www.parkinsons.org.nz

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ISSN 1177-0635

After almost two years of discussions and planning, 15 legally separate entities are reforming as one cohesive and united organisation, with the needs of people living with Parkinson’s at the centre and directing everything we do.

This decision has been driven by a multitude of internal and external factors including the expectations of people with Parkinson’s and their families, changes to government legislation, a dramatic increase in the number of people predicted to be diagnosed with Parkinson’s in the next decade, accountability and outcome demands from funders, and a shrinking number of volunteers.

The new Trust will allow us to streamline “back office” functions like Finance, HR and IT. This rationalisation not only makes sense financially, but it will also allow our local groups to focus on their important frontline work.

Local committees have been reformed as Parkinson’s Action Groups. Each Parkinson’s Action Group will continue to work closely with their Parkinson’s Community Educator to ensure that the needs of their local communities are met.

Parkinson’s New Zealand Charitable Trust

On the 29 March 2018, the Parkinson’s New Zealand Charitable Trust will become the only New Zealand organisation providing education, information and support services to people living with, affected by and treating Parkinson’s and Parkinsonism conditions.

It is vital that those with a lived experience of Parkinson’s —whether they have it themselves, or care for somebody who has it — guide the organisation at all levels. This is why the new structure is far more democratic and allows all paid members to vote for members of the Parkinson’s New Zealand Trust Board.

The initial Parkinson’s New Zealand Charitable Trust Board is made up of five current Parkinson’s New Zealand Board members serving a mixture of one and two year terms. Members will vote to fill another two positions this year. Details about the nominees and how to vote can be found on page 12 of this issue of The Parkinsonian.

Over the years, Parkinson’s New Zealand has worked to improve the everyday lives of people with Parkinson’s and the impact that we have collectively made on the Parkinson’s community is recognised across New Zealand. We look forward to being able to meet future challenges through the new Parkinson’s New Zealand Charitable Trust.

Parkinson’s New Zealand Charitable Trust Board members (left) Jan Grigg, Graeme Roberts, Susie Abraham, (front) Murray Carey and Andrew Dunn.

THE PARKINSONIAN

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World Parkinson’s Day 2018

This World Parkinson’s Day join the global Parkinson’s community and #UniteForParkinsons.

But above all: please remember to share your video again – using the #UniteForParkinsons hashtag – on World Parkinson’s Day, 11 April 2018.

This campaign is not only for people with Parkinson’s. If you are a family member, carer, healthcare professional or somehow involved in the field of Parkinson’s, you can also help spread the word by using the #UniteForParkinsons hashtag and making your own videos showing your support for the campaign. But don’t forget to share your videos and use the #UniteForParkinsons hashtag on 11 April!

Have a look at www.parkinsons.org.nz for video guidelines to get some tips on how to shoot your video and watch the video teaser we put together.

In the meantime, if you want to know more, we’d love to hear from you! Please email info@parkinsons.org.nz –we are here to answer any questions you may have. And don’t forget to check out the campaign website- uniteforparkinsons.org

We look forward to #UniteForParkinsons again on 11 April 2018!

Together we can make a difference.

World Parkinson’s Day 2018 (11 April) is just around the corner. This year the #UniteForParkinsons campaign will once again bring together Parkinson’s organisations and supporters from around the globe to show the world what Parkinson’s truly is.

We want to reach the broader public and turn #UniteForParkinsons into a bigger, better and more impactful campaign. So, from now until the big day, we are asking as many people with Parkinson’s as possible to:

• Record a short video using your smartphone, camera or any device

• Keep it short and simple, and make sure your audio is clear• Tell your own story! Show us your world. People need to

hear your voice, appreciate your challenges and feel your successes. They need to know how Parkinson’s affects your life today. Tell us: what is the most important thing to you right now?

• Be honest. Be brave. Be real.• Please be aware that your video does not need to be in

English – it can be in any language.• Once your video is ready, share it – but make sure to use the

#UniteForParkinsons hashtag. Post it on Facebook, upload it on YouTube, share it on Twitter. Embed it into your personal website or blog, if you have one. Get it out there, so as many people as possible can watch it.

“This is an important time for all New Zealanders living with Parkinson’s. We’re excited about creating one united organisation, strongly aligned to achieving our vision of improving the everyday lives of people with Parkinson’s. These changes will enable us to be more responsive to our members’ individual needs, cost-effective and sustainable as we move towards the third decade of the 21st century. We’ll benefit from rationalising some services. However, different communities have their different needs and the approach we’ve adopted means that local services will reflect local realities.

“We have a talented team of volunteers and staff and we will make use of their abilities and energies as we continue to strengthen our organisation. We believe this change is absolutely necessary to create a more efficient structure to support the growing number of people with Parkinson’s and enhance our core Parkinson’s Community Educator Service. While change is challenging and there will be learning for everyone, we know what needs to be done and this is a critical step in positioning Parkinson’s New Zealand for the future.”

The Parkinsonian spoke to initial Parkinson’s New Zealand Charitable Trust Chair Murray Carey:

MARCH 2018

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In this edition of The Parkinsonian we are excited to announce that we are making a change to the legal structure of our organisation and reforming as the Parkinson’s New Zealand Charitable Trust. Our new structure means that we can continue to deliver local services that best support the growing number of people with Parkinson’s and enhance our Parkinson’s Community Educator Service. We encourage people to join your local Parkinson’s Action Group to help ensure that the needs of your local communities are met.

We have four candidates standing for election to the Board. We invite financial members of current divisions and branches to place your votes electronically for your two (2) preferred candidates by visiting our website at www.parkinsons.org.nz. If you are unable to view the electronic voting form, we have included a postal ballot on page 12 of this magazine.

As you will know, each year Parkinson’s organisations and people across the world observe 11 April as World Parkinson’s Day.

A WORD FROM THE CHIEF EXECUTIVE

Tena Koutou Katoa

Deirdre O’Sullivan

Books

I am delighted to announce that we are working again with our friends at the European Parkinson’s Association and Parkinson’s UK to bring together Parkinson’s organisations and people living with Parkinson’s around the world. All you need to do to join the campaign is record a short video and share it with the hashtag #UniteForParkinsons on 11 April to show the world what it means to live with Parkinson’s. Please share news on this campaign with your friends, family and networks, especially the tech savvy younger people you know.

Nga mihi nui

THANK YOU

Here is a new book that caught the eye of The Parkinsonian.

THE PARKINSONIAN

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There is currently no definitive diagnostic test for Parkinson’s. Instead, specialists use clinical judgment and tests that rule out other conditions. This can take time, which can cause stress for people waiting for a diagnosis, and in some cases, can lead to a misdiagnosis.

Researchers around the world are searching for a simple test, like a skin, blood or breath test, that can accurately detect Parkinson’s.

The link between caffeine and Parkinson’s has been known for some time, but up to now it was only related to the risk of developing the condition.

This is the first time researchers have suggested a new association with how caffeine is processed in the body. The researchers discovered they could use the levels of caffeine and its byproducts to correctly identify those with Parkinson’s in this study with high accuracy.

However, due to the lack of participants with other conditions in this study, there is no evidence that this test could distinguish Parkinson’s from other neurological conditions. The authors also point out it is unclear if the levels of caffeine in the blood were due to a change in metabolism, or simply because the caffeine was not absorbed in the gut.

As such, further research is needed before we know if this test holds any promise to diagnose Parkinson’s.

Source: parkinsons.org.uk | michaeljfox.org

INCREASING INTEREST IN CANNABISCannabis, also known as marijuana, is a psychoactive drug, which means that it affects brain function and causes changes in perception, mood, consciousness or behaviour. Although it is an illegal drug, there is increasing interest in potential therapeutic effects it may have for Parkinson’s.

Barely a week goes by that Parkinson’s New Zealand is not contacted by someone with Parkinson’s asking about cannabis. The debate continues on social media platforms like Facebook and Twitter. With such interest in the topic, it seems that some people with Parkinson’s are using it and some report benefits for their symptoms. But what’s the evidence behind these personal stories?

It is currently illegal to use unprocessed cannabis for pain relief or other medical use in New Zealand. Products containing cannabis are classified as controlled drugs in New Zealand and Ministerial approval is required before most products can be prescribed by a doctor. The exceptions are a mouth spray called Sativex (for people who have multiple sclerosis) and products containing a cannabis extract called cannabidiol with no psychoactive properties.

People often find it both difficult and expensive to obtain and get approval for medicines containing cannabis in New Zealand. For example, Sativex often costs people more than $1000 per month to buy.

So far there have not been any clinical trials to test the safety and effectiveness of Sativex in people with Parkinson’s.

NEWS & RESEARCH

HIGH INTENSITY EXERCISE MAY SLOW PARKINSON’SPeople with Parkinson’s benefit from many types of exercise — boxing, dance, tai chi and others. A new Phase 2 study adds to the growing body of evidence on the effects of exercise for people with Parkinson’s. The results, published in JAMA Neurology in February, demonstrate that regular exercise on a treadmill at a high intensity may slow the progression of Parkinson’s.

In drug research, Phase 1 trials establish the basic safety of a drug in small-scale experiments. Phase 2 studies look at larger groups of people to see if the intervention remains safe and also whether it has enough beneficial effect to deserve further testing.

For this study, researchers enrolled 128 people with Parkinson’s who were diagnosed in the last five years, not yet taking medication for Parkinson’s and not regularly exercising. Participants were assigned to one of three groups: control (no change in their activity level), moderate-intensity treadmill exercises (four times a week at 60 to 65 percent maximum heart rate) or high-intensity treadmill exercise (four times a week at 80 to 85 percent maximum heart rate). After six months, researchers found that the motor symptoms of the high-intensity exercisers had not progressed, while those of the control group and moderate-intensity exercisers had.

These results demonstrate the feasibility, safety and potential benefit of high intensity treadmill exercise in people with Parkinson’s, particularly those who are recently diagnosed. A Phase 3 efficacy trial would help fully determine the benefits of this activity in Parkinson’s.

Research on varied types of exercise for both motor and non-motor symptoms of Parkinson’s is ongoing. However, one distinct type of exercise isn’t universally recommended for people with Parkinson’s. Rather than focusing on any specific method of exercise, it is important to find exercise that meets the principles needed to ease a range of Parkinson’s symptoms. Find out what you enjoy and what suits your lifestyle and level of symptoms so you can keep moving.

Just getting started? Speak with your Parkinson’s Community Educator to design a programme that meets your needs.

Source: michaeljfox.org | nytimes.com

RESEARCH ON CAFFEINE TO DIAGNOSE PARKINSON’SResearchers in Japan have discovered that people with Parkinson’s may have lower levels of caffeine in their blood after drinking tea and coffee.

The results published in the online journal Neurology in January suggest that caffeine may be processed differently by those with the condition. The researchers hope this could lead to a simple diagnostic blood test.

The study looked at the blood levels of caffeine – as well as the byproducts the body turns it into—in 108 people with Parkinson’s and 31 people of the same age who did not have the condition.

The researchers found that, despite drinking about the same amount of caffeinated beverages, the levels of both caffeine and byproducts were lower in those with Parkinson’s. They also suggest that the test might work in the early stages of the condition.

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What is cannabis?

Cannabis comes from the Cannabis sativa plant. It contains at least 85 complex chemicals called cannabinoids and two in particular are thought to be largely responsible for its effects:

• Tetrahydrocannabinol (THC) is the major psychoactive ingredient, acting primarily upon the central nervous system where it affects brain function

• Cannabidiol (CBD) has mainly non-psychoactive properties and reduces the psychoactive effects of THC.

Our brain cells produce their own brand of these molecules called endocannabinoids which are thought to be involved in regulating a whole range of brain functions including memory, pleasure, concentration, thinking, movement and co-ordination, appetite and pain.

There is no doubt that cannabinoids are interesting biological molecules and play a variety of important roles in our bodies. As a result, there is a huge amount of research underway to understand more about this complex family of chemicals and their potential across a range of conditions.

To date there have only been a handful of small studies of cannabis-based treatments in people with Parkinson’s reported in the scientific literature. Larger and more comprehensive studies are needed. There is a Phase 2 clinical trial currently underway at the University of Colorado (United States) looking at the effect of cannabidiol on tremor in 50 people with Parkinson’s.

Source: medium.com/parkinsons-uk | parkinsons.org

NTCELL CLINICAL TRIAL UPDATEIn November Auckland biotech firm Living Cell Technologies said that it won’t be seeking immediate provisional consent for its NTCELL treatment for Parkinson’s. The latest trial did not show a “statistically significant difference” between people that received the NTCELL treatment and a control group.

NTCELL is a capsule that contains clusters of neonatal porcine choroid plexus cells sourced from a unique herd of designated pathogen-free pigs. The NTCELL therapy had shown potential in early trials as a treatment for Parkinson’s. The latest study was

designed to confirm the most effective dose of NTCELL, define any placebo component of the response and further identify the initial target Parkinson’s participant subgroup. The biotech firm’s Phase 2b trial was completed in April 2017 and it had been waiting for the results to be unblinded.

There were three groups of six participants and two participants from each group had sham surgery with no NTCELL implanted to act as a control. The remaining participants received different numbers of microcapsules of NTCELL on each side of the brain.

There were no safety issues and the implantation was well tolerated in all of the participants, but the efficacy primary endpoint of the trial was not met. The participants treated with NTCELL did not experience sustained improvements in clinical features of Parkinson’s at week 26 post-implant.

Principal investigator Barry Snow at Auckland City Hospital said the next step is to analyse the data in depth and continue to monitor participants in accord with study extension protocol, particularly for improvements in the clinical features of Parkinson’s after longer time periods.

Source: lctglobal.com

PFIZER PULLS NEUROSCIENCE PROJECTSInternational pharmaceutical company, Pfizer, has announced a move to end all early-stage projects in neuroscience. The decision, announced in December, halts further research into neurological conditions, such as Parkinson’s and Alzheimer’s, from one of the world’s largest pharmaceutical companies.

While we are disappointed by Pfizer’s announcement, we know that there are many other pharmaceutical companies ready to devote time, effort and funding towards the development of better treatments for Parkinson’s.

In the UK, nine pharmaceutical companies are members of the Critical Path for Parkinson’s, working to improve clinical trials and help smooth the path for all future drugs by making clinical trials smarter and faster.

Source: parkinsons.uk.org | nwpf.org

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THE PARKINSONIAN

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Caring and working

CARERS CORNER

If you’re caring for someone with Parkinson’s and also working, life can be demanding. Knowing when and how to ask for help and being aware of your rights at work often helps.

THE BENEFITS OF WORKOn the positive side, paid work provides many advantages. You maintain your financial independence and earn money to support the caring. Work provides a break from caring, as well as social networks and friendships.

Research under the auspices of no less than the OECD, for example, cites the benefits of carers working at least part time.

However, combining caring and work has its challenges.

WORK ISSUESUnder New Zealand law, you do not have to tell your employer about your care responsibilities. However, you may want to tell your employer, and sooner rather than later if these responsibilities affect or are likely to affect your job in any way, such as your ability to work longer hours when asked.

Telling your employer also gives them the opportunity to consider how they can support you with your additional responsibilities. This may include flexible arrangements if the employer has room to move. Good employers want happy, well rested employees and to treat people well.

You may want to discuss flexibility around work start times or finish times. And also consider reduced hours, or working at home for some of your week.

Employers are legally required to consider any request for more flexible working arrangements and must provide you with an answer within a month. They can decline your request for several reasons regarding their ability to accommodate your requests. The reason for declining the request must be specific. Fortunately, there is no longer a limit on how many requests for flexible working hours you can make during a year—the rules have changed.

It’s important to make sure you have an idea of what sort of work options would suit you now and into the future, and your rights in the workplace before talking with your employer. (If you’re unsure it may be worth giving your union a call or visiting the Ministry of Business, Innovation and Employment (MBIE) Employment Service website at www.employment.govt.nz.)

Examples of possible concessions and support by employers include:• access to a telephone to check on the person you care for

(breaks to call home)• flexible working • leave arrangements (paid or unpaid)• an employee assistance programme.

You can get free employment information by phoning the Ministry of Business, Innovation and Employment (MBIE) on 0800 20 90 20. For information targeted at carers who also work Carers New Zealand provides some at carers.net.nz under Work and Care: Information for Carers

SICK LEAVEAfter six months of continuous employment, all New Zealand employees are entitled to five days’ sick leave with pay and thereafter five days’ sick leave for every 12 months of work. Sick leave can be taken for several reasons including if a person who depends on the employee for care is sick or injured. Find out more at www.employment.govt.nz.

IF WORKING ISNT WORKINGWith support from your employer there’s every chance you will be able to balance your caring and work roles. But don’t beat yourself up if you find it hard.

You’ll need to consider your options if juggling work and care is too hard. Maybe job sharing or working part-time would work better for you? Or you might want to consider working as a freelancer or contractor, or picking up casual ‘temp’ work where you can turn down assignments if they don’t fit with your caring responsibilities.

FINANCIAL SUPPORT A Living Support Payment is available to full time carers, excluding carers that work, but it’s advisable to contact Work and Income or talk with your GP about any other subsidies that may apply to the person you care for or yourself. www.workandincome.govt.nz or 0800 559 009.

GETTING THE REST AND SUPPORT YOU NEEDEveryone’s different, but whether you work or not, at some point it’s not unlikely you will need to find some practical help with caring. Finding the right help is essential.

Options include: • asking family and friends to help on a paid or unpaid basis • employing someone directly • using assisted living technologies that can help monitor/improve

the well-being of the person you care for while you are at work.

MORE (GENERAL) INFORMATIONEveryone caring for someone with Parkinson’s needs the right support and knowledge. There are good resources at:

www.carers.net.nz (including the Guide for Carers)www.employment.govt.nzwww.carersaustralia.com.auwww.parkinsons.org.nzwww.parkinsons.org.uk

SOURCES:www.carers.net.nz | www.employment.govt.nzwww.carersaustralia.com.au | www.mbie.govt.nzwww.oecd.org | www.parkinsons.org.nzwww.parkinsons.org.uk

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FACT SHEET

Wearing off and involuntary movements (dyskinesia)

WHAT ARE THE MOVEMENT PROBLEMS SOMETIMES ASSOCIATED WITH LONG TERM LEVODOPA USE?If you go from having good control of your symptoms to having less control, you may be experiencing motor fluctuations.

Motor fluctuations may come on slowly or quickly. They typically happen when levodopa is wearing off, but they may occur at other times too. If the fluctuation is caused by your levodopa based medication wearing off this is called “end of dose wearing off’ or just “wearing off”.

In the early stages of Parkinson's, you may not notice when a dose of levodopa begins to wear off. But as Parkinson's progresses, you may find that it doesn't last as long as it used to. These fluctuations can become more unpredictable in the later stages of Parkinson's when people have been taking Parkinson’s medications for several years.

A lot of people with Parkinson’s experience motor fluctuations or involuntary movements after five to 10 years of levodopa treatment. Some people may develop them earlier, especially if they are on a high dose of levodopa. People who develop Parkinson’s before the age of 40 are also at a high risk of developing motor fluctuations and involuntary movements.

“ON” AND “OFF” VERSUS “FREEZING”Being “on” is when your symptoms are controlled and when you feel you can do the most. Being “off’ is when Parkinson's symptoms come back and affect you the most.

Being “on or “off” is different from freezing. There are different ways of managing the swings due to freezing and “on/off” swings. During “off” periods you are hardly able to move at all, so walking,

If you have been taking a Parkinson’s medication that contains levodopa for some time, for example Sinemet, you may develop some side effects that can affect your movement. This factsheet describes the different movement problems that can happen after using levodopa for several years. It explains what might cause them and how they can be controlled.

especially up stairs or reaching for a cup will be impossible. But when you freeze, it affects certain movements and not others. You may not be able to walk, for example, but you’re still able to reach for a cup.

For more information, see our Parkinson’s and Freezing factsheet.

MOOD AND EMOTIONSIn addition to motor (movement) symptoms related to wearing off you may also experience feelings of anxiety, sleepiness, low mood or pain as your medication wears off. You are advised to talk to your Parkinson’s Community Educator or family doctor regarding any such issues.

DYSKINESIA (INVOLUNTARY MOVEMENTS)Dyskinesia is uncontrollable muscle movements. They include jerks, twitches, twisting or writhing movements, or restlessness. Involuntary movements can affect various parts of the body such as your arms, legs and the upper half of your body. The side of your body most affected by Parkinson’s is where they often start and they usually occur in the legs before the arms.

There are different types of involuntary movements, and when and how often they appear differs from person to person. Some people experience involuntary movements for most of the day, while others may have them just prior to their next dose of medication.

“Peak dose”, when levodopa is at its highest level in the bloodstream and in your brain, is another time when you are more likely to experience this side effect.

Because dyskinesia causes people to move around so much it can cause substantial weight loss. If you are worried about this, speak to your family doctor or Parkinson’s Community Educator.

THE PARKINSONIANTHE PARKINSONIAN

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FACT SHEET – CONTINUED FROM PREVIOUS PAGE

Sources: Parkinson’s UK

HOW CAN I MANAGE MOTOR FLUCTUATIONS AND INVOLUNTARY MOVEMENTS?

MEDICATIONTreating motor fluctuations and involuntary movements can be complex. Reducing your dose of levodopa to reduce involuntary movements, means your Parkinson’s symptoms may be less controlled and you may have more wearing off or “on/off”.

You will need to discuss any problems you have with your Community Educator, family doctor or specialist. If your symptoms suddenly become worse, make sure to speak to them as soon as possible. Your health professional can advise you on what changes you can make to your medication regimen to balance treating motor problems and keeping your other Parkinson’s symptoms under control.

Options include avoiding peaks and troughs in doses of levodopa. The strategy might be taking smaller and more frequent doses of levodopa but keeping the overall amount the same.

You may also be advised to change to a different type of levodopa that helps even out levels in your bloodstream. You could also take it in another format, for example by intestinal gel. Additionally, there are other Parkinson’s medications such as amantadine that can help levodopa to work better. Unfortunately, amantadine can have serious side effects of its own and does not work for all who experience dyskinesia.

If you take dopamine agonists from early on after your diagnosis of Parkinson’s, for example lisuride or ropinirole, there is some evidence to suggest that you may be less prone to motor fluctuations. However this may mean your symptoms are less well controlled and dopamine agonists can cause dyskinesia as well.

DIETFor some people eating protein (such as in fish, meat, eggs, cheese and beans) can cause problems by reducing or slowing down the amount of levodopa that is absorbed into the bloodstream. Protein is essential for your health, so it’s vital you retain it as part of your diet. However, you may find it helpful to take your medication at least 30 minutes before you eat to allow the medication time to start working. Talk to your Parkinson’s Community Educator, family doctor or specialist about when to take your medication.

SURGERYSurgery may be the best option for people who do not respond well to medication. It may also be used for people who are experiencing particularly troublesome involuntary movements.

A type of surgery called deep brain stimulation can help increase the amount of time you are in the “on” state. This can mean that you’re able to reduce your Parkinson’s medication and help reduce side effects such as involuntary movements.

Like any surgery, there are potential risks to having deep brain stimulation. Talk to your Parkinson’s Community Educator or specialist to find out more.

For more information see our Deep Brain Stimulation factsheet.

MANAGE YOUR STRESSStress may contribute to motor fluctuations and involuntary movements, therefore finding ways to stay relaxed is highly recommended. You could try complementary therapies such as massage or exercises such as Tai Chi or yoga.

For more information see our Parkinson’s and Complementary Therapies factsheet.

If you are frequently highly stressed or anxious, it’s recommended you ask your Parkinson’s Community Educator or family doctor for advice on managing these conditions.

You may find dealing with people’s reactions to your involuntary movements annoying, stressful or embarrassing. It may be worth explaining to those around you that the symptoms are part of your condition and they shouldn’t be alarmed or concerned if they happen.

MAKE THE MOST OF “ON” TIMEIf you start to experience your medication wearing-off, it is important that your medication regimen is managed so you get the most of your “on” time.

This becomes more complicated if you also begin to have involuntary movements. You might then have to decide on a compromise between more “on” time with involuntary movements, or more “off” time with other Parkinson’s symptoms. Many people tend to prefer more “on” time, even with involuntary movements, but everyone is different and you should discuss your options with your Parkinson’s Community Educator, family doctor or specialist.

KEEP A DIARYTo make the most of your “on” time with the least possible involuntary movements, it can be helpful for you or the people who care about you to keep a 24-hour diary.

This will show when your symptoms and fluctuations happen, and for how long. Record this along with the times you take your medications, and the medication dosages.

Some women with Parkinson’s find their motor symptoms fluctuate in line with their menstrual cycle. This link has not been proven, but keeping a diary will help you see whether your monthly cycle is having an effect on your movement symptoms.

Recording your progress, issues you encounter and similar can help you and your healthcare professional understand how your medication affects you, and how often you’re experiencing difficulties. It can also give a better idea of what strategies to use to smooth out fluctuations.

For more information see our Preparing for a Medical Appointment and Keeping a Diary: for carers factsheets.

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DECEMBER 2017

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GET GOING

The Tinman ClubThroughout the year thousands of New Zealanders of all ages push themselves to meet the challenge of events like the Classic Builders Tinman Triathlon in Tauranga. Some enter as individuals and others enter as teams.

A distinctive group of athletes from Waikato took up the challenge of the Classic Builders Tinman Triathlon in Tauranga and they made quite an impact in their Parkinson’s New Zealand red t-shirts. This iconic sporting event was held at Mount Maunganui on 19 November.

Parkinson’s Waikato UPBEAT member Martin Bennett, supported by his daughter Stephanie, trained to compete in the triathlon. Martin was joined by Waikato UPBEAT members. The unity, enthusiasm, resilience and sheer grit that Martin and Stephanie showed led to a group of over 60 athletes deciding to Get Going for Parkinson’s. Many of them had never taken part in a triathlon.

The group named themselves the Tinman Club and they created a Facebook group to share news and help motivate each other during the lead-up to the challenge. Their efforts have raised over $15,000.

Martin is keen to let people know that exercise has helped him greatly on a number of fronts and that perseverance is key. Here Martin shares his thoughts about “getting going” for Parkinson’s.

“The idea was to raise awareness of the importance for people with Parkinson’s to be active and push back against this challenging condition and to support Parkinson’s Waikato and Parkinson’s New Zealand. The great thing about this project is that you also benefit from this at a personal level as you are leaner, fitter, motivated, unstoppable and have bragging rights that you have successfully completed a triathlon.

“In recent times, there has been a real shift in the thinking about the way we respond to the challenge of living with Parkinson’s. Regular medication mostly deals with the symptoms while Parkinson’s deals to you. The opportunity exists for many people in the early stages of Parkinson’s to push back against this condition that is with you for the rest of your life.

“I am personally making significant progress and believe if you are prepared to work hard, really hard, at maintaining your balance, coordination, flexibility, strength, general motor skills and a positive outlook on life, you also make significant gains in your quality of life by getting involved in programmes such as PD Warrior, boxfit training, specialised physio plans and maybe triathlons. This approach is making a big difference to many people who are picking up the challenge and we hope to help and encourage people with Parkinson’s to give it a good GO!”

The Tinman Triathlon was a great experience to help build confidence and make exercise part of our daily routines. Everyone is still welcome to join the Tinman Club Facebook group to view more posts, photos and videos.

For more information about how you can Get Going for Parkinson’s please call 0800 473 4636 or email getgoing@parkinsons.org.nz

THE PARKINSONIAN

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THE PARKINSONIAN

In the September edition of The Parkinsonian we published a cover story about a landmark decision by Veterans’ Affairs New Zealand. Veterans’ Affairs provided one of our members with an entitlement to disability compensation for his Parkinson’s, a condition that is attributed to his operational service on a Royal New Zealand Navy Ship during the Malayan Emergency.

Veterans Affairs’ New Zealand has recognised that Parkinson’s is linked to a toxic solvent used within the Navy, both on ships and on shore, and will now be paying disability compensation. The Royal New Zealand Navy used a number of chemical solvents on ships beginning in at least the 1950s. Among the chemical solvents was trichloroethylene (TCE), which is thought to be among the most damaging to human health, with links to a number of adverse health effects including Parkinson’s.

After we went to print with this story, you got involved. Your phone calls, emails and engagement on social media led to a front page story in the New Zealand Herald and a further investigation into the use of this chemical solvents in other New Zealand workplaces. There was additional media coverage about this issue overseas.

Parkinson’s New Zealand is working to achieve the best outcomes for people living with Parkinson’s. We continue to partner with the Royal New Zealand Returned Services’ Association (RSA) and we are in discussions with ACC about any claims specifically for TCE exposure in the workplace causing Parkinson's.

If you or someone you know has been exposed to TCE, please talk to your doctor or your Parkinson’s Community Educator.

NZ Navy veteran’s compensation battle update

Parkinson’s New Zealand recently met with PHARMAC to discuss Parkinson’s medications including levodopa. Nearly 50 years after its discovery, levodopa remains the cornerstone of Parkinson’s therapy, and a large majority of people with Parkinson’s take levodopa medication.

PHARMAC has advised Parkinson’s New Zealand that they may make a change to their funding policy for levodopa.

If you are one of the approximately 950 people with Parkinson’s in New Zealand who have been prescribed the Kinson brand of levodopa with carbidopa tablet, 100mg with carbidopa 25mg, from 1 February 2018, your doctor may prescribe the brand Sinemet. This may look different, but the active ingredients in the medication are the same, and there is no cause for concern.

From 1 February, the price for Kinson tablets of $20.00 is reference priced to the new subsidised price of $17.97 for Sinemet tablets.

This means that if you want to continue taking Kinson tablets, you will have to pay the difference of $2.03 at the pharmacy for your script (ie, the difference between the subsidised and non-subsidised brands of the medication).

From 1 May 2018, Kinson will no longer be funded. This means that Sinemet will be the only funded brand of levodopa with carbidopa tablet 100mg with carbidopa 25mg. You should talk to your doctor if this presentation of Sinemet is not working for you.

All other doses of levodopa with carbidopa are unchanged, with Sinemet being the only funded brand.

For more information about levodopa medication, please refer to our Medication Used in the Treatment of Parkinson’s booklet.

PHARMAC to change levodopa funding

HMNZS TARANAKI AT PEARL HARBOR C. 1963

MARCH 2018

11

Here are just some of the events taking place around the country.

NEWS FROM AROUND THE COUNTRY

AUCKLANDAs we go to print Parkinson’s Auckland is hosting a Golf Day Tournament at the Wainui Golf Course on Monday 19 March. Teams of players will tee off at 1pm with a shotgun start. The day will finish with a meal, auction and prizegiving. Many thanks to volunteer Ann Cambie for organising this fabulous event. We also wish to acknowledge the support of our generous sponsors Summerset Retirement Villages and Wainui Golf Course.

In addition Parkinson’s Auckland will host a World Parkinson’s Day seminar on Wednesday 11 April at the Greenlane Christian Centre, 17 Marewa Road, Greenlane. Join us for tea and coffee and biscuits before we enjoy our guest speaker Associate Professor Dr Maurice Curtis at 1pm. Gold coin donation requested to help cover costs.

CENTRAL PLATEAUIn November Parkinson’s Central Plateau was selected as one of the eight recipients of the Rotary Charitable Luncheon Trust annual “fundraiser”. Parkinson’s Central Plateau was absolutely delighted and grateful to receive $9,000 as their share of the proceeds from the day.

HAWKE’S BAYThe second Parkinson's Hawke's Bay Cape Sanctuary Charity Walk was held on Saturday 3 March. Attendees enjoyed a fantastic walk through the private reserve. They took in the beautiful scenery and had a rare view inside the predator fences of a safe house for takahe, tuatara, kiwi, seabirds and kakariki. The walk was followed by a paella lunch.

CAPE SANCTUARY WALK, HAWKE’S BAYCHRIS BROWN, NATIONAL OFFICE TEAM MEMBERS JOHN HENTON AND JULIANNE RYAN, AND CHRIS L’ANSON

WELLINGTONIn February visitors from the UK Chris l'Anson and Chris Brown stopped by Parkinson's New Zealand National Office for a chat and a cuppa on their way to the Wellington Ferry Terminal. Chris and Chris were cycling from Cape Reinga to Bluff, to raise funds for our friends at Parkinson's UK and Claro Mental Health. Over 19 days, this amazing team covered over 2,000km and 60,000 feet of ascent, cycled through a cyclone and raised over NZ$11,400.

MARLBOROUGH

Parkinson’s Marlborough will host a Satellite Neurophysiotherapy Clinic with an evening talk on 4 May on the topic of “Neuroplasticity”. Online bookings for individual assessment with neurophysiotherpist Gilly Davy are available. Contact Community Educator Janine Ready for more information on 0272551299.

OTAGOOn 10 March Dr Louise Parr-Brownlie gave a talk for Brain Day 2018 at the Otago Museum. Louise discussed research in the Parkinson's brain and how this knowledge is being applied to develop and test a potential new treatment. Parkinson's Otago Community Educator Paula Ryan had a stall at the event. Visit brainweek.co.nz for more info about other Brain Day events on 17 March in Christchurch and 21 July in Auckland.

PARKINSON’S NEW ZEALAND | PO Box 11-067, Manners St, Wellington 6142 Phone 04 801 8850 | Freephone 0800 473 4636 (0800 4PD INFO) 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.

THE PARKINSONIAN

12

Robyn Cotton

POSTAL BALLOT

Have your say The governance Board of The Parkinson’s New Zealand Charitable Trust will be made up of skilled trustees responsible for setting the strategic direction of the organisation and ensuring that strategy is successfully implemented.

This year financial members of current divisions and branches are invited to vote. When possible we prefer members vote electronically to save costs, however, if you are unable to access the online voting form, you can use the postal ballot form

Parkinson’s New Zealand Charitable Trust Board TrusteesPlease clearly mark ( X ) to vote. Vote for no more than two (2) candidates:

Short biographies for each of the candidates are below:

JUDY CLARKE Judy Clarke has been a member of the Parkinson’s New Zealand Board for the past three years. She previously worked as a self-employed podiatrist who owned her own practice and she worked within the diabetes centre at Hawke’s Bay DHB. Judy serves on the committee of Parkinson's Hawke's Bay. She was diagnosed with Parkinson’s in 2007.

ROBYN COTTONRobyn Cotton is a business consultant, and she brings 10 years of strategic and governance experience on the Board of International Needs New Zealand, a charitable trust. She has been a member of New Zealand Institute of Directors from 2012 to 2017. She was diagnosed with Parkinson’s in 2017.

Candidates for the Board of TrusteesHUGH KIRBY TAYLOR Hugh Kirby Taylor has been a member of the Parkinson’s New Zealand Board for the past five years. Kirby recently retired as an Authorised Financial Adviser working for the DecisionMakers group of advisers.

CHRISTINE MERCERChristine Mercer is a registered nurse. For her PhD in Nursing, she explored the experiences of partners being hospitalised in non-local tertiary environments. She has been the Chair of Parkinson’s Bay of Plenty since March 2017 and has cared for her husband with Parkinson’s for 20 years.

Visit www.parkinsons.org.nz to view more information about each of our candidates and access the electronic voting form.

If you have questions or need more information please contact us at info@parkinsons.org.nz

provided below and post it by Monday, 23 April 2018 to:

Parkinson’s New Zealand Po Box 11067 Manners Street Wellington 6142

Financial members will have one vote for each open position. There are two (2) open positions, so each paid member will have two (2) votes, for two (2) people.

Christine MercerHugh Kirby TaylorJudy Clarke

POSTAL BALLOT for the Election of Trustees of the Parkinson’s New Zealand Charitable Trust Board

I NAME

of ADDRESS

TELEPHONE EMAIL

Confirm that I am a member of

DIVISION / BRANCH

SIGNATURE: DATE: