ISSN 1177-0635MARCH 2019 VOL. 22 – NO.1

www.parkinsons.org.nz

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WHAT IS THE INSIGHT SUMMIT?The INSIGHT summit is the largest global online event for the Parkinson’s community, bringing you together with experts, academics, specialists, clinicians and other people living with Parkinson’s. This online event is a new way to gather insight and be part of the voice for change, collaboration and cure.

The INSIGHT summit is an online conference with over 50 high profile speakers presenting on Parkinson’s. There will be talks on the latest research, speeches from people living with Parkinson’s and updates on what technology can do for people with Parkinson’s. While the summit only runs for three days, there will be ticketing options for those that want to continue to access the presentations for up to a month afterwards.

The INSIGHT summit is the largest online event for Parkinson’s. This means that you, along with thousands of others globally, will be logging on to attend the summit. If you are watching the talks live, you will be able to ask the speakers questions and chat with other participants. If watching after the talks have concluded, you will still be able to see the conversations that took place during the talks.

Parkinson’s New Zealand is proud to be partnering with PD Warrior, Parkinson’s UK, the EPDA, Parkinson’s Australia, Shake It Up Australia Foundation and other Parkinson’s organisations, to bring you the INSIGHT Summit 2019. The summit will start on World Parkinson’s Day, 11 April 2019 and run for three days.

INSIGHT Summit 2019

CONFIRMED SPEAKERSMany health specialists around the world have been confirmed to speak at the INSIGHT summit. Here are some of the health professionals and researchers that will be speaking:

• Dr Terry Ellis, the Director of the Centre for Neurorehabilitation at Boston University (NY, USA), is a board-certified Neurologic Physical Therapy specialist, who conducts research and provides clinical consultations and education to health care professionals and people living with Parkinson’s.

• Maria Baretto, PhD, currently Chief Executive Officer of the Parkinson’s Disease and Movement Society in India. Dr Baretto has over 30 years of experience in the field of psychology and education.

• Dr Maria De Leon, a doctor and person with Parkinson’s. Author of Parkinson’s Diva: A Woman’s Guide to Parkinson’s Disease, a book that describes her experience with Parkinson’s in many aspects of her life—from doctor, caregiver, and person with Parkinson’s herself.

• Dr Natalie Allen, a researcher and Senior Lecturer in Physiotherapy at Sydney University (Australia). Her research focuses on exercise interventions to help people with Parkinson’s optimise their movement and manage any pain. She has published 23 journal articles and her work has been presented internationally.

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MATT EAGLES Diagnosed with Parkinson’s at seven years old, Matt has an impressive resume. Currently, he is leading the global project #ParkyLife and Head of Patient Advocacy or Engagement at Havas Lynx (EU). Matt is also the patient ambassador for Deep Brain Stimulation surgery for Medtronic UK, speaker at Wired Health, speaker at Founders Forum Financial Times, Live Health Summit Europe, and chair of #IMPatient, the first patient curated and led section at a commercial pharma conference. We are eager to hear Matt’s unique insight on living with Parkinson’s

WHO SHOULD ATTEND?There is something for everyone at the INSIGHT summit, whether you are living with Parkinson’s, a carer or family member, an allied health professional, researcher, student or other health professional wanting to know more about Parkinson’s.

SUPPORT PARKINSON’S NEW ZEALANDWhen purchasing your tickets for the INSIGHT Summit choose Parkinson’s New Zealand as your designated charity. By purchasing your tickets through our affiliate link, the proceeds from your tickets will be staying right here in New Zealand. Parkinson’s New Zealand is developing the outlines for two

exciting new projects that will be funded from the proceeds of the INSIGHT summit.

The first is a course for the newly diagnosed. People living with Parkinson’s need information about their condition, symptoms and treatment options. Knowing where and how to access services and support is vital for people to make effective and informed decisions about their health. This course will provide newly diagnosed members with timely, high quality information to make well informed choices for themselves.

The other project is a self-management programme. This programme is designed to help people with Parkinson’s gain confidence in their ability to control how Parkinson’s affects their lives. This programme will be facilitated by specially trained volunteers over a six-week period where topics such as connection, relationships, figuring out what is important in life, care of self and planning for the future are covered.

A LOCAL OPPORTUNITYWe encourage all of our members to make the most of this opportunity. We hope that people will use this event as a chance to connect with others in their local areas by getting together to watch some of the talks.

PARKINSON’S DIVAParkinson’s Diva: A Woman’s Guide to Parkinson’s Disease by Dr Maria De Leon covers the important basics of Parkinson’s and also shares personal and gender-specific concerns that young women with Parkinson’s face. Parkinson’s Diva is available for loan from the Parkinson’s New Zealand library. Contact us at info@parkinsons.org.nz if you are interested in borrowing this book about embracing your own style in your journey with Parkinson’s.

DR MARIA BARETTO

TAMMY RAMSAY-EVANSSTEVIE GREEKS

DR TERRY ELLISMATT EAGLES DR NATALIE ALLEN

MARCH 2019

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LIVING AND CARINGLiving and Caring: Coping with Parkinson’s is for people with Parkinson’s and the people who care for them, be it husbands, wives, civil union partners, children, extended family, friends or neighbours.

This book is not just about the practical aspects of caring, but also how people feel about it and how it affects their relationships. Both sides of the caring partnership are presented. It’s written from the perspective of people with Parkinson’s themselves and from the perspective of their carers too.

Parkinson’s New Zealand is excited to announce the upcoming launch of Living and Caring: Coping with Parkinson’s by Ann Andrews and Jennifer Dann, published by New Holland Publishers.

The launch of Living and Caring: Coping with Parkinson’s will be in time for World Parkinson’s Day on Thursday, 11 April.

Sadly, TV and theatre producer and author Ann Andrews died in 2017. Ann was diagnosed with Parkinson’s at age 57 and was well known in Parkinson’s communities around the world for her popular and inspiring books, Positively Parkinson’s and Grandma’s Brain. Living and Caring: Coping with Parkinson’s was always intended to be the final book in the trilogy.

Copies of Living and Caring: Coping with Parkinson’s, Positively Parkinson’s and Grandma’s Brain are available for loan from the Parkinson’s New Zealand library. Contact us at info@parkinsons.org.nz or 0800 473 4636.

Living and Caring: Coping with Parkinson’s

Ann Andrews

A WORD FROM THE CHIEF EXECUTIVE

As you will know, each year Parkinson’s organisations and people across the world observe 11 April as World Parkinson’s Day. I am delighted to announce that Parkinson’s New Zealand is a partner in the INSIGHT summit 2019 that we have helped develop with our friends at PD Warrior, Parkinson’s UK, the EPDA, Parkinson’s Australia and many more.

The INSIGHT summit is an online conference with high profile speakers presenting on Parkinson’s. Please share the news about the INSIGHT summit on pages 1 and 2 with all your friends, family, colleagues and networks.

Parkinson’s New Zealand will also be hosting a research seminar in Auckland on Tuesday, 28 May, The Science of Parkinson’s: Advances in Parkinson’s Research in New Zealand & Around the World. Simon Stott, Deputy Director of Research, Parkinson’s Australia, will provide an update on Parkinson’s research. Please see page 9 for more information.

On page 9 we also include an invitation for our UPBEAT members to attend the 2019 UPBEAT weekend in Whangarei. We hope to be able to reach more people with early onset Parkinson’s this year and we hope many of you will be able to come along to engage with world class speakers and meet other UPBEAT members.

I’m looking forward to attending the next World Parkinson Congress (WPC) in Kyoto, Japan with a team of New Zealanders in June. I will be representing New Zealand with the leadership of other Parkinson’s organisations and I will do everything I can to share information from the congress with people living with Parkinson’s in New Zealand.

I hope you enjoyed the summer weather, wherever you are.

Nga mihi nui

Tena- Koutou Ka-toa

Deirdre O’Sullivan

LivingCaring

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A GUIDE FOR CARERS AND PEOPLE WITH PARKINSON’S

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Ann Andrews worked as a writer, television and theatre producer, researcher, teacher and

crisis counsellor. She was diagnosed with Parkinson’s in her fifties, and authored Positively

Parkinson’s and Grandma’s Brain to help people with Parkinson’s and their families

understand the experience. Living and Caring was always intended to be the final book

in the trilogy. Ann received the Queen’s Service Medal for her community work in 2013.

Jennifer Dann is a Qantas award-winning journalist with over 10 years’ experience in

newspapers and radio. She is passionate about the work of unpaid family carers, having

grown up seeing her mum care for a severely intellectually disabled sister.

This book is for people with Parkinson’s and the people who care for them –

husbands, wives, civil union partners, children, friends and neighbours. Living and

Caring considers ‘caring’ in all its complexity and offers readers the opportunity to

share the experiences of both patients and caregivers and their reactions to a wide

range of challenges.It draws on the personal experiences of over forty people living with Parkinson’s;

sharing their journeys to help readers navigate theirs. The anonymous quotes in

Living and Caring allow people with Parkinson’s and their carers to be totally frank

about their feelings, struggles and insights. By covering the care partnership from both sides of the caring coin, readers can

be sympathetic to each other’s perspectives and work together on solutions for each

unique relationship and situation.It is organised by subject so readers can dip into topics as they become relevant,

as the progression of Parkinson’s varies so widely from person to person.

‘This book is a valuable resource for those that care. It shows

that we are ‘in this together’ and demonstrates the vital role

that carers play in the lives of people living with Parkinson’s.’– Steve Sant, CEO, Parkinson’s Australia

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NEWS & RESEARCH

SOCKS WITH SENSORS BEING TESTED TO DETECT EARLY SIGNS OF PARKINSON’SSpecial socks using a wearable fitness-tracking technology are being investigated in a pilot study to see if they can detect early signs of movement or walking disorders, like Parkinson’s.

Inspired by technology like Fitbit – wearable equipment that track fitness performance like daily steps and heart rate – researchers at Old Dominion University (ODU) in Virginia (United States), working in collaboration with neurologists at Sentara Healthcare, are using washable socks wired with special sensors capable of tracking movement, detecting step numbers and gait patterns that might reveal clinical evidence of problems.

Developed by Sensoria, these non-commercial fitness socks include a removable device capable of recording five to seven days’ worth of information, and sensors that can measure gait, acceleration and balance. Data are held in a small device attached to the socks, which can then be downloaded to a computer or sent to a smartphone or tablet.

A two-part pilot study is now underway. If the data seem accurate, a second-part is planned involving 60 older adults – a mix of people serving as controls and people with Parkinson’s, with both groups wearing the socks for seven days.

“The ‘silver tsunami’ of older adults over the age of 65 is expected to double over the next 20 to 30 years,” Steven Morrison, an ODU professor and director of research for the School of Physical Therapy and Athletic Training, said in a university press release. “We are going to have more older adults at risk for falls, so anything we can do to decrease that risk will be better for the population as a whole.”

If all goes well, the researchers plan to reach out to Parkinson’s groups to support further studies into this fitness technology and its ability to detect problems before symptoms are evident, or a need for changes in treatment given to someone with a Parkinson’s diagnosis.

Source: parkinsonsnewstoday.com

ENGINEERED STEM CELLS COULD BE NEXT PARKINSON’S TREATMENT, RESEARCHERS SAYCutting out a portion of or removing a gene linked to Parkinson’s protects against the formation of toxic protein clumps within brain cells, scientists have found.

This discovery has the potential to significantly affect the development of next-generation cell-based therapies, which involve injecting healthy cells into brain regions already affected by Parkinson’s. Researchers believe the approach may help relieve motor symptoms such as tremor and balance issues.

Findings were published in the study, “Engineering synucleinopathy-resistant human dopaminergic neurons by CRISPR-mediated deletion of the SNCA gene,” in the European Journal of Neuroscience in November.

Mutations in the SNCA gene have been linked to Parkinson’s, a condition characterised by the selective death of midbrain

dopamine-producing neurons due to clustering of a protein called alpha-synuclein, also known as Lewy bodies.

Transplantation of dopamine-producing neurons has proved useful in the management of Parkinson’s because it can reinnervate Parkinson’s-affected brain regions, restore dopamine levels, and provide symptom relief.

Clinical studies on the transplant of fetal mesencephalic (meaning “of or relating to the midbrain”) tissue into the striatum – a critical area of the brain involved in Parkinson’s – have shown that although some people saw their motor symptoms improved, others had transplant-induced dyskinesias – abnormal, uncontrolled, and involuntary movement.

Importantly, transplanted tissue (grafts) older than 10 years developed Lewy bodies, which reduced the symptomatic benefit to the patient.

“These clinical observations highlight the need for cell therapies that are resistant to the formation of Lewy bodies…Such disease-resistant cells will be particularly important for people with young-onset Parkinson’s or genetic forms of the condition with substantial alpha-synuclein burden,” the researchers wrote.

The team used a gene editing tool known as CRISPR-Cas9. This technique allows scientists to edit parts of the genome by removing, adding, or altering specific sections of the DNA sequence.

Using stem cells, researchers created two distinct cell lines: one with snipped-out portions of the SNCA gene and another without the SNCA gene.

These stem cells were then transformed into dopamine-producing neurons and treated with a chemical agent (recombinant alpha-synuclein pre-formed fibrils) to induce the formation of Parkinson’s-related Lewy bodies.

The team reported that wild-type neurons, or unedited brain cells, were fully susceptible to the formation of toxic aggregates, while engineered cells were significantly resistant to Lewy body formation.

“We know that Parkinson’s spreads from neuron [to] neuron, invading healthy cells. This could essentially put a shelf life on the potential of cell replacement therapy. Our exciting discovery has the potential to considerably improve these emerging treatments,” Tilo Kunath, PhD, group leader at the Medical Research Council’s Centre for Regenerative Medicine, University of Edinburgh, and senior author of the study, said in a press release.

By finding a way to “shield” cells from Parkinson’s molecular changes, scientists may have opened the door to the development of cell therapies capable of diverting time’s negative effect on transplanted tissue.

Source: parkinsonsnewstoday.com

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MONITORING WITH PKG SYSTEM HELPS CHANGE CARE IN NEARLY A THIRD OF PARKINSON’S CASESContinuous monitoring of movement symptoms using a wearable device called the Personal KinetiGraph (PKG) may help clinicians make more appropriate treatment choices for people with Parkinson’s, according to a clinical study.

The study, “Qualitative Evaluation of the Personal KinetiGraph Movement Recording System in a Parkinson’s Clinic” was published at the Journal of Parkinson’s Disease in February.

The PKG system, developed by Global Kinetics Corporation, is a wristwatch-like device worn on the side of the body that is most affected by Parkinson’s and continuously collects people’s movement data – such as tremor, slow or involuntary movements, motor-skills fluctuations, and immobility—providing information to the person’s doctor.

Researchers at the Parkinson’s Institute and Clinical Center in California (United States) have evaluated the impact of using continuous objective movement measurement with the PKG system in the routine clinical care of people with Parkinson’s. The Parkinson’s Institute began using the PKG system in December 2015 as an additional evaluation method on top of clinical visit history and examination.

Between December 2015 and July 2016, 89 people with Parkinson’s were selected to use the PKG system as part of their routine clinical evaluation and follow-up, 81 of whom were included in the final analysis. Forty-five people had one PKG, and 44 had two PKGs, 10 of whom went on to have three PKGs completed.

Doctors provided their collective views on the impact of the system on patient care in a total of 112 surveys. Of these, 41% indicated that the PKG provided additional information to the doctor. However, 59% reported that the system failed to provide additional information.

Of the surveys reporting that the PKG did provide additional information, 78% indicated the data provided by the PKG system resulted in changes in patient care, while 22% revealed “the PKG provided additional information but that no alteration in patient care occurred based on this information,” according to the researchers.

The personalised monitoring system was found to provide new and precise information on daily off time – the period when medication is not working efficiently – in 50% of the cases.

“Physicians adjusted treatment nearly a third of the time based on the real-time clinical status captured during objective continuous monitoring outside the clinic setting,” the researchers wrote.

These results support the previous recordings collected on people using PKG by research teams in Australia and New Zealand and demonstrate the real-world benefits that PKG may provide to people with Parkinson’s and clinicians in their continuing effort to optimise Parkinson’s therapy and manage symptoms effectively.

Source: parkinsonsnewstoday.com

If you or someone you know would like to raise funds for Parkinson’s New Zealand, please contact us on 04 801 8850 or 0800 473 4636 or getgoing@parkinsons.org.nz.

We have an information pack on how to get started, fundraising ideas, instructions for setting up a givealittle page and more.

The possibility of events you could undertake are endless and we are always here to help you with your fundraising efforts.

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CARERS CORNER

If it has become difficult for your loved one to do their hair and makeup, we have some ideas on how you can help them look good and feel better.

Look Good, Feel Good: How to Help

If grooming has become difficult for your loved one, encouraging and helping them can help them maintain their dignity and really boost their self-esteem.

When assisting your loved one with grooming, be sensitive to their feelings. For many, having help with these tasks can be embarrassing. Depending on your loved one’s ability you may be able to assist them with these tasks instead of having to do it all for them. Keep reading for some tips on how to approach these seemingly small things in life.

HAIR CARECertain hairstyles can seem intimidating. Encourage your loved one to try something simple to start. They may surprise themselves!

• Ask your loved one if they have a preference for their hairstyle. If they make a request that is unfamiliar to you, get them to talk you through the steps.

• Look on YouTube for some tutorials if you need further help. There is a huge variety of videos available for ideas and tips.

• Be gentle! As we age our hair becomes thinner and more delicate. Make sure when brushing longer hair, you start at the tips and work your way up to the roots.

• When using hair products, less is more. The more product you use, the more your loved one will need to wash their hair.

• If washing and drying hair has become difficult for you both to manage, and your budget allows, a weekly trip to the hairdresser to wash and style hair will help your loved one feel good and make life a little easier for you. This can also be nice to do before a special occasion.

• On the next trip to the hairdresser, ask them to show you how to maintain your loved one’s chosen style at home. Many hairdressers will do home visits, if that suits you both better.

QUICK TIPS FOR YOU AND YOUR LOVED ONE• Part your hair differently to highlight different features

• Go shorter to add volume to thinning hair

• Shorter hair takes less time and effort to dry and style

• Avoid gels and other heavy products as this accentuates thinning areas

• Hands-free hairdryers can be mounted on the wall to make drying a breeze

MAKEUPIf your loved one wants to try out these tips, they should try sitting down during makeup application.

• Skincare is the first step to good makeup. Make sure the skin is clean and well hydrated.

• Tools of the trade. Most makeup can be applied with fingers, and this may help smooth application if you have tremor. Brushes are nice to use when doing someone else’s makeup.

• Lighter, dewy bases are the most flattering as we age. Try a hydrating BB or CC cream.

• For under-eye circles and discolouration use a creamy concealer one shade lighter than your base.

• Avoid heavy powders, these can dry out skin. Instead opt for finely milled, translucent powder and dust gently over the face, or go without!

• There are many eye makeup looks you can try. But for a natural, everyday look, keep tones peachy as this is universally flattering. Sweep colour with a fluffy, eyeshadow brush slightly above the eyes natural crease to lift the eyes appearance.

• Finish the eyes with a lengthening mascara. This will need a steady hand, resting your elbow on the counter can help application. Remember to brush the eyebrows, and if they need it, gently fill in any gaps with your natural shade.

• Apply a small amount of a peachy tone blush to the upper cheek bones. Start mid-way down and sweep back toward the ear, a universally flattering style.

• The finishing touch. Lipstick! Lipstick is an easy way to elevate any look. Have fun with shades and pick one that works for you.

• If you struggle with lipstick “bleeding,” line your lips with a matte lip pencil before applying a cream-based lipstick. Cream-based lipstick has more staying power than gloss and won’t dry lips like a matte formula will.

• To help refresh your look, keep an eye out for free makeover opportunities at your local department store or pharmacy.

When experimenting with how we look, it’s important to remember that there are no hard and fast rules. The most important thing is that we like the way we look. These recommendations are for natural, neutral looks, but there is nothing stopping you or your loved one from wearing bright green eyeshadow, or dying your hair pink if you want to. Express yourself!

THE MEDICAL TERM FOR SLOWNESS OF MOVEMENT IS BRADYKINESIA.Taken from the Greek words meaning ‘slow’ and ‘movement’, the term was first used by Dr James Parkinson in 1817.

Bradykinesia is one of the cardinal symptoms of Parkinson’s. You must have bradykinesia plus either tremor or rigidity for a Parkinson’s diagnosis to be considered.

Bradykinesia is essentially slow or difficult body movement.

There are varying degrees of bradykinesia, and the condition can often mean that everyday movements, such as lifting arms or legs, take much longer.

Bradykinesia can affect one limb, one side of your body, or your whole body, which can make you unnaturally still. The condition often varies from moment to moment. This can be frustrating, as good quality of movement can quickly be followed by poor quality.

As movements become slower and more difficult, you tend to move less and so Parkinson’s impacts more on daily life. The general effect of bradykinesia is that it takes more time and effort to complete daily tasks, which can result in fatigue.

Reduced co-ordination and surprisingly, increased muscle tone, may contribute to bradykinesia. You may start to take slower

steps for example. Your muscles have not become weaker, they are just reacting more slowly.

You may hear the terms akinesia and hypokinesia used in relation to bradykinesia. Akinesia means a loss of movement, for example, lack of facial expression or rarer eye blinks. Hypokinesia refers to movements that are reduced in scale, such as the small handwriting (micrographia) or soft voice (hypophonia) associated with Parkinson’s. It is possible to experience all of these conditions.

BRADYKINESIA DIAGNOSIS If you suspect you, or someone you know, is experiencing slowness of movement, it is important to see a doctor. Bradykinesia is a feature of a number of conditions, so it needs to be accurately diagnosed.

Bradykinesia causes difficulties with rapidly repeated movements. To make an assessment, the doctor will ask you to perform rapid, repetitive hand movements, such as tapping your finger and thumb together, gripping and releasing, or moving your palms up and down. Or you may be asked to rapidly tap your foot up and down.

The doctor will investigate your family history and also your medical history, since certain medications can cause slowness of movement. In a few cases, the assessment may involve a test such as an MRI scan, to exclude the possibility of stroke or tumour.

MARCH 2019

Slowness of Movement

FACT SHEET

Slowness of movement is one of the main symptoms of Parkinson’s alongside tremor and rigidity (stiffness). Not everyone with Parkinson’s will experience all of these symptoms.

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FACT SHEET – CONTINUED FROM PREVIOUS PAGE

HOW SLOWNESS MAY MEAN THAT SOMEONE HAS PARKINSON’S?In Parkinson’s, slowness of movement happens in different ways:

• Reduction of spontaneous movements (such as swinging your arms when you walk)

• Fine motor co-ordination is reduced (for example, handwriting becomes smaller)

• Changes in walking (such as short shuffling steps)

• Episodes of freezing, or periods of immobility

• Difficulty turning over in bed or rising from a chair

• The appearance of abnormal stillness or a decrease in facial expressiveness

• It takes longer to do things

This translates into difficulty performing everyday functions, such as buttoning a shirt, cutting food or brushing your teeth. People who experience bradykinesia may walk with short, shuffling steps. The reduction in movement caused by bradykinesia can affect a person’s speech as Parkinson’s progresses.

Bradykinesia can be particularly frustrating because it is often unpredictable. One moment you can move easily, while in the next moment you many need help.

WHO CAN HELP?Your doctor will usually be your first point of contact and can help by adjusting your medication. He or she might also refer you to a doctor who specialises in movement disorders.

Bradykinesia generally responds well to medication, especially in the early stages of Parkinson’s. As with all Parkinson’s medication, treatment is very individual. What works for one person may not work for another, so your doctor may try several approaches to see what works best for you.

Once diagnosed, your doctor will probably refer you to a physiotherapist or occupational therapist who will look at your symptoms and recommend exercises and techniques to help with slowed movement.

• Physiotherapists can give advice on how to improve the quality of movement during everyday activities, and suggest exercises to maintain or improve muscle tone.

• Occupational therapists can also help with changes to your routine to help you stay mobile and independent.

• Both occupational therapists and physiotherapists can advise on devices and aids to help with mobility.

The type of therapist you are referred to will depend on where you live, the resources available and your individual needs.

Last updated March 2019

Source: Parkinsons.org.uk | edpa.eu.com

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The 2019 UPBEAT weekend will be held Friday 12 July to Sunday 14 July. Hosted by our Northland Parkinson’s Action Group, the event will be held at the Distinction Hotel, 9 Riverside Drive, Whangarei.

If you haven’t been to an UPBEAT weekend before you should consider coming to this one. If you have been before, we would love to see you again.

A registration form has been sent out to our UPBEAT members. If you have not received one and feel you should have, please contact National Office on UPBEAT@parkinsons.org.nz for more information or to receive a copy.

The UPBEAT weekend is open to people diagnosed before the age of 60 who are currently under 65 years of age. The cost is $140 per person which includes all meals and 2 nights’ accommodation or $70 per person, for those who do not require accommodation. Please contact us if your financial situation would prevent you from attending as we may be able to help. For more information email us UPBEAT@parkinsons.org.nz

Accommodation is limited so please fill out your forms and get them back to us as soon as possible to ensure your booking. We may organise a bus from the Auckland airport if numbers permit, please indicate you are interested when filling out the form.

We are working on the programme for the weekend. There will be world class speakers discussing a range of topics from the latest research findings to practical tips about what you can do to help yourself the most.

The weekend is made up of various talks, exercise classes and social activities. It’s a fantastic opportunity for you to learn more about Parkinson’s and what you can do to live better with Parkinson’s. It’s also a chance to meet people who are going through similar experiences to you and make connections with people from across the country.

UPBEAT WeekendFollowing on from our last very well attended UPBEAT weekend in Hamilton, we are excited to announce that registrations are now open for the 2019 UPBEAT weekend in Whangarei.

DO YOU HAVE A TOPIC TO SHARE?Member designed content will also be featured in the weekend. We are looking for people to give us expressions of interest of topics they can present on. Presentations can be on anything related to Parkinson’s. To let us know a topic you would like to present on, or for more information, please email UPBEAT@parkinsons.org.nzWHANGAREI FROM ABOVE, TAKEN ON ONE OF THE

PARKINSON’S NORTHLAND’S WALKING GROUP TRIPS

DISTINCTION HOTEL

UPBEAT WEEKEND 2017

In the feedback we have received from past weekends many people have said being around other people who ‘understood’ is a highlight of the weekend. Partners and family members are also encouraged to attend the weekend.

We will release a programme and more in-depth information closer to the event.

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Karate in ChristchurchExercise as Medicine NZ held its first Karate for Parkinson’s group in Christchurch on Thursday, 31 January. The class was delivered by Renzie Hanham, who is an 8th degree black belt in Seido Karate, one of three senior instructors in the world, and an inductee to the World Martial Arts Hall of Fame.

The Karate for Parkinson’s programme is a six-week introduction to Karate specifically for those with Parkinson’s. The programme focuses on enhancing body awareness, boosting reaction time, improving coordination, emphasising big movements, improving agility and using weight shifts to help with balance and falls prevention. They also get you punching pads for a bit of fun!

“It’s fair to say that it’s gone quietly ballistic in the Seido Karate fraternity,” said Exercise as Medicine NZ’s Tim Webster.

Exercise as Medicine NZ is looking to start more classes around the country. You can keep an eye on what they’re up to on their Facebook page facebook.com/eamaotearoa

Connect at the World Parkinson Congress 2019Calling all Parkinson’s New Zealand members attending this year’s World Parkinson Congress! We want you! Parkinson’s New Zealand would like to create a contact group of attendees so that we can support one another at this year’s Congress.

The 5th World Parkinson Congress will be held in Kyoto, Japan, 4-7 June 2019. The Congress is open to the international Parkinson’s community as a whole. Whether you are a person with Parkinson’s, family member or health professional, all are invited. The aim of the Congress is to provide an international forum to learn about the latest scientific discoveries, medical practices, caregiver initiative and advocacy work related to Parkinson’s.

We will connect New Zealanders attending the congress to keep you in the know of any World Parkinson Congress updates. We can also assist with extra support. This could help with the planning phases of the trip. Who is best to fly with? Where is

the best place to stay? Meeting points throughout the day to connect with familiar faces.

Parkinson’s New Zealand’s Chief Executive Deirdre O’Sullivan will be representing New Zealand along with leaders of other Parkinson’s organisations. Aucklander Andy McDowell will also be attending the Congress this year as a World Parkinson Congress Ambassador. Andy will be presenting at the Congress.

Please email through your plans and details to info@parkinsons.org.nz so we can connect at this World Parkinson Congress.

THANK YOU

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World Parkinson’s DayIt’s been over 200 years since English physician James Parkinson first described the condition named after him in “An Essay on the Shaking Palsy”. World Parkinson’s Day commemorates the birthday of James Parkinson. The son of an apothecary/surgeon, James Parkinson was born on 11 April 1755. World Parkinson’s Day is now held on 11 April each year.

POETRY FOR PARKINSON’SParkinson’s Life is recognising World Parkinson’s Day by calling the international Parkinson’s community to submit an original poem which explores any aspect of Parkinson’s. Some of the topics you could touch on include symptoms, lifestyle, taboos or caring for a loved one.

The winning entry will be published in Parkinson’s Life on World Parkinson’s Day, 11 April 2019. They will also feature an interview with the author, where you can share your individual experience of Parkinson’s. They are taking submissions online, if you would like more information on the how to submit visit the Parkinson’s Life website at parkinsonslife.eu

On World Parkinson’s Day Parkinson’s New Zealand will be hosting local events, talks and lunches to acknowledge the progress that has been made in diagnosing, understanding and treating the condition that bears James Parkinson’s name.

Here are some of the World Parkinson’s Day events that are planned around the country.

• Parkinson’s Wairarapa will hold a World Parkinson’s Day event with a guest speaker and an afternoon tea. For details contact Parkinson’s Wairarapa Community Educator Jane Flowerday on Jane.Flowerday@parkinsons.org.nz

• Parkinson’s Otago will host a presentation by Speech Language Therapist Tessa Blake. Contact Parkinson’s Otago Community Educator Paula Ryan for details at Paula.Ryan@parkinsons.org.nz

Contact your local Parkinson’s Community Educator to see what events are taking place in your area or call 0800 473 4636.

Parkinson’s New Zealand is proud to present The Science of Parkinson’s: Latest Advances in Parkinson’s Research, an event for people with Parkinson’s and their carers, supporters and health professionals.

This prestigious event will take place on Tuesday 28 May 2019 at the Greenlane Christian Centre, Marewa Road, Greenlane, Auckland.

Doors will open at 10.30am and we invite you to join us for light refreshments.

The formal presentations will begin at 11:00am. Guests will then enjoy a light lunch before participating in a panel, chaired by neurologist Dr Barry Snow. There will be an opportunity to mingle with the panel and other attendees following the official presentations. We expect the event to finish at around 2:00pm.

Tickets are available online via the iTicket website at www.iticket.co.nz.

For any enquiries please contact Northern Community Engagement Advisor Karen Schade at karen.schade@parkinsons.org.nz or call 0800 473 4636.

The Science of Parkinson’s: Advances in Parkinson’s Research, in New Zealand & Around the WorldThe Cure Parkinson’s Trust (UK) Deputy Director of Research Simon Stott and Neurological Foundation Deputy Director Maurice Curtis will discuss the latest findings in Parkinson’s research on Tuesday 28 May 2019.

SIMON STOTT

THE PARKINSONIAN

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NATIONAL OFFICE VOLUNTEERSWe would like to thank all of our volunteers who have helped us recently in our National Office. One of our volunteers is Hilary Bartle who comes to National Office once a month to help. When asked why she decided to volunteer for Parkinson’s New Zealand, Hilary responded, “Because I’m wisely selfish, doing things for others makes me happy.” Hilary also has a personal connection to Parkinson’s through her mother. If you are interested in becoming a volunteer in our National Office or in your local area, please contact us at info@parkinsons.org.nz

HAWKE’S BAY GARDEN PARTYParkinson’s Hawke’s Bay is holding a Garden Party at the beautiful and historical Duart House on Sunday, 28 March from 1:00pm to 4:00pm. Duart House is located on Duart Road in Havelock North. The day will be filled with fun and games for the whole family. There is a gold coin entry fee, which will go towards Parkinson’s Hawke’s Bay’s services. There will be a Devonshire tea, stalls and music at the event. The stalls will include plants, quilts, flowers, wood turners, wooden planters, boutique textiles, ceramics, face painting, games and more. If you’re in the area, come along for a fabulous day!

COUNTERPUNCH IN ROTORUAParkinson’s Central Plateau is excited about the arrival of Counterpunch to Rotorua. Counterpunch is a boxing programme that is offered in several locations around the country. The inaugural Rotorua class and presentation were held on Wednesday, 23 January, at 10:30am. There was a great turn out of over 30 people, who thoroughly enjoyed the day.

We are so grateful to our volunteers, sponsors and funders from around the country. Thank you for helping us to make a difference in people’s lives.

NEWS FROM AROUND THE COUNTRY

PEDAL FOR PARKINSON’S WAIRARAPAOn Sunday 17 February cyclists congregated at the Martinbourough Square before being shuttled to the start line. They then set off on an intrepid ride across the beautiful, rugged Wairarapa coastline to raise funds for Parkinson’s Wairarapa.

The annual Pedal for Parkinson’s challenge is part of the Wairarapa’s Huri Huri Bike Festival.

There were two courses available, the long course starting at Pahaoa, which was meant to be 64km, was changed to 58km due to the Ngawi Fishing Competition, and the shorter course which started at Ngapotiki.

This event was well received by participants and locals alike. The finish line was teeming with supporters and volunteers with food and beverage offerings. One local cyclist, Philip Orchard, thoroughly enjoyed himself on the day.

“Absolutely brilliant event, with great organisation, scenic course and a rare easterly tail wind. Thanks Catherine and family, volunteers, land owners, shuttle drivers, fellow participants, and anyone else involved I haven’t mentioned,” Philip said.

We would like to thank Huri Huri for organising the event, members of Parkinson’s Wairarapa and Brian Lambert for highlighting Parkinson’s in such an inspiring way.

TOM FINLAY, WHO COMPLETED THE RIDE FIRST, IN 2H 45M HILARY BARTLE

COUNTERPUNCH ATTENDEES

PARKINSON’S NEW ZEALAND | PO Box 11-067, Manners St, Wellington 6142 Phone 04 801 8850 | Freephone 0800 473 4636 (0800 4PD INFO) | Fax 04 472 2162 Email info@parkinsons.org.nz | Web www.parkinsons.org.nz Follow us on Facebook www.facebook.com/parkinsonsnz & Twitter @Parkinsonsnz

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.