Parkinson's New Zealand Charitable Trust
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ISSN 1177-0635
1
Parkinson’s New Zealand Charitable Trust Board members (left) Jan Grigg, Graeme
Roberts, Susie Abraham, (front) Murray Carey and Andrew Dunn.
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.
After almost two years of discussions and planning, 15 legally It is vital that those with a lived experience of Parkinson’s —
separate entities are reforming as one cohesive and united whether they have it themselves, or care for somebody who
organisation, with the needs of people living with Parkinson’s at has it — guide the organisation at all levels. This is why the new
the centre and directing everything we do. structure is far more democratic and allows all paid members
to vote for members of the Parkinson’s New Zealand Trust Board.
This decision has been driven by a multitude of internal and
external factors including the expectations of people with The initial Parkinson’s New Zealand Charitable Trust Board
Parkinson’s and their families, changes to government legislation, is made up of five current Parkinson’s New Zealand Board
a dramatic increase in the number of people predicted to be members serving a mixture of one and two year terms. Members
diagnosed with Parkinson’s in the next decade, accountability will vote to fill another two positions this year. Details about the
and outcome demands from funders, and a shrinking number nominees and how to vote can be found on page 12 of this issue
of volunteers. of The Parkinsonian.
The new Trust will allow us to streamline “back office” functions Over the years, Parkinson’s New Zealand has worked to improve
like Finance, HR and IT. This rationalisation not only makes sense the everyday lives of people with Parkinson’s and the impact
financially, but it will also allow our local groups to focus on that we have collectively made on the Parkinson’s community is
their important frontline work. recognised across New Zealand. We look forward to being able
to meet future challenges through the new Parkinson’s New
Local committees have been reformed as Parkinson’s Action
Zealand Charitable Trust.
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.
www.parkinsons.org.nz
World Parkinson’s
Day 2018
This World Parkinson’s Day join the global Parkinson’s
community and #UniteForParkinsons.
World Parkinson’s Day 2018 (11 April) is just around the corner. But above all: please remember to share your video again –
This year the #UniteForParkinsons campaign will once again using the #UniteForParkinsons hashtag – on World Parkinson’s
bring together Parkinson’s organisations and supporters from Day, 11 April 2018.
around the globe to show the world what Parkinson’s truly is.
This campaign is not only for people with Parkinson’s. If
We want to reach the broader public and turn you are a family member, carer, healthcare professional or
#UniteForParkinsons into a bigger, better and more impactful somehow involved in the field of Parkinson’s, you can also help
campaign. So, from now until the big day, we are asking as many spread the word by using the #UniteForParkinsons hashtag
people with Parkinson’s as possible to: and making your own videos showing your support for the
campaign. But don’t forget to share your videos and use the
• Record a short video using your smartphone, camera or
#UniteForParkinsons hashtag on 11 April!
any device
• Keep it short and simple, and make sure your audio is clear Have a look at www.parkinsons.org.nz for video guidelines to
• Tell your own story! Show us your world. People need to get some tips on how to shoot your video and watch the video
hear your voice, appreciate your challenges and feel your teaser we put together.
successes. They need to know how Parkinson’s affects your
In the meantime, if you want to know more, we’d love to hear
life today. Tell us: what is the most important thing to you
from you! Please email info@parkinsons.org.nz –we are here to
right now?
answer any questions you may have. And don’t forget to check
• Be honest. Be brave. Be real.
out the campaign website- uniteforparkinsons.org
• Please be aware that your video does not need to be in
2 English – it can be in any language. We look forward to #UniteForParkinsons again on 11 April 2018!
• Once your video is ready, share it – but make sure to use the
Together we can make a difference.
#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.
The Parkinsonian spoke to initial Parkinson’s New Zealand
Charitable Trust Chair Murray Carey:
“This is an important time for all New Zealanders “We have a talented team of volunteers and staff
living with Parkinson’s. We’re excited about and we will make use of their abilities and energies
creating one united organisation, strongly aligned as we continue to strengthen our organisation.
to achieving our vision of improving the everyday We believe this change is absolutely necessary to
lives of people with Parkinson’s. These changes will create a more efficient structure to support the
enable us to be more responsive to our members’ growing number of people with Parkinson’s and
individual needs, cost-effective and sustainable enhance our core Parkinson’s Community Educator
as we move towards the third decade of the 21st Service. While change is challenging and there will
century. We’ll benefit from rationalising some be learning for everyone, we know what needs to
services. However, different communities have their be done and this is a critical step in positioning
different needs and the approach we’ve adopted Parkinson’s New Zealand for the future.”
means that local services will reflect local realities.
THE PARKINSONIAN
A WORD FROM THE CHIEF EXECUTIVE
Tena Koutou Katoa
In this edition of The Parkinsonian we are excited to announce I am delighted to announce that we are working again with our
that we are making a change to the legal structure of our friends at the European Parkinson’s Association and Parkinson’s
organisation and reforming as the Parkinson’s New Zealand UK to bring together Parkinson’s organisations and people
Charitable Trust. Our new structure means that we can continue living with Parkinson’s around the world. All you need to do to
to deliver local services that best support the growing number of join the campaign is record a short video and share it with the
people with Parkinson’s and enhance our Parkinson’s Community hashtag #UniteForParkinsons on 11 April to show the world
Educator Service. We encourage people to join your local what it means to live with Parkinson’s. Please share news on this
Parkinson’s Action Group to help ensure that the needs of your campaign with your friends, family and networks, especially the
local communities are met. tech savvy younger people you know.
We have four candidates standing for election to the Board. Nga mihi nui
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.
Deirdre O’Sullivan
As you will know, each year Parkinson’s organisations and people
across the world observe 11 April as World Parkinson’s Day.
Books
3
Here is a new book that caught the eye
of The Parkinsonian.
THANK YOU
MARCH 2018
NEWS & RESEARCH
HIGH INTENSITY EXERCISE MAY There is currently no definitive diagnostic test for Parkinson’s.
SLOW PARKINSON’S Instead, specialists use clinical judgment and tests that rule out
other conditions. This can take time, which can cause stress for
People with Parkinson’s benefit from many types of exercise —
people waiting for a diagnosis, and in some cases, can lead to a
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 misdiagnosis.
with Parkinson’s. The results, published in JAMA Neurology in Researchers around the world are searching for a simple test,
February, demonstrate that regular exercise on a treadmill at a like a skin, blood or breath test, that can accurately detect
high intensity may slow the progression of Parkinson’s. Parkinson’s.
In drug research, Phase 1 trials establish the basic safety of a drug The link between caffeine and Parkinson’s has been known
in small-scale experiments. Phase 2 studies look at larger groups for some time, but up to now it was only related to the risk of
of people to see if the intervention remains safe and also whether developing the condition.
it has enough beneficial effect to deserve further testing.
This is the first time researchers have suggested a new
For this study, researchers enrolled 128 people with Parkinson’s association with how caffeine is processed in the body. The
who were diagnosed in the last five years, not yet taking researchers discovered they could use the levels of caffeine and
medication for Parkinson’s and not regularly exercising. its byproducts to correctly identify those with Parkinson’s in this
Participants were assigned to one of three groups: control (no study with high accuracy.
change in their activity level), moderate-intensity treadmill
exercises (four times a week at 60 to 65 percent maximum heart However, due to the lack of participants with other conditions in
rate) or high-intensity treadmill exercise (four times a week at 80 this study, there is no evidence that this test could distinguish
to 85 percent maximum heart rate). After six months, researchers Parkinson’s from other neurological conditions. The authors also
found that the motor symptoms of the high-intensity exercisers point out it is unclear if the levels of caffeine in the blood were
had not progressed, while those of the control group and due to a change in metabolism, or simply because the caffeine
moderate-intensity exercisers had. was not absorbed in the gut.
These results demonstrate the feasibility, safety and potential As such, further research is needed before we know if this test
benefit of high intensity treadmill exercise in people with holds any promise to diagnose Parkinson’s.
Parkinson’s, particularly those who are recently diagnosed. A
Source: parkinsons.org.uk | michaeljfox.org
Phase 3 efficacy trial would help fully determine the benefits of
this activity in Parkinson’s.
4 INCREASING INTEREST IN CANNABIS
Research on varied types of exercise for both motor and non-
motor symptoms of Parkinson’s is ongoing. However, one distinct Cannabis, also known as marijuana, is a psychoactive drug,
type of exercise isn’t universally recommended for people with which means that it affects brain function and causes changes
Parkinson’s. Rather than focusing on any specific method of in perception, mood, consciousness or behaviour. Although
exercise, it is important to find exercise that meets the principles it is an illegal drug, there is increasing interest in potential
needed to ease a range of Parkinson’s symptoms. Find out what therapeutic effects it may have for Parkinson’s.
you enjoy and what suits your lifestyle and level of symptoms so Barely a week goes by that Parkinson’s New Zealand is not
you can keep moving. contacted by someone with Parkinson’s asking about cannabis.
Just getting started? Speak with your Parkinson’s Community The debate continues on social media platforms like Facebook and
Educator to design a programme that meets your needs. Twitter. With such interest in the topic, it seems that some people
with Parkinson’s are using it and some report benefits for their
Source: michaeljfox.org | nytimes.com symptoms. But what’s the evidence behind these personal stories?
It is currently illegal to use unprocessed cannabis for pain relief
RESEARCH ON CAFFEINE TO or other medical use in New Zealand. Products containing
DIAGNOSE PARKINSON’S cannabis are classified as controlled drugs in New Zealand and
Researchers in Japan have discovered that people with Ministerial approval is required before most products can be
Parkinson’s may have lower levels of caffeine in their blood after prescribed by a doctor. The exceptions are a mouth spray called
drinking tea and coffee. Sativex (for people who have multiple sclerosis) and products
The results published in the online journal Neurology in January containing a cannabis extract called cannabidiol with no
suggest that caffeine may be processed differently by those with psychoactive properties.
the condition. The researchers hope this could lead to a simple People often find it both difficult and expensive to obtain and
diagnostic blood test. get approval for medicines containing cannabis in New Zealand.
The study looked at the blood levels of caffeine – as well as the For example, Sativex often costs people more than $1000 per
byproducts the body turns it into—in 108 people with Parkinson’s month to buy.
and 31 people of the same age who did not have the condition. So far there have not been any clinical trials to test the safety
The researchers found that, despite drinking about the same and effectiveness of Sativex in people with Parkinson’s.
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.
THE PARKINSONIAN
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What is cannabis? designed to confirm the most effective dose of NTCELL, define
any placebo component of the response and further identify
Cannabis comes from the Cannabis sativa plant. It contains the initial target Parkinson’s participant subgroup. The biotech
at least 85 complex chemicals called cannabinoids and two in firm’s Phase 2b trial was completed in April 2017 and it had been
particular are thought to be largely responsible for its effects: waiting for the results to be unblinded.
• Tetrahydrocannabinol (THC) is the major psychoactive There were three groups of six participants and two participants
ingredient, acting primarily upon the central nervous system from each group had sham surgery with no NTCELL implanted
where it affects brain function to act as a control. The remaining participants received different
• Cannabidiol (CBD) has mainly non-psychoactive properties numbers of microcapsules of NTCELL on each side of the brain.
and reduces the psychoactive effects of THC. There were no safety issues and the implantation was well
Our brain cells produce their own brand of these molecules tolerated in all of the participants, but the efficacy primary
called endocannabinoids which are thought to be involved in endpoint of the trial was not met. The participants treated with
NTCELL did not experience sustained improvements in clinical 5
regulating a whole range of brain functions including memory,
pleasure, concentration, thinking, movement and co-ordination, features of Parkinson’s at week 26 post-implant.
appetite and pain. Principal investigator Barry Snow at Auckland City Hospital said
There is no doubt that cannabinoids are interesting biological the next step is to analyse the data in depth and continue to
monitor participants in accord with study extension protocol,
molecules and play a variety of important roles in our bodies.
particularly for improvements in the clinical features of
As a result, there is a huge amount of research underway to
Parkinson’s after longer time periods.
understand more about this complex family of chemicals and
their potential across a range of conditions. Source: lctglobal.com
To date there have only been a handful of small studies of
cannabis-based treatments in people with Parkinson’s reported in PFIZER PULLS NEUROSCIENCE PROJECTS
the scientific literature. Larger and more comprehensive studies International pharmaceutical company, Pfizer, has announced
are needed. There is a Phase 2 clinical trial currently underway at a move to end all early-stage projects in neuroscience. The
the University of Colorado (United States) looking at the effect of decision, announced in December, halts further research into
cannabidiol on tremor in 50 people with Parkinson’s. neurological conditions, such as Parkinson’s and Alzheimer’s,
from one of the world’s largest pharmaceutical companies.
Source: medium.com/parkinsons-uk | parkinsons.org
While we are disappointed by Pfizer’s announcement, we know
NTCELL CLINICAL TRIAL UPDATE that there are many other pharmaceutical companies ready to
devote time, effort and funding towards the development of
In November Auckland biotech firm Living Cell Technologies said better treatments for Parkinson’s.
that it won’t be seeking immediate provisional consent for its
NTCELL treatment for Parkinson’s. The latest trial did not show a In the UK, nine pharmaceutical companies are members of the
“statistically significant difference” between people that received Critical Path for Parkinson’s, working to improve clinical trials
the NTCELL treatment and a control group. and help smooth the path for all future drugs by making clinical
trials smarter and faster.
NTCELL is a capsule that contains clusters of neonatal porcine
choroid plexus cells sourced from a unique herd of designated Source: parkinsons.uk.org | nwpf.org
pathogen-free pigs. The NTCELL therapy had shown potential in
early trials as a treatment for Parkinson’s. The latest study was
MARCH 2018CARERS CORNER
Caring and working
If you’re caring for someone with Parkinson’s and also
SICK LEAVE
working, life can be demanding. Knowing when and After six months of continuous employment, all New Zealand
employees are entitled to five days’ sick leave with pay and
how to ask for help and being aware of your rights at
thereafter five days’ sick leave for every 12 months of work. Sick
work often helps.
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
THE BENEFITS OF WORK www.employment.govt.nz.
On the positive side, paid work provides many advantages. You
maintain your financial independence and earn money to support IF WORKING ISNT WORKING
the caring. Work provides a break from caring, as well as social With support from your employer there’s every chance you will be
networks and friendships. able to balance your caring and work roles. But don’t beat yourself
up if you find it hard.
Research under the auspices of no less than the OECD, for example,
cites the benefits of carers working at least part time. 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
However, combining caring and work has its challenges.
for you? Or you might want to consider working as a freelancer or
contractor, or picking up casual ‘temp’ work where you can turn
WORK ISSUES down assignments if they don’t fit with your caring responsibilities.
Under New Zealand law, you do not have to tell your employer
about your care responsibilities. However, you may want to tell your FINANCIAL SUPPORT
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 A Living Support Payment is available to full time carers, excluding
work longer hours when asked. 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
Telling your employer also gives them the opportunity to consider person you care for or yourself. www.workandincome.govt.nz or
how they can support you with your additional responsibilities. 0800 559 009.
6 This may include flexible arrangements if the employer has room to
move. Good employers want happy, well rested employees and to
treat people well. GETTING THE REST AND SUPPORT YOU NEED
Everyone’s different, but whether you work or not, at some point it’s
You may want to discuss flexibility around work start times or finish
not unlikely you will need to find some practical help with caring.
times. And also consider reduced hours, or working at home for
Finding the right help is essential.
some of your week.
Employers are legally required to consider any request for more Options include:
flexible working arrangements and must provide you with an • asking family and friends to help on a paid or unpaid basis
answer within a month. They can decline your request for several • employing someone directly
reasons regarding their ability to accommodate your requests. The • using assisted living technologies that can help monitor/improve
reason for declining the request must be specific. Fortunately, there the well-being of the person you care for while you are at work.
is no longer a limit on how many requests for flexible working hours
you can make during a year—the rules have changed. MORE (GENERAL) INFORMATION
It’s important to make sure you have an idea of what sort of work Everyone caring for someone with Parkinson’s needs the right
options would suit you now and into the future, and your rights in support and knowledge. There are good resources at:
the workplace before talking with your employer. (If you’re unsure www.carers.net.nz (including the Guide for Carers)
it may be worth giving your union a call or visiting the Ministry of www.employment.govt.nz
Business, Innovation and Employment (MBIE) Employment Service
www.carersaustralia.com.au
website at www.employment.govt.nz.)
www.parkinsons.org.nz
Examples of possible concessions and support by employers include: www.parkinsons.org.uk
• access to a telephone to check on the person you care for
(breaks to call home) SOURCES:
• flexible working
• leave arrangements (paid or unpaid) www.carers.net.nz | www.employment.govt.nz
• an employee assistance programme. www.carersaustralia.com.au | www.mbie.govt.nz
www.oecd.org | www.parkinsons.org.nz
You can get free employment information by phoning the Ministry www.parkinsons.org.uk
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
THE PARKINSONIANFACT SHEET
Wearing off and involuntary movements (dyskinesia)
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
WHAT ARE THE MOVEMENT PROBLEMS
when you freeze, it affects certain movements and not others. You
SOMETIMES ASSOCIATED WITH LONG TERM may not be able to walk, for example, but you’re still able to reach
LEVODOPA USE? for a cup. 7
If you go from having good control of your symptoms to having
less control, you may be experiencing motor fluctuations. For more information, see our Parkinson’s and
Freezing factsheet.
Motor fluctuations may come on slowly or quickly. They typically
happen when levodopa is wearing off, but they may occur at other
MOOD AND EMOTIONS
times too. If the fluctuation is caused by your levodopa based
medication wearing off this is called “end of dose wearing off’ or In addition to motor (movement) symptoms related to wearing off
just “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
In the early stages of Parkinson's, you may not notice when a dose your Parkinson’s Community Educator or family doctor regarding
of levodopa begins to wear off. But as Parkinson's progresses, any such issues.
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 DYSKINESIA (INVOLUNTARY MOVEMENTS)
Parkinson's when people have been taking Parkinson’s medications
Dyskinesia is uncontrollable muscle movements. They include
for several years.
jerks, twitches, twisting or writhing movements, or restlessness.
A lot of people with Parkinson’s experience motor fluctuations Involuntary movements can affect various parts of the body such
or involuntary movements after five to 10 years of levodopa as your arms, legs and the upper half of your body. The side of
treatment. Some people may develop them earlier, especially your body most affected by Parkinson’s is where they often start
if they are on a high dose of levodopa. People who develop and they usually occur in the legs before the arms.
Parkinson’s before the age of 40 are also at a high risk of There are different types of involuntary movements, and when and
developing motor fluctuations and involuntary movements. how often they appear differs from person to person. Some people
experience involuntary movements for most of the day, while
“ON” AND “OFF” VERSUS “FREEZING” others may have them just prior to their next dose of medication.
Being “on” is when your symptoms are controlled and when “Peak dose”, when levodopa is at its highest level in the
you feel you can do the most. Being “off’ is when Parkinson's bloodstream and in your brain, is another time when you are more
symptoms come back and affect you the most. likely to experience this side effect.
Being “on or “off” is different from freezing. There are different Because dyskinesia causes people to move around so much it can
ways of managing the swings due to freezing and “on/off” swings. cause substantial weight loss. If you are worried about this, speak
During “off” periods you are hardly able to move at all, so walking, to your family doctor or Parkinson’s Community Educator.
MARCH 2018FACT SHEET – CONTINUED FROM PREVIOUS PAGE
HOW CAN I MANAGE MOTOR FLUCTUATIONS MANAGE YOUR STRESS
AND INVOLUNTARY MOVEMENTS? Stress may contribute to motor fluctuations and involuntary
movements, therefore finding ways to stay relaxed is highly
MEDICATION recommended. You could try complementary therapies such as
Treating motor fluctuations and involuntary movements can be massage or exercises such as Tai Chi or yoga.
complex. Reducing your dose of levodopa to reduce involuntary
movements, means your Parkinson’s symptoms may be less For more information see our Parkinson’s and Complementary
controlled and you may have more wearing off or “on/off”. Therapies factsheet.
You will need to discuss any problems you have with your If you are frequently highly stressed or anxious, it’s recommended
Community Educator, family doctor or specialist. If your symptoms you ask your Parkinson’s Community Educator or family doctor for
suddenly become worse, make sure to speak to them as soon as advice on managing these conditions.
possible. Your health professional can advise you on what changes You may find dealing with people’s reactions to your involuntary
you can make to your medication regimen to balance treating movements annoying, stressful or embarrassing. It may be worth
motor problems and keeping your other Parkinson’s symptoms explaining to those around you that the symptoms are part of
under control.
your condition and they shouldn’t be alarmed or concerned if
Options include avoiding peaks and troughs in doses of levodopa. they happen.
The strategy might be taking smaller and more frequent doses of
levodopa but keeping the overall amount the same. MAKE THE MOST OF “ON” TIME
You may also be advised to change to a different type of levodopa If you start to experience your medication wearing-off, it is
that helps even out levels in your bloodstream. You could also take important that your medication regimen is managed so you get
it in another format, for example by intestinal gel. Additionally, the most of your “on” time.
there are other Parkinson’s medications such as amantadine that
This becomes more complicated if you also begin to have
can help levodopa to work better. Unfortunately, amantadine can
involuntary movements. You might then have to decide on
have serious side effects of its own and does not work for all who
a compromise between more “on” time with involuntary
experience dyskinesia.
movements, or more “off” time with other Parkinson’s symptoms.
If you take dopamine agonists from early on after your diagnosis Many people tend to prefer more “on” time, even with involuntary
8 of Parkinson’s, for example lisuride or ropinirole, there is some movements, but everyone is different and you should discuss your
evidence to suggest that you may be less prone to motor options with your Parkinson’s Community Educator, family doctor
fluctuations. However this may mean your symptoms are less well or specialist.
controlled and dopamine agonists can cause dyskinesia as well.
KEEP A DIARY
DIET To make the most of your “on” time with the least possible
For some people eating protein (such as in fish, meat, eggs, cheese involuntary movements, it can be helpful for you or the people
and beans) can cause problems by reducing or slowing down the who care about you to keep a 24-hour diary.
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 This will show when your symptoms and fluctuations happen,
diet. However, you may find it helpful to take your medication at and for how long. Record this along with the times you take your
least 30 minutes before you eat to allow the medication time to medications, and the medication dosages.
start working. Talk to your Parkinson’s Community Educator, family Some women with Parkinson’s find their motor symptoms
doctor or specialist about when to take your medication. fluctuate in line with their menstrual cycle. This link has not
been proven, but keeping a diary will help you see whether your
SURGERY monthly cycle is having an effect on your movement symptoms.
Surgery may be the best option for people who do not respond Recording your progress, issues you encounter and similar can
well to medication. It may also be used for people who are help you and your healthcare professional understand how
experiencing particularly troublesome involuntary movements. your medication affects you, and how often you’re experiencing
A type of surgery called deep brain stimulation can help increase difficulties. It can also give a better idea of what strategies to use
the amount of time you are in the “on” state. This can mean that to smooth out fluctuations.
you’re able to reduce your Parkinson’s medication and help reduce For more information see our Preparing for a Medical
side effects such as involuntary movements. Appointment and Keeping a Diary: for carers factsheets.
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 Sources: Parkinson’s UK
Stimulation factsheet.
THE PARKINSONIANGET GOING
The Tinman Club
Throughout the year thousands of New Zealanders of all ages push themselves to meet the challenge of events like
9
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 “In recent times, there has been a real shift in the thinking about
of the Classic Builders Tinman Triathlon in Tauranga and they the way we respond to the challenge of living with Parkinson’s.
made quite an impact in their Parkinson’s New Zealand red Regular medication mostly deals with the symptoms while
t-shirts. This iconic sporting event was held at Mount Maunganui Parkinson’s deals to you. The opportunity exists for many people in
on 19 November. the early stages of Parkinson’s to push back against this condition
that is with you for the rest of your life.
Parkinson’s Waikato UPBEAT member Martin Bennett, supported
by his daughter Stephanie, trained to compete in the triathlon. “I am personally making significant progress and believe if you
Martin was joined by Waikato UPBEAT members. The unity, are prepared to work hard, really hard, at maintaining your
enthusiasm, resilience and sheer grit that Martin and Stephanie balance, coordination, flexibility, strength, general motor skills
showed led to a group of over 60 athletes deciding to Get Going and a positive outlook on life, you also make significant gains in
for Parkinson’s. Many of them had never taken part in a triathlon. your quality of life by getting involved in programmes such as
PD Warrior, boxfit training, specialised physio plans and maybe
The group named themselves the Tinman Club and they created triathlons. This approach is making a big difference to many
a Facebook group to share news and help motivate each other people who are picking up the challenge and we hope to help and
during the lead-up to the challenge. Their efforts have raised encourage people with Parkinson’s to give it a good GO!”
over $15,000.
The Tinman Triathlon was a great experience to help build
Martin is keen to let people know that exercise has helped him confidence and make exercise part of our daily routines. Everyone
greatly on a number of fronts and that perseverance is key. Here is still welcome to join the Tinman Club Facebook group to view
Martin shares his thoughts about “getting going” for Parkinson’s. more posts, photos and videos.
“The idea was to raise awareness of the importance for people For more information about how you can Get Going for
with Parkinson’s to be active and push back against this Parkinson’s please call 0800 473 4636 or email getgoing@
challenging condition and to support Parkinson’s Waikato and parkinsons.org.nz
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.
DECEMBER
MARCH 2018
2017HMNZS TARANAKI AT PEARL HARBOR C. 1963
NZ Navy veteran’s compensation battle update
In the September edition of The Parkinsonian we published a cover After we went to print with this story, you got involved. Your phone
story about a landmark decision by Veterans’ Affairs New Zealand. calls, emails and engagement on social media led to a front page
Veterans’ Affairs provided one of our members with an entitlement story in the New Zealand Herald and a further investigation into
to disability compensation for his Parkinson’s, a condition that is the use of this chemical solvents in other New Zealand workplaces.
attributed to his operational service on a Royal New Zealand Navy There was additional media coverage about this issue overseas.
Ship during the Malayan Emergency.
Parkinson’s New Zealand is working to achieve the best outcomes
Veterans Affairs’ New Zealand has recognised that Parkinson’s is for people living with Parkinson’s. We continue to partner with the
linked to a toxic solvent used within the Navy, both on ships and on Royal New Zealand Returned Services’ Association (RSA) and we
shore, and will now be paying disability compensation. The Royal are in discussions with ACC about any claims specifically for TCE
New Zealand Navy used a number of chemical solvents on ships exposure in the workplace causing Parkinson's.
10 beginning in at least the 1950s. Among the chemical solvents was
trichloroethylene (TCE), which is thought to be among the most If you or someone you know has been exposed to TCE, please talk to
damaging to human health, with links to a number of adverse your doctor or your Parkinson’s Community Educator.
health effects including Parkinson’s.
PHARMAC to change levodopa funding
Parkinson’s New Zealand recently met with PHARMAC to discuss This means that if you want to continue taking Kinson tablets, you
Parkinson’s medications including levodopa. Nearly 50 years after will have to pay the difference of $2.03 at the pharmacy for your
its discovery, levodopa remains the cornerstone of Parkinson’s script (ie, the difference between the subsidised and non-subsidised
therapy, and a large majority of people with Parkinson’s take brands of the medication).
levodopa medication.
From 1 May 2018, Kinson will no longer be funded. This means that
PHARMAC has advised Parkinson’s New Zealand that they may Sinemet will be the only funded brand of levodopa with carbidopa
make a change to their funding policy for levodopa. tablet 100mg with carbidopa 25mg. You should talk to your doctor
if this presentation of Sinemet is not working for you.
If you are one of the approximately 950 people with Parkinson’s
in New Zealand who have been prescribed the Kinson brand of All other doses of levodopa with carbidopa are unchanged, with
levodopa with carbidopa tablet, 100mg with carbidopa 25mg, from Sinemet being the only funded brand.
1 February 2018, your doctor may prescribe the brand Sinemet. This
may look different, but the active ingredients in the medication are For more information about levodopa medication, please refer to
the same, and there is no cause for concern. our Medication Used in the Treatment of Parkinson’s booklet.
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.
THE PARKINSONIANNEWS FROM AROUND THE COUNTRY
CHRIS BROWN, NATIONAL OFFICE TEAM MEMBERS
CAPE SANCTUARY WALK, HAWKE’S BAY JOHN HENTON AND JULIANNE RYAN, AND CHRIS L’ANSON
Here are just some of the events taking place around the country.
AUCKLAND WELLINGTON
As we go to print Parkinson’s Auckland is hosting a Golf Day In February visitors from the UK Chris l'Anson and Chris Brown
Tournament at the Wainui Golf Course on Monday 19 March. Teams stopped by Parkinson's New Zealand National Office for a chat
of players will tee off at 1pm with a shotgun start. The day will finish and a cuppa on their way to the Wellington Ferry Terminal. Chris
with a meal, auction and prizegiving. Many thanks to volunteer and Chris were cycling from Cape Reinga to Bluff, to raise funds
Ann Cambie for organising this fabulous event. We also wish to for our friends at Parkinson's UK and Claro Mental Health. Over 19
acknowledge the support of our generous sponsors Summerset days, this amazing team covered over 2,000km and 60,000 feet of
Retirement Villages and Wainui Golf Course. ascent, cycled through a cyclone and raised over NZ$11,400.
In addition Parkinson’s Auckland will host a World Parkinson’s Day MARLBOROUGH
seminar on Wednesday 11 April at the Greenlane Christian Centre,
17 Marewa Road, Greenlane. Join us for tea and coffee and biscuits Parkinson’s Marlborough will host a Satellite Neurophysiotherapy
Clinic with an evening talk on 4 May on the topic of 11
before we enjoy our guest speaker Associate Professor Dr Maurice
Curtis at 1pm. Gold coin donation requested to help cover costs. “Neuroplasticity”. Online bookings for individual assessment with
neurophysiotherpist Gilly Davy are available. Contact Community
Educator Janine Ready for more information on 0272551299.
CENTRAL PLATEAU
In November Parkinson’s Central Plateau was selected as one of
OTAGO
the eight recipients of the Rotary Charitable Luncheon Trust annual
“fundraiser”. Parkinson’s Central Plateau was absolutely delighted On 10 March Dr Louise Parr-Brownlie gave a talk for Brain Day
2018 at the Otago Museum. Louise discussed research in the
and grateful to receive $9,000 as their share of the proceeds from
Parkinson's brain and how this knowledge is being applied to
the day.
develop and test a potential new treatment. Parkinson's Otago
Community Educator Paula Ryan had a stall at the event. Visit
HAWKE’S BAY brainweek.co.nz for more info about other Brain Day events on 17
The second Parkinson's Hawke's Bay Cape Sanctuary Charity Walk March in Christchurch and 21 July in Auckland.
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.
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.
MARCH 2018POSTAL BALLOT
Have your say
The governance Board of The Parkinson’s New Zealand Charitable Financial members will have one vote for each open position.
Trust will be made up of skilled trustees responsible for setting There are two (2) open positions, so each paid member will have
the strategic direction of the organisation and ensuring that two (2) votes, for two (2) people.
strategy is successfully implemented. Visit www.parkinsons.org.nz to view more information about
This year financial members of current divisions and branches each of our candidates and access the electronic voting form.
are invited to vote. When possible we prefer members vote If you have questions or need more information please contact
electronically to save costs, however, if you are unable to access us at info@parkinsons.org.nz
the online voting form, you can use the postal ballot form
provided below and post it by Monday, 23 April 2018 to:
Parkinson’s New Zealand
Po Box 11067
Manners Street
Wellington 6142
Candidates for the Board of Trustees
Short biographies for each of the candidates are below: HUGH KIRBY TAYLOR
Hugh Kirby Taylor has been a member of the Parkinson’s New
JUDY CLARKE Zealand Board for the past five years. Kirby recently retired as
Judy Clarke has been a member of the Parkinson’s New Zealand an Authorised Financial Adviser working for the DecisionMakers
Board for the past three years. She previously worked as a group of advisers.
self-employed podiatrist who owned her own practice and she
worked within the diabetes centre at Hawke’s Bay DHB. Judy CHRISTINE MERCER
12 serves on the committee of Parkinson's Hawke's Bay. She was
diagnosed with Parkinson’s in 2007. Christine 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
ROBYN COTTON Parkinson’s Bay of Plenty since March 2017 and has cared for
Robyn Cotton is a business consultant, and she brings 10 her husband with Parkinson’s for 20 years.
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.
POSTAL BALLOT
for the Election of Trustees of the Parkinson’s New Zealand Charitable Trust Board
I NAME
of ADDRESS
TELEPHONE EMAIL
Confirm that DIVISION / BRANCH
I am a member of
SIGNATURE: DATE:
Parkinson’s New Zealand Charitable Trust Board Trustees
Please clearly mark ( X ) to vote. Vote for no more than two (2) candidates:
Judy Clarke Robyn Cotton Hugh Kirby Taylor Christine Mercer
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