The Parkinsonian June 2014 by Parkinson's New Zealand

JUNE 2014

VOL. 17 – NO.2

ISSN 1177-0635

Political Panel Discussion Wellington Members of Parliament Annette King and Peter Dunne were well received at the Parkinson’s New Zealand AGM in April when they shared Labour and United Future’s positions on relevant health and disability policies. There were also problems with an untrained workforce, which required proper training and a plan had to be developed. Ms King emphasised the importance of a long term strategy because “if you don’t know where you are going you will never get there.” Mr Dunne said there were both challenges and huge potential in the fact that more than 350 Non- Government Organisations worked in the health space and more use could be made of their capabilities and skills.

ANNETTE KING

He also remarked how DHBs needed to change their “don’t call us, we’ll call you” attitudes.

PETER DUNNE

We invited spokespeople from the Parliamentary political parties to participate in a panel discussion and Ms King and Mr Dunne acquitted themselves well on the day, going by the applause, and the energy and attentiveness of the audience. The Green Party’s Health Spokesperson Kevin Hague and New Zealand First Health Spokesperson Barbara Stewart, were unable to attend but sent written statements (see page 2 & 3). Ms King, who had attended the Kapiti Parkinson’s group AGM two weeks previously, provided an interesting insight into her personal relationship with Parkinson’s; she has a family member with Parkinson’s and another who is a neurosurgeon who has worked in Western Australia on Deep Brain Stimulation. She said she is aware of the support that is required for people with Parkinson’s and the importance of maintaining on-going friendships. Parkinson’s New Zealand Chief Executive, Deirdre O’Sullivan, asked the MPs about their parties’ positions regarding respite care in light of the discrepancies of availability and quality of these services across the country. Ms King said that it was a matter of looking at the fundamentals in health. The current government health targets were too narrow and the amount of funding available and the priorities of the sector were key issues.

The letters of expectation Ministers send to DHBs came in for some discussion, with Mr Dunne and Ms King agreeing the letters could be more explicit and that some DHBs were better than others at delivering what the Government required from them. Following a question about why an individualised patient care pilot in the Bay of Plenty was being swept under the carpet, Mr Dunne said he didn’t know the details of the pilot but structural issues could be a problem with all the different DHBs and balancing regional autonomy and the Government’s expectations. Ms King said she was not opposed to such pilots but remarked that while we were very good at having pilots in this country, we were really bad at evaluating them. The politicians disagreed on some aspects of individualised patient care, which Ms King said undermined a collective approach and was perhaps a way of reducing community mental health services. However, Mr Dunne said it was clear that community involvement was intended as part of the Government’s policy in this area. Another member talked about how it was so hard to find respite care in the Palmerston North area and a long discussion ensued about striking the balance between regional autonomy and national standards. Mr Dunne emphasised the need to not go back to centralised planning of health and Ms King stressed the need for national standards via service specifications. Whatever one’s viewpoint, more analysis of specific regional health needs was necessary; it was agreed, with the example of the high rate of Colon Cancer in Southland discussed. ARTICLE CONTINUED ON PAGE 2

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It was stated that New Zealand’s demographics meant our health system would come under even greater financial pressure over the next ten to twenty years and an insurance scheme which was like ACC in many ways was one possible solution. A number of anomalies associated with the carers of people with Parkinson’s financial entitlements came under fire from people in the audience and the MPs said their parties shared the concerns raised. Also, new challenges as well as opportunities came out of increased knowledge among the public of medical conditions and there no longer being the need to “dust off the old medical encyclopaedias,” but rather just get the latest information on line. Ms King commented that in some cases “a little knowledge can be a dangerous thing.” The reintroduction of holistic, preventative approaches to health policy was called for. Ms King mentioned, for instance, that the Healthy Eating, Healthy Action strategy (HE-HA) had been dumped by the present Government, despite New Zealand being the third fattest nation in the world. In another comment, Mr Dunne noted it was vital politicians listened to charities and took an interest in how they reacted to policies.

Toward the end of the session, Ms King said the Government’s chief science advisor, Sir Peter Gluckman, was adamant that scientific, evidence-based analysis was central to good policy making. A neurological desk at the Ministry of Health hadn’t transpired despite the idea having been supported by a former Minister of Health but Mr Dunne and Ms King said their parties would both consider it.

GREEN PARTY STATEMENT The Green Party want 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. The Green Party is committed to a New Zealand in which all people can access their full rights, 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 health care 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. This applies for people with Parkinson’s as much as anyone.

Access to new medicines and treatments We support the role of PHARMAC to negotiate the best deals for New Zealanders on new medicines. Their decision making must be done in consultation with people with Parkinson’s and their support people.

Access to respite care Carers need to have the right supports in place to look after themselves as well. That is why the Green Party is committed

to supporting carers through valuing their work and ensuring access to the right kind of respite care. We support increasing the options and flexibility for respite care so that each family is able to find the solution that suits them best. Part of this support is implementing improved pay, conditions and training for support staff and caregivers.

Access to disability aids and home help supports to help people stay in their homes The Green Party supports full access to disability aids and home help supports for all people living with Parkinson’s and their families so that people are able to have the equipment and support they need to live happily at home.

NEW ZEALAND FIRST STATEMENT Lack of Respite care and lack of equitable access around the country: Respite care is designed to provide short-term breaks for the carers of a disabled person, while also providing a positive, stimulating and worthwhile experience for the disabled person. New Zealand First believes it is fair and reasonable that all New Zealanders have access to all healthcare services.

Preparation for an aging population: New Zealand First has a number of policies that plan for the future of the eldercare sector and ensure that New Zealand is prepared for an ageing population. New Zealand First will: 1. Enforce national standards for rest homes and home care 2. Ensure adequate funding and direction is put into Alzheimer’s, dementia and osteoporosis research 3. Plan for the future of the eldercare sector and ensure that New Zealand is prepared to care for the elder generation 4. Ensure staff ratios in rest homes are set at appropriate levels for safety and care 5. Ensure staff receive ongoing training and professional development 6. Ensure pay parity between eldercare nurses and DHB employed nurses In addition, New Zealand First has a number of Members Bills currently in the ballot or awaiting reading in the House that benefit the older population and work toward a prevention health strategy rather than reactive. The SuperGold Health Check Bill would strengthen Primary Healthcare by giving SuperGold cardholders 3 free doctors’ visits every year. This programme only needs to prevent 1% of elderly from hospital admission to be fiscally neutral. The Affordable Healthcare Bill: This Bill will support the sustainability of the public health service by encouraging people to buy and maintain their health insurance. New Zealand’s private health sector is 17% compared to the OECD average of 28%, and Australia’s of 32%. ARTICLE CONTINUED ON PAGE 3

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This omnibus bill proposes;

We would commit to incrementally raising spending on health so that we have a properly funded and resourced public health service.

• Compulsory Health Insurance for parent reunion immigrants – first 10 years of residency • To abolish Fringe Benefit Tax on employer/employee health insurance • A 25% SuperGold Health Insurance Rebate The Government needs to provide an incentive for those wanting to contribute to their own healthcare as a way of ensuring private healthcare does not collapse putting extra strain on public health.

New Zealand First would conduct a review of the efficiency and efficacy of Pharmac’s operations and of the adequacy of pharmaceutical funding The Government increase of prescriptions to $5 is unrealistic. We would make sure prescription charges are affordable for all New Zealanders. New Zealand First would also provide funding toward orphan drugs for rare diseases.

Access to medicines: New Zealand First believes in equal and fair access for all health services, including medicines.

A WORD FROM THE CHIEF EXECUTIVE

Tena Koutou Katoa The Parkinson’s New Zealand Outward Bound course is over for another year and once again the feedback from those who attended has been very good. It is great to hear how empowered and inspired the group who made up Scott Watch are on their return from this adventure. There is more on this trip on page 11. With the election coming up it is important to know what the political parties are offering for people with Parkinson’s and others with long term health conditions. Parkinson’s New Zeland invited representatives from each of the political parties to come to our AGM to discuss their party’s policies. Labour’s Annette King and United Future’s Peter Dunne attended the AGM to discuss their policies and answer questions from the floor. We also invited the parties who could not attend to submit a statement for publishing in The Parkinsonian. On the front page we have a summary of the presentation given at the AGM. We also have statements from the Green Party and New Zealand First. I am pleased to see that improving options for respite care is a top priority for the Carers’ Strategy Action Plan (see page 6). Better availability of respite services is a real concern and both Ms King and Mr Dunne agreed that this was an area that needed to be focused on.

The World Parkinson Congress was so full of information that we couldn’t get it all in the December 2013 edition of The Parkinsonian. There was a very interesting session on the search for new ways of delivering drugs to provide better treatment of Parkinson’s. This is a topic I think you will find informative and a few of the treatments being developed and tested are outlined on page 9 & 10. All of the medical information we publish is checked by our Medical Advisory Panel. For many years Dr Jon Simcock has been a part of this panel. Dr Simcock has now retired from his role as a neurologist and decided to also retire from the Medical Advisory Panel. I want to thank him for his many years on this panel and wish him well for his retirement. Nga mihi nui Deirdre O’Sullivan

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 info@parkinsons.org.nz | Web www.parkinsons.org.nz www.facebook.com/parkinsonsnz & Twitter @Parkinsonsnz Follow us on Facebook

JUNE 2014

NEWS & RESEARCH BOXING TYPE EXERCISE CAN HELP PEOPLE WITH PARKINSON’S Rock Steady Boxing is a noncontact, intensive exercise routine that helps improve flexibility, range of motion, gait, posture and other daily living activities that are affected by Parkinson’s. Boxing is a bilateral exercise that encourages people with Parkinson’s to use their entire body at the same time, even if one side of their body has forced or stiff movements. In research at the Krannet School of Physical Therapy at the University of Indianapolis, associate professor Stephanie Combs-Miller has undertaken several small studies on the safety and effectiveness of the Rock Steady Boxing program for people with Parkinson’s. She reported at the World Parkinson Congress on a two year study that compares 39 Rock Steady Boxers to 26 other exercisers, all with Parkinson’s. After one year, the preliminary findings show that although all participants benefit from exercise, boxers demonstrated a significantly greater comfortable 10 metre walking speed compared to non-boxers. See Parkinson’s New Zealand’s website for a video of Rock Steady Boxing at the World Parkinson Congress. Source: www.philly.com

ACUPUNCTURE

Results of a study on the effectiveness of acupuncture on people with Parkinson’s has recently been published in Neurology the official journal of the American Academy of Neurology. In the study, doctors from the University of Arizona randomly assigned patients into one of two groups. The acupuncture group received electroacupuncture and the control group received sham acupuncture to rule out the placebo effect and other variables. Participants in both groups received one treatment per week for three weeks. Each treatment lasted 30 minutes. Objective measurements were taken from various positions and during many types of activities. Researchers found an overall improvement in balance by 31% in the acupuncture group. Gait speed increased by 10% and stride length increased by 5%. The control group showed no improvements. The researchers concluded that electroacupuncture is an effective therapy in improving certain aspects of balance and gait disorders in Parkinson’s. Source: www.healthcmi.com

SPEAK UP FOR PARKINSON’S Biofeedback in the form of real-time volume monitoring and video review is an effective means of helping people with Parkinson’s monitor and improve their speech. Speak up for Parkinson’s is a free application (self contained computer programme) that can be downloaded onto apple devices (iPhones and iPads) to help people with Parkinson’s improve their speech. This app pays special attention to the volume of the person’s voice. Users can select from either ‘words and phrases’ where they read out loud a series of random statements that the app presents for them to speak, or ‘reading and conversation’ where they can provide their own reading material or speak freely allowing a longer practice session.

Users record themselves speaking looking into their iPad or iPhone camera. The screen shows a volume metre with a defined ‘target zone’ which provides feedback to them on their speech volume. The user can also watch the recording of them speaking and see any closed mouth posture, articulatory undershooting and masked facial expressions which may be affecting their speech. Parkinson’s New Zealand would like to hear from any members who use this app on how useful they have found it when practicing their speech. Source: www.advanceweb.com

STATINS MAY DELAY ONSET OF PARKINSON’S A populations study undertaken by Dr Jou-Wei Lin, a cardiologist at the National Taiwan University Hospital, has found evidence that taking statins may lower the risk of developing Parkinson’s. Fat soluble statins are a medication taken to reduce the risk of stroke and heart attack by lowering cholesterol levels in the liver. These fat soluble statins are believed to cross the bloodbrain barrier, unlike water soluble statins. They may decrease inflammation and even modify dopamine pathways in the brain which are linked to Parkinson’s. Analysis of nearly 44,000 patients who were taking fat soluble statins found that people who stopped taking the medication were 58% more likely to develop Parkinson’s than those who kept taking the medication once their cholesterol levels had reduced to a healthy level. Prior studies had already shown that people taking water soluble statins developed Parkinson’s at about twice the rate as those taking fat soluble statins. Further clinical trials will be required into this link. There is no evidence that starting to take these drugs after the diagnosis of Parkinson’s would provide any benefit. However for people already taking fat soluble statins were also advised not to stop taking them. Source: www.webmd.com

ELECTRODE PLACEMENT AFFECTS DBS OUTCOMES Deep Brain Stimulation (DBS) is a treatment that uses mild electrical pulses to stimulate a precisely targeted area of the brain in people with Parkinson’s. It works by stunning the target area which blocks the abnormal nerve signals transmitted by areas in the brain that are not functioning properly. The treatment will target one of two areas of the brain, the Sub Thalamic Nucleus (STN) or, less commonly, the Globus Pallidus interna. DBS is only effective for a small percentage of people with Parkinson’s. Researchers from the Universitè Pierre et Marie Curie in France studied 262 patients who had undergone DBS. Of this group, 104 had received bilateral placement of the stimulation contacts, 26 in the zona incerta, 17 in the posterior-sensorimotor STN and 61 in the intermediate associative STN. When assessed one year after surgery, patients with bilateral stimulation of the posteriorsensorimotor-STN or intermediate-associative-STN have similar motor outcomes. However those with placement in the zona incerta have worse scores for motor disability, akinesia, rigidity and axial signs. Findings confirmed that stimulation of the STN, rather than surrounding structures, resulted in a better outcome.

THE PARKINSONIAN

Cognitive outcomes as a result of the surgery were also influenced by electrode placement. Anterior electrode placement was associated with better outcomes. 18% of patients experienced a decline in cognitive performance between baseline and one year after surgery. These patients had no further decline between one and two years post surgery suggesting it occurred as a result of the surgery treating a microlesion.

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The researchers also noted that a greater improvement was seen in patients selected according to a strict criteria than those using a less restrictive inclusion criteria. Those who were selected using a strict criteria obtain the best motor outcome with minimum side effects.

VIBRATIN G BOX N OW AVA IL ABLE

Source: www.news-medical.net

GOOGLE GLASS Google Glass is a wearable computer developed by Google. At first glance they look like normal glasses however they work like a hands-free smart phone and are linked to the internet. Information is displayed on the lens of the Glass which is voice activated. Newcastle University are testing how they might be used to support people with long-term conditions including a group of volunteers with Parkinson’s aged between 46–70 years. Working in conjunction with this group they are designing applications (self contained computer programmes) to use with Glass. The team are looking at how the features of Glass may assist people with Parkinson’s. One of the main benefits of using Glass is that it will provide prompts and cues without it being obvious to other people. Medication reminders are one way Glass can assist people with Parkinson’s to ensure they get the right medication on time. For people who produce excess saliva, Glass can give cues to remind them to swallow. Researchers and also looking at using the motion sensors in Glass to recognise when a person freezes and provide a visual cue to help the person unfreeze.

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Source: www.medicalxpress.com

MRI IMAGE DIAGNOSIS FOR PARKINSON’S A new test for Parkinson’s has been discovered. A team at Nottingham University, using high resolution magnetic resonance imaging (MRI) scan have pinpointed an easily recognisable sign of a healthy appearing substantia nigra which is lost in Parkinson’s. The image is referred to as the ‘swallow tail’. Researchers reviewed 114 high-resolution MRI scans and in 94% of cases made an accurate diagnosis of Parkinson’s based on this image. Source: www.medicalxpress.com

NEW SPOON FOR PEOPLE WITH PARKINSON’S Liftware is an electronic spoon that claims to help people with a tremor eat more easily. The spoon uses a microchip and sensors to detect the direction and force of a user’s tremor and moves in the opposite direction, cancelling out the tremor. The spoon is rechargeable and the spoon section detaches for cleaning. The liftware spoon costs USD$295 plus shipping. For more information and videos go to www.liftlabsdesign.com. Source: www.liftlabsdesign.com

JUNE 2014

CARERS CORNER

Carers’ Strategy Action Plan The 2014 Carers’ Strategy Action Plan sets out what the Government will be doing over the next five years to improve support for family, whanau and aiga carers. Ensuring there is support available so carers can take a break when they need one is a top priority. Helping carers balance caring with paid work and study is also a focus of this strategy. This strategy is building on the previous Action Plan that was launched in 2008. carers keep themselves fit, well and safe. The Accident Compensation Corporation will adapt the Guidelines for Moving and Handling People so it includes information on the specific needs of carers who help family members, friends or neighbours. The Ministry of Social Development will improve the accessibility of learning and well-being resources for carers. It will also identify ways to help whanau and aiga who would like to learn together. 3. Information and promotional resources for carers need to be accessible, user-friendly, culturally appropriate, and available online and face-to-face. The Ministry of Social Development will work with Carers New Zealand to develop the CarersAir web site and make sure that information, advice, and support for carers is accessible, relevant, timely, high quality, and translated into different languages. There will also be more information available at the places that carers typically visit. 6

It is estimated that in New Zealand almost one in ten people provide care to a family member, friend or neighbour living with an injury, disability, physical or mental health condition, or addiction. The Minister for Senior Citizens, Jo Goodhew says “the vision of the Carers’ Strategy is that New Zealand society values people who support others in their everyday living”. In the next 20 years the number of New Zealanders aged over 65 is expected to double. This will result in more people needing to be cared for. Ensuring support is available to carers, many of whom see their caring role as a normal part of life, and don’t identify themselves as carers is essential. There have been five objectives set to guide Government activities in supporting carers for the next five years. 1. The top priority for carers is to be ale to take a break when they need to. Respite options need to be flexible, carer-friendly, and available to all carers. The Ministry of Health ill develop a range of options to provide greater choice, control and flexibility of respite services. It will also support a carer matching service. The Ministry of Social Development will develop a resource about respite for carers that will include information about government funding options. 2. Carer health and well-being is a high priority. The Ministry of Health will develop practical learning resources to help

4. Pathways to paid employment for carers are important. Support for whanau, aiga, family and carers to balance their work, life and caring roles are important. Employers have a big impact on carers being able to manage paid work. The Ministry of Business, Innovation and Employment will strengthen promotion of flexible, supportive working arrangements for carers who want to take up paid employment. The Ministry of Social Development will work with Carers New Zealand and employer and employee groups to improve awareness among employers of carers’ workplace needs, and to improve recognition of their prior learning and experience. 5. Greater understanding and awareness is needed for carers’ roles. The Ministry of Social Development will work alongside Carers New Zealand to promote carer support services and make sure that information reaches more carers, especially those living in rural areas and across different cultures. In response to consultation feedback, the Ministry of Social Development will take the lead to better understand the needs of the fastest growing groups of carers – younger carers, older carers, and carers of older people. Greater understanding will make sure that information and learning is provided in the ways that suit these carers best.

To read the Strategy Action Plan in full you can download it from www.msd.govt.nz/carers-strategy. To order a paper copy email carers.strategy@msd.govt.nz or phone 0800 273 674.

THE PARKINSONIAN

FACT SHEET

Preparing for a Medical Appointment In order for you to get the most out of your doctor and specialist appointments, you may find it useful to complete this form over the week prior to the appointment so you don’t forget to mention concerns you have about your health. There might be changes you, your family or carers have noticed that you don’t think are connected to your Parkinson’s, however you should also note these down as they may be important. When talking to your doctor about any new or changed health concerns, they will need to know: • Location – what part of your body is affected? • Description – what does it feel or look like? What has changed? • Duration – how long has it been affecting you, when did you first notice it? Is it consistent or fluctuating? • Intensity – how bad is it? It is also a good idea to take notes about what the doctor tells you, or take along a friend or family member to write it down for you and remember what they said. Fill in this chart to help you explain to your doctor what you are concerned about. There is a diagram on the other side that may assist you in identifying things you wish to discuss with your doctor.

ISSUE

CHANGES, CONCERNS AND QUESTIONS

General Health and Stress Physical Symptoms 7 Psychological Symptoms Other Concerns Your doctor or specialist may want to know when you are taking your medication and what medications you are on. Complete this table with how many of each pill you take at each time (you can write in the actual time you take your medication under the suggested times). Make sure you list any herbal, homeopathic or over the counter medications you are on and any vitamin or supplements you take in the ‘other section’.

MEDICATION AND DOSAGE eg: Amantadine 100mg

TIME MEDICATION TAKEN

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Common symptoms of Parkinson’s Parkinson’s is a highly variable condition and everyone has a different set of symptoms. Below are some of the common symptoms of Parkinson’s and the side effects of medications. This is a guide to help you identify your symptoms so you can discuss them with your doctor.

Lightheadedness

Change in sleep pattern Insomnia/excessive daytime sleepiness Vivid dreams/nightmares Difficulty moving during sleep

Sadness/depression Caregiver stress Loss of pleasure from activities Anxiety Euphoria Dry eyes Gambling Change in vision

Memory problems Confusion Hallucinations Delusions Dry or oily scalp or face

Loss of sense of smell Slurred speech Drooling

Loss of facial expression Skin redness Rash Mole changes Itching

Swallowing problems Weak voice 8

Stooped posture Nausea Constipation Diarrhea Weight loss Weight gain

Tremor Slowness Stiffness

Change in handwriting Loss of dexterity

Impotence/loss of orgasm Decreased or increased sex drive Loss of control of urine

Problems walking Swelling

OTHER SYMPTOMS: • Pain • Mediation wears off suddenly • Extra Squirming movements • Twisting postures • Hesitation or freezing • Impulse control (e.g; new or increased gambling, shopping, eating or inappropriate sexual thoughts or actions)

THE PARKINSONIAN

WORLD PARKINSON CONGRESS

New methods for delivering Parkinson’s medications At the World Parkinson Congress (WPC) in Montreal late last year, there was an interesting session on the search for new delivery methods for drugs. Peter LeWitt, professor of Neurology at the Henry Ford Hospital in Michigan spoke during this presentation about new drug delivery systems. The Parkinsonian has summarised part of this presentation. A full webcast of this session is available on the WPC website. Peter LeWitt started the presentation by saying that highest on the list of Parkinson’s drugs to be improved upon is levodopa. He went on to explain how swallowed pills pass through the system to get into the brain and also talked about some of the problems with current methods of delivering drug therapy for Parkinson’s. There is an optimal level of any drug that needs to be delivered to the brain to treat Parkinson’s, and getting this level right can be problematic. ‘Off’ periods and dyskinesia develop over time in people with Parkinson’s and controlling or limiting these symptoms can be done with medication. If the amount of a drug is too low the person will experience longer ‘off’ periods. Too high a dose will lead to the person experiencing dyskinesia. So he said the challenge is to deliver the drugs to the brain in a way that provides the optimal therapeutic window – the time that the person is ‘on’ but without experiencing troublesome dyskinesia. For years the vast majority of medications for Parkinson’s have come in the form of pills that are swallowed. There are many challenges in this method of drug delivery. The person may have problems swallowing pills. As the pill is broken down in the stomach the amount of the drug that is released may be affected by erratic gastric emptying. The amount and type of food a person has eaten around the time the medication is taken may speed up or slow down the time the pill remains in the stomach. Improvements in drug delivery are intended to not only produce a better pharmacological effect but also make treatment more convenient which should result in there being less chance of the person forgetting to take the medication. In the case of levodopa, once the pill has been swallowed it is absorbed into the bloodstream through a process that occurs in the gastro intestine areas of the duodenum and proximal jejunum (see diagram).

The area in the intestine that can absorb levodopa only accounts for about 45cm of the small intestine’s approximately 6 metre length. Once the drug gets into the circulation system it is largely cleared with more of the drug absorbed into skeletal muscles than into the brain. Before getting to the brain the drug passes through the stomach, intestine, liver, heart, lungs, heart (again) and then to the brain. All of these systems of the body create difficulty in getting the levodopa into the brain. Once the dopamine gets to the brain it is turned into a neurotransmitter which does the signalling. However, even when it does get to the brain and is turned into dopamine, this only lasts about 15 minutes and it may also be slowed down by enzymes. So finding ways to overcome all these challenges in getting the right level of medication to the brain is the challenge of researchers today. Dr Lewitt went on to talk about some of the new methods of delivering Parkinson’s medications that are being developed and tested. He cautioned that in some cases these are unpublished, state of the art concepts that go beyond what would have been talked about even a year ago. Using levodopa as a prodrug is in the early stages of research to see if this is a practical solution to the problem of a lack of consistency in the absorption of levodopa. A prodrug is a precursor chemical compound of a drug. It is administered in an inactive or less than fully active form and is then converted into its active form through normal metabolic processes. In the studies underway, levodopa prodrug is linked to a nutritional carrier that allows it to be absorbed by a larger area of the small intestine and even parts of the large intestine. Results of a study published in Clinical Neuropharmacology in 2012, looked at how people who have a need for a more consistent effect from levodopa as they are susceptible to dyskinesia might benefit from the use of a prodrug form of levodopa. This study showed that there was improvement in ‘off’ time of people who were previously taking the optimal level of immediate release levodopa. The micro-tablet is like a cluster bomb of carbidopa-levodopa components with different release timings (immediate release, controlled release, etc). As a group, these medications create an improved treatment as the time the medication remains active in the system is improved. A study published in Lancet Neurology showed that this drug IPX066 ,also known as Rytary, showed there was an extension of the effects of the medication as the delivery of levodopa was more consistent.

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Patients in the study experienced less ‘off’ time and their ‘on’ time was improved. The improvement in ‘on’ time was not at the cost of more involuntary movements. Research was continuing on this therapy.

good ‘on’ time where the patient doesn’t have dyskinesia or any dyskinesia they have is considered ‘non-troublesome’. They also show less ‘on’ time with dyskinesia than patients taking conventional medication.

Gastric-retentive formulations are products that remain in the stomach and slowly release their contents. The Accordion Pill also uses multiple drugs and multiple versions of the drug with different release timings. These drugs are placed within layered polymer sheets. These sheets enable controlled gastric release of the medications they contain as they leach from the polymer surfaces. The polymer sheet is folded up like an accordion (hence the name) and is contained in a capsule that dissolves quickly in the stomach releasing the folded polymer sheet. The sheet opens up in the stomach and, as it is larger than the stomach’s escape valve, does not pass through, but remains in the stomach releasing the drugs. The polymer sheets are biodegradable and last for about 12 hours before becoming small enough to pass through the stomach. The accordion pill only needs to be taken twice a day. Although this delivery method is a work in progress, early results show a reduction in ‘off’ times and an increase in

Microparticle inhalers are being researched to get levodopa absorbed as an immediate or ‘rescue’ therapy. The microparticles are absorbed through the lungs and ensure an accurate and highly efficient dose is administered. This medication is intended to bridge the gap between oral doses of levodopa and provide relief from ‘off’ periods. Studies so far have found this method of delivery is user friendly and produces a precise dose that doesn’t require coordinated breathing effort when the medication is administered. These methods of drug administration are just some of the methods currently being researched. It is hoped that with improved methods of administration of currently available drugs, good drugs can become better when they are engineered for optimal delivery.

The full webcast can be viewed at www.worldpdcongress.com

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GET GOING

2014 Outward Bound Course On Sunday 27 April, nine people with Parkinson’s, three family members and two Parkinson’s New Zealand staff embarked on an adventure - the 2014 Parkinson’s New Zealand Outward Bound course. On arrival at Outward Bound the group were given a few minutes to put their gear in the bunk house, and then it was off for a run, push ups in the marshes, and then a swim fully clothed to wash off the mud. The course continued at this pace for the next six days, and soon the group had adopted the battle cry of “there is more in you”. The high ropes course on the second day was an opportunity for everyone to challenge themselves, regardless of whether they had Parkinson’s. Walking like a monkey along a single strand wire 10 metres above the ground while being supported and encouraged by the rest of the group helped build this diverse group into a tight knit team. Over the next few days they rowed a heavy cutter, tramped part of the Queen Charlotte track, learnt to use kayaks in the surf, slept out under the stars, went on runs and swims and performed a skit. There was also plenty of time to spend in this idyllic place to quietly reflect on the experience.

life had changed. They had stepped out of their comfort zone and understood that having Parkinson’s was not going to be a barrier. Parkinson’s New Zealand has spaces on the 2015 Outward Bound course and encourages anyone interested in going to get in early and put their name on the list to attend. The course is open to people diagnosed before the age of 60 years and currently aged under 65. Participants fundraise some of the course fee, the rest was sponsored by Douglas Pharmaceuticals. Parkinson’s New Zealand wishes to thank:

At the end of the course the group left Outward Bound feeling tired but empowered, inspired and in most cases feeling like their

If you or someone you know would like to raise funds for Parkinson’s New Zealand, please contact us on 04 472 2796 or 0800 473 4636 or getgoing@parkinsons.org.nz. The possibility of events you could undertake are endless and we are always here to help you with your fundraising efforts.

JUNE 2014

NEWS FROM AROUND THE COUNTRY

OTAGO: KEEP DUNEDIN BEAUITFUL AWARD

WAIRARAPA: DAY OUT FOR WAIRARAPA DIVISION

Z’S GOOD IN THE HOOD A number of Parkinson’s divisions have recently received funding from the Z petrol station’s Good in the Hood promotion. Divisions have been one of four charities featured at a petrol station. People buying petrol are given a token to ‘vote’ for their favourite charity. The four charities then get a proportional share of $5,000 depending on how many votes were cast for them.

OTAGO During awareness week the Otago division held the Woodhaugh Walk. As part of the walk the participants picked up rubbish as they went. The division has now been recognised by the Dunedin City Council for this work and awarded a ‘Keep Dunedin Beautiful’ certificate. 12

AUCKLAND Parkinson’s Auckland held a public lecture to celebrate World Parkinson’s Day in April. Dr Barry Snow spoke about the life of James Parkinson who first described Parkinson’s and how he had many other medical and surgical interests, was a political writer and activist and also had a great interest in geology and palaeontology. Dr Snow went on to talk about how levodopa had been the ‘miracle’ of Parkinson’s treatment and how research

was on going. He also talked about the research he is involved in using pig cells and how regular exercise was important.

CENTRAL PLATEAU Parkinson’s Central Plateau raised just over $300 selling home made cakes, jams, jellies, pickles and fresh produce provided by members. The night market doesn’t charge charities to hold a stall so all proceeds from the sale go directly to the organisation.

WAIRARAPA A day trip to Somes/Matiu Island in Wellington Harbour was enjoyed by a group of about 17 people from the Wairarapa Division. They were very fortunate to have a lovely sunny day so the ferry ride to and from the Island was calm. Two of the members who were along on the trip acted as very knowledgeable tour guides having lived on the Island for 20 years when it was run by the Ministry of Agriculture and Fisheries. Somes/Matui Island is now run by the Department of Conservation. The group were pleased to get to see a tuatara, although it was a little shy and hiding under a log. They also saw the giant Wetas that now live on the Island. The track around the island is about 2km long so there was plenty of walking. The group enjoyed a picnic lunch.

UPBEAT Weekend August 29 – 31, Napier Registrations are now open for the 2014 UPBEAT weekend in August. Hosted by the Hawke’s Bay Division the event will be held at the Kennedy Park Resort in Napier. Presentations during the weekend will include advice on nutrition, travelling with Parkinson’s, and an update on research into Parkinson’s. 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 per person including accommodation or $70 per person without accommodation.

For more information email UPBEAT@parkinsons.org.nz or phone 0800 473 463.

Please do not interpret anything in this magazine as medical advice. Always check with your doctor. The appearance of any article or other material in this publication does not imply the agreement of Parkinson’s New Zealand with the opinions expressed therein.

THE PARKINSONIAN