VOL. 20 – NO.2
Put Parkinson’s on the agenda this election
The General Election is now only three months away. We want everyone elected to Parliament to understand and prioritise the needs of people affected by Parkinson’s. The Parkinsonian sent out a set of questions to the Parliamentary parties. We would like to thank Labour, the Green Party, New Zealand First and the Māori Party for their responses. National, Act and United Future have not provided answers. We are particularly disappointed with the National party, as Health Minister Jonathan Coleman’s office assured us they would respond and we delayed the publication of The Parkinsonian for this. Three weeks after deadline and many phone calls and emails we could no longer wait. This lack of engagement is surprising and unfortunate, not least because neurological conditions such as Parkinson’s are the main cause of disability for New Zealand adults. Unsurprisingly, the Opposition parties refer to funding shortfalls in their answers, both in terms of organisations such as Parkinson's New Zealand being inadequately funded and underfunding in terms of the whole health system. Equity, access to services and the importance of the information provided by Parkinson’s New Zealand came through as consistent themes.
THE PARKINSONIAN: How will you recognise the economic and social impact our services have and work with us to ensure sustainability? LABOUR: As part of our plan to improve the treatment of
Parkinson’s in New Zealand, we will restore the lost funding in health. Infometrics research has shown that over the last six years a $1.7 billion hole has developed in health funding. A Labour led Government will restore this funding in stages when it is elected. We will make sure that treatments for Parkinson’s and other neurological conditions will be properly funded. We will also make sure that Pharmac is better resourced to be able to invest in the latest drugs for Parkinson’s.
GREENS: Our health system has been underfunded by $1.7
billion since National came to power. It is inevitable that the cuts made will affect the preventative services that are offered as health professionals are forced to choose only the most urgent cases to prioritise. The Green Party is committed to free healthcare provided by a well-funded public health system, delivering high quality and safe care, which everyone can access in a timely way. We would invest in preventative measures that could help with further cost escalations. This would ensure that people would enjoy a higher standard of health.
NZ FIRST: New Zealand First values the work that NonGovernment Organisations (NGOs) do to ensure that New Zealanders get the best healthcare that they need. However, the Government’s cost cutting has pushed many NGOs to breaking point, leaving staff and patients at risk. New Zealand First recognises the valuable contribution of NGOs, such as Parkinson’s New Zealand, to our healthcare sector and would look to ensure interoperability and a focus on patient needs.
MĀORI PARTY: The Māori Party believes it is timely to initiate a review of the funding model which sees DHBs act as both funder and provider. The proposed result of the review will see a significant shift in policy, planning, service design and delivery for NGOs and other organisations struggling to meet the demands on their services. This review may also result in a greater share of resources being placed with organisations such as Parkinson’s New Zealand, and ultimately, improved health outcomes for whanau who are impacted by Parkinson’s.
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THE PARKINSONIAN: What is your party’s commitment to DIAS (Disability Information Advisory Service) and other contracts with organisations like ours, and to providing independent information and advice to people living with Parkinson’s, their families, caregivers and the general public?
GREENS: We would explore the possibility of having greater
LABOUR: We know New Zealand depends on the goodwill,
need to be done to establish the need and funding available.
understanding and knowledge of organisations like Parkinson’s New Zealand and we recognise the importance of Government support, no matter how modest. The delivery of health policy in New Zealand, whether it’s the treatment of Parkinson’s or elective surgery, depends on a high functioning DHB sector. We intend to relieve the financial stress on New Zealand’s DHBs which are facing a rapid deterioration in their finances. They have declined from last year’s deficit of $54 million to a predicted $85 million deficit in the coming financial year.
GREENS: Independent information and advice can be so treasured by families and patients who need help navigating the condition itself as well as the services available. The Green Party appreciates the important work that is done with people to help them and would work to ensure that the services are supported better. NZ FIRST: New Zealand First supports DIAS. New Zealand
First recognises the right of every New Zealander to equality of opportunity. We would ensure that all agencies delivering services to people with disabilities meet standards and demonstrate a constructive relationship with their client group.
MĀORI PARTY: The Māori Party is committed to ensuring timely access to appropriate information, advice and support for people living with Parkinson’s, their whanau, caregivers and the general public. Sufficient funding for services that specialise in quality medical care and support for those also affected is important.
THE PARKINSONIAN: Will you make neurological conditions a health strategy priority? If not would you please provide your reason? LABOUR: Neurological treatment will be a health priority along with electives, mental health and other key health issues. With over 13,000 New Zealanders affected by Parkinson's this has to be a focus for us.
GREENS: The Green Party would encourage the health strategy to engage with all New Zealanders to ensure that optimal outcomes for the most New Zealanders are achieved.
NZ FIRST: Yes. MĀORI PARTY: Yes, the Māori Party believes that neurological conditions ought to be a health priority, particularly given the greater prevalence of such conditions in our ageing population.
THE PARKINSONIAN: :Will you create a neurological desk at the Ministry of Health? LABOUR: Yes.
specialist knowledge within the Ministry of Health. With the current demographics of an ageing population, it is important that there is enough attention and resources going into neurological conditions.
NZ FIRST: To completely answer this more research would MĀORI PARTY: No, but the Māori Party supports greater
coordination of resources and support services that ensure adequate information, advice and treatment options for those living with Parkinson's.
THE PARKINSONIAN: People with Parkinson's face a number of barriers to integrated, long-term care. This includes the ability to access services, good information and advice. Can you tell us about your policies to increase people’s access to health care services? LABOUR: Funding and cost has been identified as a key factor is accessing primary and secondary health care services. Do not underestimate the benefit that will accrue to New Zealanders by Labour's pledge to restore the $1.7 billion the Government has stripped from the sector over the past six years.
GREENS: The Green Party wants a high-quality health system
that gives everyone a good life and a fair future. We believe in promoting good health and improving quality of life. We are committed to a New Zealand in which all people can actively participate in their communities and their health care, are valued for their abilities and gifts, and lead rich and satisfying lives. We are committed to a public healthcare system that provides the same access and level of care regardless of wealth or income. People should be able to access support and services according to need.
NZ FIRST: A properly funded and resourced public health
service will not only provide better for our country, but save money in the long run. New Zealand First does not want to undertake whole-system reform and add to the ‘structural fatigue’ caused by successive government overhauls. Spending smarter must be a focus in the health sector. Not all issues can be solved by increased spending. Our main health principles include: • Relate health budget to population and forecasts of population growth. • Adequate funding for and improved access to palliative care services. • Adequately resource elective surgery and provide additional waiting times funding so as to firmly establish guaranteed maximum waiting times for a range of treatments. • Introduce the SuperGold Card Health Check Bill, providing cardholders with three free doctor’s visits per year. • Require parent category migrants to have health insurance on arrival and maintain it for 10 years, remove fringe benefit tax from health insurance, introduce the SuperGold health insurance premium rebate, and make health insurance a requirement for parent category visa applications. Article continued on page 3
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National voted down the SuperGold Health Check Bill and Affordable Healthcare Bills. Both would have alleviated pressure on the public healthcare system.
MĀORI PARTY: We recognise that the health of whanau is
affected by determinants beyond the health sector and that the health status of New Zealanders varies considerably by ethnicity, with Māori experiencing a greater burden of disease than nonMāori. As such, we believe a review of current funding priorities needs to be undertaken, to ensure a more equitable approach to access to appropriate health care.
NZ FIRST: All New Zealanders should have equal access
to healthcare, including people with Parkinson's. People with Parkinson's and their families should have timely access to health care services and the ongoing support that they need.
MĀORI PARTY: The Māori Party’s vision for Parkinson’s care
in New Zealand is care which upholds the right of whanau to determine their own health priorities, and to participate fully in all decisions that affect them. Article continued on page 4
THE PARKINSONIAN: We’re eager to hear your vision for Parkinson’s care in New Zealand. LABOUR: We want to make sure that Parkinson's is no longer
a sometimes forgotten condition in New Zealand. To that end we want to see it recognised by the Ministry of Health both in terms of public awareness and funding.
GREENS: Labour and the Greens have been touring the country with Grey Power to hear from older people and aged care sector workers about issues in aged care, with a view to updating the 2010 report we did on this topic. We've heard that many issues about the quality of aged care still remain, including insufficient funding for and access to in-home care, and the training and remuneration of aged care workers. The equal pay settlement in the Terranova case will improve pay rates for workers and hopefully the quality of residential care. The Green Party is calling for improved oversight including an Aged Care commissioner, and better auditing and transparency in the sector.
MP Poto Williams (left) and Parkinson's New Zealand Chief Executive Deirdre O'Sullivan (right) discussing the needs of people with Parkinson's in New Zealand at Parliament.
A WORD FROM THE CHIEF EXECUTIVE
Tena Koutou Katoa There has been significant media coverage devoted to elections (in the USA and UK) and some surprising decisions in recent times. As a result many people, whatever their political leanings are, have found a new or reinvigorated interest in politics and political decision making and processes. With our own New Zealand election coming up in September, it is important that we make informed decisions. To help with these we thought readers would like to know some of what the political parties are offering for people with Parkinson’s and others with long term health conditions. Parkinson’s New Zealand invited all the parliamentary parties to submit statements on their policies. The responses we received can be seen on pages 1-5. Our AGM will be held in Wellington on 27 May as this edition goes to print. I am looking forward to the opportunity to learn more about the hard work and achievements of volunteers and staff around the country. The Parkinson’s New Zealand Council will also meet on 26 May to discuss our ongoing Parkinson’s Pathway Project. We are working hard to ensure our organisation is strengthened to meet recent and upcoming legislative changes and challenges to service provision.
On page 5 we include an invitation for our UPBEAT members to attend the 2017 UPBEAT weekend in Hamilton. We hope to be able to reach more people with early onset Parkinson’s this year. It is a great opportunity to engage with world class speakers and meet other UPBEAT members. I would like to extend a special thanks to our friends at STADA for helping our Clinical Leader Sharon Mackie to attend an International Parkinson’s Disease Conference in Newcastle, NSW, Australia. Sharon enjoyed discussions by an inspiring line up of speakers on a wide range of topics, and she's brought back lots of information to share with our Community Educators. With best wishes to you all. Nga mihi nui
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THE PARKINSONIAN: What are the key barriers to achieving this vision? And what is the plan for overcoming these barriers?
having good information and the confidence to act on it for the wellbeing of your family. It can also be as simple as upholding values and principles of the person’s cultural beliefs.
LABOUR: The only barrier to a new deal in health for the public
To give appropriate effect to our vision for Parkinson’s care, the Māori Party believes there needs to be greater investment in whanau-based and home-based culturally appropriate care options to enable people burdened with Parkinson’s to choose to remain in their homes, with access to appropriate respite care.
is the failure to elect a Labour led government this September.
GREENS: The key barrier is underfunding. The Green Party
has also been calling for an inclusive mental health inquiry to ensure that New Zealanders' mental health is being looked after. There are concerns that our overstretched health system is not able to give mental health the priority that it needs. This means that conditions are escalating and causing undue suffering. We would look into these issues thoroughly, and hear back on what needs to be done to ensure our health system continues to deliver for the health and wellbeing of all New Zealanders.
NZ FIRST: The barriers to achieving these services are an
underfunded health system, which is struggling to cope with population grown, from massive immigration, and an ageing population. We hope that the policies in the previous answer will help to reduce the barriers to accessing health services for all New Zealanders. Paired with the evaluation and full implementation of the New Zealand Health Strategy and the Healthy Ageing Strategy, we believe New Zealand will be on the path to a fairer health system. While more can always be done, we believe spending smarter must be the present focus of the health care system to ensure timely access to quality services. 4
MĀORI PARTY: For many whanau, and particularly
whanau Māori, limited access to primary, secondary and tertiary prevention or intervention services often acts against their general health and wellness. The incidence and prevalence of Māori with Parkinson’s is expected to increase in the coming years, and this will place increased need for support or care for family members afflicted with Parkinson’s disease, particularly as their condition deteriorates. We believe that tāngata whenua are entitled to determine their own health priorities for development, and to participate in all decisions that affect them. Māori Party policy prioritises and affirms whanau to take control of achieving their own outcomes. For those who are impacted by Parkinson’s, it can be as simple as
The Māori Party will therefore design arrangements for the timely access to high quality and appropriate health care, irrespective of the ability to pay, for organisations such as Parkinson's New Zealand.
Get involved There are many issues such as housing affordability and mental health which are going to potentially take up a lot of election debate space, but we must all keep the pressure up. Parkinson’s care in New Zealand is very important and it’s about time this was reflected in political debate. This General Election, make sure Parkinson's is a health strategy priority and people's access to Parkinson's care is protected. Find out how to put Parkinson's on the agenda below.
ENROL TO VOTE. To make it as easy as possible to vote make sure you are correctly enrolled now.
EMAIL YOUR LOCAL MP and ask if they will take action
to make neurological conditions a health strategy priority. We recommend everyone in the Parkinson's community should meet with, ring or write to their MP. You can even ring one of the offices of the different political parties above and voice your concerns about neurological conditions getting sufficient air time.
ATTEND LOCAL MEETINGS and ask candidates about
our key issues below. You can let us know their responses by emailing firstname.lastname@example.org. Whether you email your local candidate, enrol to vote or attend a local meeting, you're helping us to put Parkinson's on the agenda this election. There are 13 thousand reasons to protect Parkinson's care in New Zealand. We must act now. With your help, we can identify who to approach in the new Parliament to support our work. What will you do? Article continued on page 5
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Our key issues this election PROTECT OUR SERVICES AND WORK WITH US TO ENSURE SUSTAINABILITY
IMPROVE ACCESS TO HEALTH SERVICES FOR PEOPLE WITH PARKINSON'S
Parkinson's New Zealand employs health professionals who provide home visits and prepare individualised assessments and care plans for clients and their carers, run support groups and offer neuroprotective exercise programmes and education and information. We also train health professionals and the nonregulated health care workforce. Every day our staff are called on for information and support by DHBs. This work contributes to fewer hospital admissions and shorter stay times. Yet, our Parkinson's Community Educators are working as the only professional members of multi-disciplinary health teams whose salaries have to be paid entirely through fundraising. Their work saves New Zealand taxpayers an enormous amount of money but we only have a small DIAS contract which cannot be used for salaries.
People with Parkinson's face a number of barriers to integrated, long-term care. This includes the ability to access services, good information and advice, leaving people without the support they need.
MAKE SURE NEUROLOGICAL CONDITIONS ARE A HEALTH STRATEGY PRIORITY
After the election Once the election takes place on 23 September we'll get in touch with all MPs to welcome them to Parliament, brief them on key issues and urge them to help improve access to health services for people with Parkinson's. Contact your local branch or division and find out more about how to make our voice even stronger. All branch and division details are on our website or call 0800 473 4636 for more information.
Collectively, neurological conditions are the biggest cause of disability among adults in New Zealand. Yet, this does not seem to be recognised by the current health strategy. You can download and read the strategy on the Ministry of Health's website at www.health.govt.nz. 5
Outward Bound Course
Upbeat Weekend 15-17 SEPTEMBER 2017 HAMILTON Registrations are now open for the 2017 UPBEAT weekend in September. Hosted by the Waikato branch the event will be held at the Airport Conference Centre in Hamilton.
OUTWARD BOUND COURSE Every year Parkinson’s New Zealand runs an UPBEAT Outward Bound course. This course provides an opportunity for members and support staff to participate in a 6-day adventure in Anakiwa filled with mental and physical challenges and a chance to bond with other members. The course is very rewarding giving participants a chance to reassess their capabilities and accomplish tasks with the support and supervision of the experienced Outward Bound team. A great friend and supporter of Parkinson’s New Zealand, pharmaceutical legend Sir Graeme Douglas, died in 2016. We are so grateful to Douglas Pharmaceuticals for our continued partnership and their sponsorship of the 2017 Outward Bound course.
Presentations during the weekend will include the latest research updates and how to get the most out of exercise. There is also plenty of time for members to meet and spend time with other people with early onset Parkinson’s and their partners. The UPBEAT weekend is open to people diagnosed before the age of 60 and currently under 65 years of age. The cost is $140 person including accommodation or $70 per person without accommodation. Hardship grants are available. For more information email UPBEAT@parkinsons.org.nz
NEWS & RESEARCH BRAIN CELLS REPROGRAMMED TO MAKE DOPAMINE
Scientists have discovered a way to “reprogram” certain brain cells in mice into the neurons that produce dopamine, a neurotransmitter whose loss is a hallmark of Parkinson’s. The researchers also demonstrated the reprogramming in human brain cells grown in cultures. The findings could pave the way for a therapy that stops the progression of Parkinson’s by replacing lost or damaged dopamine-producing, or dopaminergic, neurons. Like all biomedical research, this approach will require more development and testing before it can be considered for treating people with Parkinson’s. The study was published in April in the journal Nature Biotechnology. Researchers led by Ernest Arenas of the Karolinska Institute in Stockholm discovered that a type of brain cell called an astrocyte can produce dopaminergic neurons. Astrocytes are star-shaped cells whose function is to protect, feed and support neurons and their activity in the brain. The team learned that it is possible to use a viral delivery system to transmit three genes to human astrocytes that reprogrammed some of them into dopamine-making cells. Researchers also transformed astrocytes into neurons in mice with Parkinson’s. The transformation corrected motor problems in the mice, including gait impairment. Together, the results suggest that, rather than transplanting neurons into the brains of people with Parkinson’s, it might be better to activate certain genes to transform existing brain cells into dopaminergic neurons. More studies are needed to determine whether this method could be used to trigger the selective production of striatal dopaminergic neurons. The striatum is the brain region affected by the loss of dopaminergic neurons in Parkinson’s. “The next steps to be taken toward achieving this goal include improving reprogramming efficiency, demonstrating the approach on human adult striatal astrocytes, developing systems to selectively target human striatal astrocytes in vivo, and ensuring safety and efficacy in humans,” the study authors concluded. Source: parkinsons.org.uk | nwpf.org
BREAKTHROUGH IN UNDERSTANDING HOW PARKINSON’S DEVELOPS New evidence from New Zealand researchers on how Parkinson’s spreads through the brain offers a breakthrough in understanding how Parkinson’s develops. The evidence published in February in Scientific Reports – Nature reveals that proteins known as alpha-synuclein in Parkinson’s could be spread from cell to cell. These proteins are the chief component of abnormal structures called “Lewy bodies” and are found inside brain cells in Parkinson’s and some related conditions. The discovery made by researchers at the University of Auckland’s Centre for Brain Research provides evidence on how Parkinson’s develops and will help lead to new treatments. Associate Professor Curtis, who leads research on Parkinson’s at the Centre for Brain Research, said the new evidence is the first proof, using donated human brains, of the mechanism that
cells use to spread this key alpha-synuclein protein in a person affected by Parkinson’s. Dr Curtis said it was previously known that Lewy bodies accumulated in susceptible cells, but it was not known how the proteins could spread from cell to cell. The implication was that Parkinson’s could be stopped early, Dr Curtis said in a news release. Cells used structures called tunnelling nanotubes that act like conduits between two cells to spread the alpha-synuclein protein. The research also showed that cells in the blood vessels called pericytes appear to harbour and spread the alpha-synuclein protein rather than just neurons. Dr Curtis said while the research had only been conducted in cells and not live brains, he was very proud of his team’s work including that of post-doctoral researcher and lead author Dr Dieriks. The work was made possible by the Centre’s Human Brain Bank initiative supported by Parkinson’s New Zealand and through funding from the Neuro Research Charitable Trust. Source: nzherald.co.nz | stuff.co.nz
FDA APPROVES SAFINAMIDE In April the U.S. Food and Drug Administration (FDA) approved safinamide (trade name Xadago). It was approved as an add-on therapy to increase the effectiveness of levodopa/carbidopa and was previously approved by the European Union (EU) in 2015. It is similar to but not the same as selegeline, a MAO-B inhibitor available in New Zealand.
KEEP MOVING! KEEP YOUR VOICE! KEEP YOUR LIFE!
LSVT BIG and LSVT LOUD therapies are available in NZ. Don’t wait for things to change. Contact us today to take charge of your PD and continue to live well.
Safinamide limits the number of “off” episodes, or increases in symptoms, among people on levodopa/carbidopa, clinical trials have shown. It may also reduce dyskinesia in some. It works by blocking the MAO-B enzyme that can degrade several neurotransmitters. One of the transmitters is dopamine, the lack of which is associated with Parkinson’s. It also modulates neurotransmitters related to glutamate and so has dual modes of action. By preventing the breakdown of dopamine in the brain, MAO-B inhibitors help control the motor symptoms associated with reduced levels of dopamine. This type of drug can be used as a stand-alone therapy or as an add-on to improve the action of other drugs, including levodopa, a dopamine precursor. Safinamide’s approval came after two double-blind, placebocontrolled, multinational clinical trials covering more than 1,100 participants. A once-a-day dose of safinamide led to participants having significant increases in “on” time results from levodopa— that is, times when the drug worked properly and symptoms were reduced. Safinamide not only decreased participants’ off time, but also protected them against dyskinesia, or uncontrolled involuntary movements. For more about safinamide see the February 2015 issue of The Parkinsonian. Source: parkinsonsnewstoday.com | nzherald.co.nz
TEST MAY HELP PARKINSON’S-LIKE CONDITIONS Research published in the scientific journal Neurology in February highlights a potential way to tell the difference between Parkinson’s and other conditions with similar symptoms. An international team of researchers compared the levels of a nerve protein called neurofilament light chain (NfL) in blood samples from over 500 people who had taken part in research into Parkinson’s-Plus conditions. They discovered people with atypical Parkinson’s-like conditions had higher levels of the protein than those with Parkinson’s or controls. “Parkinson’s-like conditions” or “Parkinson’s-Plus conditions” are umbrella terms that describe many conditions that share some of the symptoms of Parkinson’s, such as tremor, rigidity and slowness of movement, but are not Parkinson’s itself. Parkinson’s Plus conditions include Progressive Supranuclear Palsy (PSP), Corticobasal Syndrome (CBS) and Multiple System Atrophy (MSA). Although these conditions share similar symptoms they are caused by different things going wrong inside the brain and need different treatment approaches.
It can be difficult to tell the difference between Parkinson’s and Parkinson’s-like conditions as there are no definitive diagnostic tests. In some cases, the symptoms that allow doctors to make a specific diagnosis appear slowly, over a longer period of time, as the condition develops. One limitation of nerve protein testing is that it does not distinguish between the different atypical Parkinson’s-like conditions, however, doctors can look for other symptoms and signs to distinguish between these conditions. Source: parkinsons.org.uk | sciencedaily.com
UNDERSTANDING PARKINSON’S REQUIRES A CHANGE IN APPROACH, RESEARCHERS SAY Increasing treatment success in Parkinson’s requires a change in the way researchers and doctors view and approach this condition, experts wrote in two recent studies. “The time has come to ask what we should be doing differently,” Alberto Espay, MD, senior author of both studies said in a news release. In the study published in January in the journal Nature Reviews Neurology, researchers explain that Parkinson’s is a complex condition that includes different clinical, epidemiological and genetic subtypes, and it is not a “single” condition. “Approaching [Parkinson’s] as a single diagnostic entity has been effective for developing symptomatic therapies but ineffective when targeting neuroprotection or attempting modification [of the condition],” the researchers wrote. The authors argue that treatment and management of Parkinson’s should take into account the specific symptoms and differences of each person with Parkinson’s. They suggest that people with Parkinson’s should be classified into different clusters according to their similarities in terms of genetic and clinical manifestations and treated accordingly. They also said that the search for biomarkers should be based on these clusters of people with Parkinson’s for a better definition of Parkinson’s patterns, and not in different populations of people with Parkinson’s that frequently hide particularities of the condition. In the second study, published in March in the journal Movement Disorders, researchers call for a change in the search and use of Parkinson’s biomarkers. Current therapies are based on the identification of biomarkers associated with symptoms that predict whether initial stages of the condition will lead to Parkinson’s, but the researchers’ view is that this method is much too general to include all people with Parkinson’s. Source: parkinsonsnewstoday.com | sciencedaily.com
PARKINSON’S NEW ZEALAND | PO Box 11-067, Manners St, Wellington 6142 Phone 04 472 2796 | Freephone 0800 473 4636 (0800 4PD INFO) | Fax 04 472 2162 Email email@example.com | Web www.parkinsons.org.nz Follow us on Facebook www.facebook.com/parkinsonsnz & Twitter @Parkinsonsnz
Caring for someone with Parkinson’s
Do you help or support a partner, friend or family member with Parkinson’s? We’re here for you too.
Caring can be challenging. Carers play an extremely important role in the lives of many people with Parkinson’s, by providing much needed practical and emotional support. Caring for someone can be very rewarding however it can also be extremely hard, especially when the carer feels isolated. The needs of the carer are as important as those of the people they are caring for, yet they often get overlooked because attention tends to focus on the person with Parkinson’s. It is vital that carers maintain their own health and wellbeing while caring in order to cope with the challenges they can be presented with.
DEALING WITH EMOTIONS
The good news is that Parkinson’s New Zealand’s Community Educator Service provides support for carers as well as for people with Parkinson’s. Community Educators are available wherever you live in New Zealand. Contact us on our freephone 0800 473 4636.
Try to have contact with other carers. Many carers find contact with other people who are in a similar position is the key to providing invaluable mutual support, information, ideas and friendship. Your Parkinson’s Community Educator can connect you to a local support group.
Our trained Parkinson’s Community Educators are registered nurses, enrolled nurses, social workers, occupational therapists and speech language therapists. This means we are committed to quality and offer a professional service. Our Community Educators can provide information and advice about all aspects of living with Parkinson's, such as:
GETTING INFORMATION Our Parkinson's Community Educators are here to answer any questions you have about caring for someone with Parkinson's. They are also here to answer questions about caring for yourself. Make sure you have all the information you need to care for the person you are supporting. Parkinson’s New Zealand and Carers New Zealand can be important sources of information as can the health professionals you are in contact with.
Don’t be surprised if you have complex, conflicting and fluctuating emotions about caring. Talking about your feelings and what you are doing is important. Some people prefer to talk to the person they are caring for, or friends and whanau. Others find it helps to talk to someone who is not so closely involved in their lives such as a Parkinson’s Community Educator, counselor or support group.
NETWORKING AND SUPPORT
There are separate groups just for carers. Support groups offer the opportunity to share experiences and information. Online forums can also be a source of support.
PROVIDING INFORMATION TO STAFF AT REST HOME OR CARE FACILITY If your loved one moves to a rest home or care facility, Community Educators will work with staff to provide training and advice on best practice for the care of people with Parkinson’s. Your local Community Educator will have a wide range of knowledge and expertise about Parkinson's, and know about services available in your area. Parkinson's Community Educators are there to turn to, so nobody has to face Parkinson's alone.
FINANCIAL HELP Check what financial benefits you could be entitled to. Ask a Parkinson’s Community Educator or Work and Income to advise you on this.
Communication and Parkinson’s People with Parkinson’s may have problems with speech and communication. Many people with Parkinson’s will experience difficulties with speech and communication1. Communication difficulties can vary greatly from person to person. Any communication issues that arise should be discussed with your doctor or Parkinson’s Community Educator. We recommend you try to see a Speech-Language Therapist as early as you can after you’ve been diagnosed. Even if you aren’t experiencing any specific problems, a speech language therapist can give you some useful information about possible problems that may arise, how to spot them and what can be done about them before they have any negative effects. A Speech-Language Therapist may also spot any subtle changes that you may not be aware of. This will help you manage the symptom before it comes difficult.
VOICE AND SPEECH ISSUES If you have Parkinson’s, you may find you have some problems with your voice. For example, your voice may be hoarse or quieter than it used to be. These problems can make everyday activities, such using the phone, maintaining a good volume during the day and communicating in noisy environments like cafes, difficult. A monotonous or flat voice is usually noticed by friends and family. A monotone or flat sounding voice can make emotions such as happiness and excitement difficult to detect in the voice. You may find that your speech has become “unclear” or “slurred”. You may find it hard to control how quickly you speak or you may find it difficult to start talking. Following fast changing topics may be hard or you may find it difficult to get your thoughts together to follow a conversation. Some types of communication problems that you or a caregiver may notice can include2,3,4: • • • • •
Quiet voice volume Breathy, hoarse voice quality Monotone – flat sounding voice Difficulties starting talking Running out of breath when talking
• • • • • • • •
Rushed speech rate Imprecise articulation / slurred / unclear Lack of facial expression and small or no gestures Needing time to understand the speaker Losing train of thought during conversation Word finding difficulties due to changes in cognition Difficulties managing saliva in mouth – drooling Difficulties getting out of the house physically in order to socialise
ROLE OF THE SPEECH-LANGUAGE THERAPIST In most areas, you will be able to get in touch with a SpeechLanguage Therapist through your DHB. Referrals to a speech language therapist can be made through your Parkinson’s Community Educator, GP or Neurologist. You might find it helpful to have regular check-ups. This allows the Speech-Language Therapist to monitor whether there are any changes with your speech or getting your message across. If there are, they can recommend specific exercises or programmes to help you. If your speech does become really difficult, speech language therapists have the expertise to support you or to advise on alternative ways of communicating using various communication aids. Although the types of therapy available to you may depend on where you live, here is a list of the types of communication interventions available in New Zealand through your DHB (hospital, outpatient or home based), private practice or TalkLink: • Individual speech-language therapy sessions focusing on any aspect of communication – voice, speech rate and intonation, articulation, language or non-verbal communication. • Changes in cognition (thinking skills) can have an impact on communication. There are strategies that a speech language therapist, occupational therapist and psychologist can employ to assist these changes. • In the later stages of Parkinson’s, this may include equipment that will amplify voice or communication devices that can be used to express messages.
Parkinson’s Choirs Parkinson’s Choirs are gaining popularity across New Zealand and choral singing has been shown to improve quality of life, loudness, voice strength and intonation in people with Parkinson’s. Choral singing is available through your Parkinson’s New Zealand branch or division, your local DHB, some University programmes and neurological or community choirs.
FACT SHEET – CONTINUED FROM PREVIOUS PAGE
WHO CAN HELP?
For some people with Parkinson’s, medication for their condition, such as levodopa, may help improve the volume and clarity of their speech. For many people, however, medication has no effect on everyday speech5,6, so it’s important to get advice from a Speech Language Therapist on other ways of making your speech clearer.
Communication difficulties can have a major impact on the quality of life of people with Parkinson’s. There are many communication techniques and strategies that can make a real difference for people with Parkinson’s so make sure you get help.
TIPS TO IMPROVE COMMUNICATION
• Your GP or Neurologist • Your local Speech-Language Therapist through your District Health Board • A local private Speech-Language Therapist • The University of Auckland, University of Canterbury and Massey University all have speech-language therapy programmes and may offer individual and group therapy in their student clinics throughout the year.
Difficulties with communication can be upsetting and frustrating for a person with Parkinson’s and for those around them. A Speech-Language Therapist will work with you to come up with an individual plan for you and your family. There are some basic things you can do to make life a little easier.
• Communicate in a quiet environment without too much background noise. For example, turn the volume off on the TV or radio. • Get your listener’s attention before you start speaking – a person needs to be paying attention for them to understand your speech. • Be direct and use short sentences with predictable types of wording. For example, say, “Close the window, please” instead of “I wouldn’t mind if you would close the window.” • Don’t have important conversations when you are tired. • Avoid talking between rooms at home. • Make sure you are using gestures and facial expressions when possible. • Keep your volume up and your speech rate slow. Counting each word on your fingers may help you slow down your speech rate.
COMPUTERS AND APPS Sometimes, instead of speaking, you may find it easier to use other methods of communication. For example, if you have access to a computer, using the internet and email can be a useful way to stay in touch. If you use a smartphone, there are many apps that are being developed to help with communication difficulties. For example, DAF Professional (iOS/ Android) is an easy to use professional speech therapy app to help people with Parkinson’s slow their rate of speech so it sounds clearer to others.
• Your Parkinson’s Community Educator
Revised Dr A Miles, PhD & P Friary, BSLT Hons Acknowledging the original author Dr M McAuliffe, PhD Last reviewed: June 2017 Please do not interpret anything in this fact sheet as personal medical advice, always check any medical problem with your Doctor. Further information may be obtained from your Parkinson’s Community Educator.
REFERENCES 1. D. Standaert G., "Neurochemical changes in Parkinson's Disease," in Parkinson's Disease: Solvay Pharmaceuticals Conferences, E. Ronken and van Scharrenburg, G., J., M., Eds. Amsterdam, The Netherlands: IOS Press, 2002, pp. 17-28. 2. Gage, H and Storey, L (2004) Rehabilitation of Parkinson’s Disease : a systematic review of the available evidence. Clinical Rehabilitation, 18: 463-482. 3. Kalf JG, de Swart BJM, Bonnier M, Hofman M, Kanters J, Kocken J, Miltenburg M, Bloem BR, Munneke M. (2008) Guidelines for speechlanguage therapy in Parkinson’s Disease. Nijmegen, The Netherlands / Miami (FL), U.S.A. 4. Tjaden, K (2008) Speech and swallowing in Parkinson’s Disease, Top Geriatric Rehabilitation, 24 (2), 115-126. 5. van Hooren MR, Baijens LW, Voskuilen S, Oosterloo M, & Kremer B. (2014). Treatment effects for dysphagia in Parkinson's disease: a systematic review. Parkinsonism & Related Disorders, 20(8), 800-807. doi:10.1016/j. parkreldis.2014.03.026 6. Warnecke, T., Suttrupa, I., Schröder, J. B., Osadab, N., Oelenberga, S., Hamachera, C., . . . Dziewasa, R. (2016). Levodopa responsiveness of dysphagia in advanced Parkinson's Disease and reliability testing of the FEES Levodopa-test. Parkinsonism & Related Disorders, early on line doi:10.1016/j. parkreldis.2016.04.034
Lee Silverman Voice Treatment (LSVT LOUD) LSVT LOUD is an intensive four-week exercise programme for improving communication in people with Parkinson’s with a focus on increasing loudness of speech. LSVT services are generally offered in private practice in New Zealand. In some areas LSVT may be available through your local DHB or a University programme.
Inspired to raise funds
PARKINSON'S BAY OF PLENTY
JANINE READY (CENTRE)
PARKINSON'S SOUTH CANTERBURY
Throughout the year thousands of New Zealanders of all ages, shapes and sizes push themselves to meet the challenge of events such as the Round the Bays, 5kms and Triathlons. Some enter as individuals, others as teams and for others it is a school or corporate event.
STEPHEN GIBSON Stephen Gibson is an amazing fundraiser -he's helped raise funds to support many great causes in Dunedin. He recently Got Going to raise money and awareness for Parkinson's New Zealand. He took part in the 10km Stadium to Surf Charity Walk in Dunedin and raised over $775 for Parkinson’s New Zealand. Thank you Stephen!
Rotary groups have been wonderful partners of Parkinson’s this year. BAY OF PLENTY
PIP PARSONS We were thrilled when Pip Parsons contacted us to say she wanted to raise funds and awareness for Parkinson's by running the Hawke's Bay Half Marathon. This is very close to her heart. Her mum lives with Parkinson's. Pip has raised over $1,300.
Parkinson’s Bay of Plenty is the recipient of a $5,000 donation from the Papamoa Rotary Golf Tournament on Anzac Day. Our thanks to Parkinson’s Bay of Plenty committee member Frazier McCullough and Rotary for this generous contribution.
SWAR SADHANA SCHOOL OF INDIAN MUSIC AND DANCE
Parkinson’s Central Plateau was the benefactor of the Rotary Lakes Monster Christmas Raffle, receiving a whopping $5,800. Central Plateau received an additional $1,500 from Sunrise Rotary to help with the facilitation of support groups in Rotorua. We will also receive $500 per year for the next three years from Rotary West for our singing group which started 2 May.
Swar Sadhana School of Indian Music and Dance held a wonderful concert in Auckland on 20 May and donated the proceeds from the concert to Parkinson's New Zealand. Parkinson’s Auckland Community Educator Rachel Turner gave a short presentation at the event.
NOAH MCNEILL Noah McNeill, age 9, will hold a raffle on 7 July at Sacred Heart Primary School in Petone to raise funds and awareness for Parkinson’s. A big thank you to Noah and to the Lower Hutt and Petone businesses that have supported Noah’s raffle.
CARAT NZ The team at Carat NZ is raising money for Parkinson’s New Zealand inspired by their industry colleague and friend Andy McDowell . They will run the Auckland Tough Guy and Gal 12km Mudfest on 2 July. If you have also been inspired by Andy’s many contributions to the Parkinson’s community, please donate to the Carat NZ page on Givealittle.
TULIP BULB FUNDRAISERS Parkinson’s branches and divisions around the country sold tulip bulbs to raise funds. Thank you very much to our volunteers who sold thousands of packets of tulip bulbs. New Zealand is going to be looking fabulous this spring!
If you are in Marlborough, watch out for this Community Educator's car. Thanks to the generosity of Redwood Trust and assistance from Wadsco Motorworld and Suzuki New Zealand Limited, our Community Educator has been able to lease this car for two years. This gift will help us continue our vital Community Educator Service in Marlborough.
SOUTH CANTERBURY We are so grateful to receive this $11,400 cheque for Parkinson's South Canterbury from this year's Central South Island Charity Bike Ride (CBR). Thank you to the riders, sponsors and everyone else who took part in this exceptional event. Pictured (left to right) are CBR President Shane Brookland, Sharleyne Diamond and Colin Marshall (Parkinson's South Canterbury). If you are thinking of "getting going" we would love you to choose Parkinson’s New Zealand as the charity for your event. We will be delighted to welcome you to Team Parkinson’s. Please contact us on 04 801 8850 or 0800 473 4636 or firstname.lastname@example.org.
NEWS FROM AROUND THE COUNTRY 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. We are looking forward to some inspiring and informative events in the coming months. Find out how you can get involved in your area by visiting www.parkinsons.org.nz.
PARKINSON'S NEW ZEALAND PRESIDENT KATHY JENKINS, DEIRDRE O'SULLIVAN AND THE WAREHOUSE'S COMMUNITY SUPPORT MANAGER SHARI FRENCH
KELVIN BAXTER AND PETER THEOBALD
RHONDA THORN, SIR RICHARD FAULL AND YVONNE GLASSBOROW
Chief Executive Deirdre O’Sullivan was very pleased to present the 2017 BACS NZ Good Business Eggs Awards. Congratulations to the award winners The Warehouse, Countdown Supermarkets and ANZ New Zealand. Thank you for giving back and investing in our communities. We’ll announce more news about outcomes from the night later this year.
Contact your local division or branch for details about upcoming events in your area.
SHARON MACKIE AND ANNA FRASER
Knighted for services to medical science, Sir Richard Faull, Director for the Centre for Brain Research, gives back to the Parkinson's community by sharing research findings at many seminars and events. Sir Richard is pictured above at the Brain Day event in Auckland with our Community Educators Rhonda Thorn (left) and Yvonne Glassborow (right).
WAIKATO Longstanding Parkinson’s Waikato committee member Kelvin Baxter recently was awarded Life Membership. Waikato Branch Acting Committee Chair Peter Theobald presented Kelvin with a certificate and life member badge. We are grateful for Kelvin’s many valuable contributions to Parkinson’s Waikato.
CANTERBURY Canterbury Community Educator Anna Fraser had the opportunity to attend an international Parkinson's Disease Conference organised by HPMI - the Hunter Postgraduate Medical Institute in Newcastle, NSW, Australia. Anna is pictured above (right) with Parkinson’s New Zealand Clinical Leader Sharon Mackie (left).
HAWKE’S BAY Parkinson’s Hawke’s Bay will hold a “Living with Parkinson’s” seminar on Thursday 28 September 2017. Dr Maurice Curtis will present on the latest Parkinson’s research findings and will be joined by senior neurological physiotherapist Gilly Davy and neurologist Dr Matthew Phillips. For more details and tickets please contact Lee Patrice on 06 844 9135 or email@example.com
KAPITI HOROWHENUA Our Kapiti Horowhenua division will hold a seminar on Tuesday 19 September. Speakers will include Dr Janet Turnbull and Dr David Bourke. For more details please contact Rachael Tong on 04 293 6927 or firstname.lastname@example.org
WELLINGTON Parkinson’s Wellington will hold a seminar in Lower Hutt on Monday 17 July. Auckland based neurologist Dr Barry Snow will be a guest speaker. Dr Snow is the lead investigator in the NTCELL clinical trial for Parkinson’s. Spaces are limited. For more information and to register please contact Joy Woollett on 04 564 1295 or email@example.com
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.
Published on Jul 28, 2017