for over five years came along to support and fine-tune his Nordic Walking. Ron recently completed the Daily News Half Marathon in 3 hrs 15 mins. A wonderful effort and great ambassador for this type of exercise.
WELLINGTON Wellington division were out and about in the region’s supermarkets and shopping malls. Their biggest collection was Queensgate Mall and Countdown High Street Lower Hutt. They were particularly pleased to have a large number of members from the Hutt Rotary Club help out.
CENTRAL PLATEAU Parkinson’s Central Plateau held a seminar in Rotorua on 8 November. Titled Mind and Body - a Rehabilitation Seminar attendees heard from author and counsellor Wayne Froggat on the management and prevention of depression in neurological disorders and physiotherapist Tara Martin on physiotherapy and the rehabilitation of people with neurological conditions.
WELLINGTON – KARORI COLLECTION, ANTON CLEMENTS & NERISSA MOORE
Published on Dec 2, 2012