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ISSN 1177-0635

The Parkinsonian The Quarterly Magazine of Parkinson’s New Zealand December 2011

Vol: 14, No. 4

AWARENESS WEEK Awareness Week ran from 1—7 November with events around the country. Members and supporters were out on the streets, in businesses and supermarkets around New Zealand raising awareness and much needed funds for Parkinson’s.

“Paws for Parkinson’s” collectors, at the Wellington Railway Station, Minnie and her brother Hugo are ‘float like a butterfly’ and ‘sting like a bee’ in honour of Muhammad Ali.

Minister Peter Dunne and Volunteer Laura Carrig collecting on Lambton Quay, Wellington.

Sarah Elemam, Rebekah Pitt, and Claire Harris from Westpac Cuba Street, Wellington get behind Awareness Week.

MS & Parkinson’s West Coast committee member June Campbell on a raffle table at The Warehouse in Greymouth.

Wellington Division Chairman Dorothy Ricketts (right) and Vice Chairman Pamela Cook fundraising at New World Lower Hutt.

Bev Simmonds, Northland Upbeat Coordinator outside a window display, Whitcoulls, Strand Arcade, Whangarei. The window display was coordinated by member Alison Toth.

www.parkinsons.org.nz

Hannah Carnaby and Lynn Johnson, Telecom Place, Auckland. As well as organising the lunchtime collection (with cupcakes), Lynn got her employer, through the Telecom Foundation, onboard to support Awareness Week.


A WORD FROM THE CHIEF EXECUTIVE TENA KOUTOU KATOA Welcome to the December issue of The Parkinsonian. This issue includes a lot of colourful photos from Awareness Week, 1 – 7 November 2011 on pages 1, 4 and 5. Awareness Week is a major event for us and all our Divisions with seminars, walks, displays, events, raffles and collections around the country. It is great to see and hear about what happened. A huge thank you to everyone who volunteered, donated or contributed in numerous ways to making this year’s week such a success. I’d particularly like to thank the members who shared their stories about living with Parkinson’s in newspapers around New Zealand. Together you really illustrated our theme: ‘The Many Faces of Parkinson’s’. Two of our articles this month, on Seeing a Geriatrician and The Quality of Home-Based Support Services for Older People, will be of particular interest to our older members. I also want to draw our younger members’ attention to the item on page 5, announcing our next UPBEAT Weekend. This is being held in Auckland in March. I’d like to encourage anyone eligible (diagnosed before the age of 60 and currently under 65) to think about attending. The weekend is an opportunity to meet other people affected by early onset Parkinson’s, to share ideas

and support and to develop your knowledge of Parkinson’s. It will also be a lot of fun. In our News and Research section this month we highlight the work of two young New Zealand researchers working on Parkinson’s. We often think that being down-under and far removed from the rest of the world, the exciting and ground-breaking research happens elsewhere. So it is good to read about New Zealand scientists using the latest techniques and making real discoveries. I have been so grateful for the response to our request for financial assistance towards the work of Society in the last issue. Thank you to all the generous people who have helped us. We are asking for your help again this month as our need is on-going. If you didn’t get a chance to make a contribution last time, we hope you will consider making a Christmas gift that will ensure that people with Parkinson’s can continue to get the help they need. As another year draws to a close, I hope you are all looking forward to summer and a relaxing festive season. Thank you for your support throughout 2011 and best wishes for a happy Christmas and New Year from all of us at Parkinson’s New Zealand. Kind regards

Deirdre O’Sullivan

CONGRATULATIONS Congratulations to our National Office Chief Executive, Deirdre O’Sullivan on the arrival of her baby girl Tui. Deirdre will be taking a few months off work and will be back in 2012.

AGM NOTICE The 2012 Parkinsonism Society of New Zealand will be held in Wellington 27&28 April 2012.

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The Parkinsonian

December 2011


NEWS & RESEARCH Optogenetics research into Parkinson’s at University of Otago University of Otago Brain Health Research Centre researcher Louise Parr-Brownlie is using a cuttingedge technology called optogenetics to investigate Parkinson’s. In the first study of its kind in New Zealand, her research is using the technique to investigate and control brain activity in an animal model of Parkinson’s. Optogenetics is a complex but exciting new method in neuroscience. Researchers use it to examine brain activity at a level of precision not previously available. Louise and her team are using it to better understand a part of the brain known as the motor thalamus and how its activity is affected by Parkinson’s. The motor thalamus is a critical intersection for the passage of motor information in the brain. Optogenetics combines genetic engineering and optics (the branch of physics which involves the behaviour and properties of light) and involves genetically manipulating brain cells to make them sensitive to light. Optical equipment is then used to both stimulate the cells and record their activity.

Movement disorders on YouTube – caveat spectator Dozens of videos on YouTube (the video-sharing website) show people who believe they have movement disorders, such as Parkinson’s, demonstrating and talking about their symptoms. A group of neurologists recently reviewed the most frequently watched YouTube videos about movement disorders and found the people in the videos often do not have a movement disorder. Seven neurologists from different countries and medical institutions searched YouTube using six keywords including ‘dystonia’, ‘Parkinonism’ and ‘tremor’ and examined a selection of the most viewed clips. Of the 29 videos showing people with movement disorders, the neurologists agreed that the majority (66%) were

December 2011

actually showing ‘psychogenic’ disorders (abnormal movement originating from a psychological condition or mental state rather than a condition with a physical cause). Over half of these had accompanying comments on the site recommended specific treatments, many of them inappropriate. The neurologists warn that for patients with a movement disorder, the information available on YouTube may be misleading and may provide an inaccurate impression of the disorder and its treatment.

Parkinson’s research at the New Zealand Human Brain Bank Dr Maurice Curtis at the Centre for Brain Research, University of Auckland leads a team that researches how the brain produces new cells and how those cells move to areas where they are needed. They are particularly interested in finding out how the cells migrate in the part of the brain involved in the sense of smell (the olfactory bulb). This is an area where cell migration is particularly active. In 2012 one of their major focuses will be on Parkinson’s as they think the proteins involved in controlling migration are disrupted in some way in Parkinson’s. The research will use material from the Human Brain Bank, which includes tissue from people with Parkinson’s. Dr Curtis says, “I hope that in a year’s time we could make some meaningful statements about what controls cell migration in the olfactory bulb and tract in Parkinson’s.”

US FDA unconvinced on benefit of rasagiline (Azilect) An Advisory Committee to the Food and Drug Administration (FDA) voted against approving a submission by manufacturer Teva Pharmaceuticals requesting permission to change the way that they describe the benefits of their drug Azilect (rasagiline). Azilect is currently approved to treat the symptoms of Parkinson’s;

The Parkinsonian

however, Teva had requested approval to be able to also say that the drug “slows clinical progression of Parkinson’s.” The Committee of outside experts voted 17-0 against recommending approval for that use, saying the company’s clinical study results were not convincing. Much of the panel discussion revolved around the limitations of Teva’s trial design and the difficulty of distinguishing between improved symptoms and actually slowing the disease itself. Based on the vote of the advisory group, it is unlikely FDA will approve the request. In a joint statement, six US Parkinson’s organisations agreed it would be premature to approve rasagiline as disease-modifying. Rasagiline is a monoamine oxidase inhibitor (MAO) and works by blocking the breakdown of dopamine. It is can taken on its own or in addition to levodopa. It is not currently prescribed in New Zealand.

Speech therapy: How to yell like a bat A recent study looking at how the brain controls the voice in bats might help researchers better understand the speech difficulties associated with Parkinson’s. Bats are apparently, after humans, the loudest and most vocal animals on the planet and have a lot of control over the sound and volume of their voices. Researchers gave the bats a chemical that targets the dopamine-producing cells of the substantia nigra (the same cells that are affected in Parkinson’s) and found that the bats lost their ability to raise their voices and to adjust their tiny chirping sounds. The researchers hope that by learning how changes in brain dopamine levels affect voice control in bats, they will gain insights into how the system works, and is affected by Parkinson’s in humans. Sources: Headlines; Scientific American; medscape.com; National Parkinson Foundation; www.futurity.org; New England Journal of Medicine

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AWARENESS WEEK | EVENTS FROM AROUND THE COUNTRY Northland Northland Division once again kick started their Awareness Week Campaign with a Garden Ramble around one of the new subdivisions in Onerahi, Whangarei, on 29 October. Many thanks to Elizabeth Swift and her neighbours for making their gardens available.

Auckland The Auckland division spent time raising awareness of Parkinson’s and the work of the Society by attending various events throughout the city. These included an NGO Open Day hosted by Waitemata DHB and a talk at Hillsborough Heights Retirement Village.

Taranaki Taranaki held an ‘Information Evening’ on 2 November. The evening was run as an informal Q&A forum and aimed at family members, co-workers and anyone who assists or lives with Parkinson’s. As well as field officers and other professionals, the speakers included two daughters of a person with Parkinson’s who shared their experiences. The event was well-attended and people found the evening useful and went home better informed about how Parkinson’s can impact on everyone.

Marlborough The division sold raffles at the local supermarkets and The Warehouse. They had a good week selling and gave out lots of flyers informing everyone about Parkinson’s.

Canterbury The second annual Footloose Fun Walk was held on Sunday 6 November in North Hagley Park. Around 95 people either walked the 2km track or chose to complete the 5km one. The more energetic rounded the park twice for a 10km run. After the event participants could enjoy a coffee; sausages from

MARLBOROUGH: Committee member Sandra Moss selling raffle tickets.

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NORTHLAND: Guests sharing a cup of tea on the Ramble.

WESTCOAST: Display stand Greymouth ASB.

the BBQ while the younger children used up more of their energy on the bouncy castle. It was a great family day. The following week, the division held an education session with Professor Tim Anderson giving an overview of Parkinson’s, its causes and genetics which was attended by almost 100 people.

South Canterbury The division had a number of Awareness Week displays around town, in the Disability Shop, the foyer at Community House where their office is, in the hospital foyer and at the local library.

West Coast West Coast had a successful Awareness Week with great coverage in the local papers. They ran a raffle, a Trade Me auction and set up a display stand at the local ASB. They also began their Annual Parkinson’s Wool Drive. This is run by retired farmers and members Jean and Russell Adams.

Otago

Otago’s main Awareness Week event was their Walk 4 Parkinson’s on 6 November. Luckily the weather was fine and about 50 members and family members walked different distance walks around the lovely streets of St Clair – the gardens were a picture. Each walker was given a map; on the back was some history and points of interest on the streets they were walking. There were some fun CANTERBURY: prizes for the walkers Young supporters running and Nordic Walker – then afternoon tea. at Canterbury Fun Walk. It was a lovely day.

The Parkinsonian

December 2011


AWARENESS WEEK | THE MANY FACES OF PARKINSONS

Christine and MP Murray Rose

Alix Cooper and Ruth Sutherland

John Hannay

Fran Allcock

In keeping with the “Many Faces of Parkinson’s” theme, members around the country shared their stories of living with Parkinson’s.

Former MP Murray Rose (pictured with his wife Christine on their farm in Waitahuna) told the Otago Daily Times that “Parkinson’s not the worst”.

Our Clinical Leader Lea-Anne Morgan was profiled by the Dominion Post and talked about her job leading our team of Field Officers, which she described as “Looking after the unsung heroes who make a big difference”.

John Hannay from Blenheim spoke to the Marlborough Express about how he doesn’t let Parkinson’s stand in the way of his love of gardening. The Wairarapa Times-Age interviewed committee member Ruth Sutherland (pictured with co-ordinator Alix Cooper) about how her “Mission is to get on with life”. Fran Allcock discussed the “Need to raise awareness of Parkinson’s” with the Waikato Times.

UPBEAT WEEKEND 23-25 March 2012, Waipuna Lodge, Auckland TOPICS TO BE COVERED INCLUDE: Medication - Treatments & Developments; Dealing with Grief; Complementary Therapies; and Useful Gadgets and Tools.

A collection of Awareness Week news stories from around the New Zealand can be found on our website http://www.parkinsons.org.nz/publications/real-lifestories/news-stories/awareness-week-2011-news-stories/

This is a great opportunity for people with earlyonset Parkinson’s to learn about the condition and, more importantly, to meet other people. The best thing about the UPBEAT Weekend was just being around people who understood. It was so refreshing not to be looked at funny, not to have to explain about Parkinson’s or what‘s going on with me. It was also great for my wife to be able to talk to other partners who knew what she was experiencing. I know a lot of people get that from Support Group meetings but we are so much younger than most members, so it was really good to be around others closer to our age. We both learnt a lot, and made some new friends. AJ, Auckland UPBEAT member UPBEAT is the special interest group for people with early-onset Parkinson’s (diagnosed before the age of 60, currently under 65 years). If you would like to know more about attending the UPBEAT Weekend or would like to register your interest please contact us on 0800 473 4636 or email: info@parkinsons.org.nz

December 2011

The Parkinsonian

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POSTURAL HYPOTENSION

People with Parkinson’s can experience problems with low blood pressure (hypotension) as a result of the symptoms of Parkinson’s and as a side effect of some of the drugs used to treat the condition. The most common type of hypotension experienced with Parkinson’s is postural hypotension (also known as orthostatic hypotension), which occurs with a change of posture such as moving from lying to standing or from sitting to standing. If you feel dizzy or light-headed when you stand up and the feeling doesn’t pass quickly, you may have postural hypotension. While it may be unpleasant and alarming, postural hypotension does not normally cause major problems. It can however put you at risk of fainting, losing balance, falling, and being injured.

You may also experience hypotension after a meal, because more blood is needed by the digestive system, or during exercise, when more blood is needed by the exercising muscles. Heat, including hot baths or overheated rooms, increases circulation to the fingers and toes and can also lead to symptoms.

Symptoms

Dehydration, changes in breathing pattern due to anxiety, fever and drinking alcohol, are also know to cause or worsen postural hypotension.

Symptoms are variable but predictable. They may include:

What can you do about it?

• Feeling dizzy and light headed • Changes in vision such as blurred, tunnel, greying or blacking vision • Angina-like pain (sharp, squeezing or burning pain) in the chest • Weakness • Fatigue

In many cases postural hypotension can be avoided or controlled by recognising your symptoms, being aware of what makes them worse, then taking steps to reduce and avoid them.

• Feeling muddled or confused

What causes it? Normally when you stand up, blood will pool in the legs and abdominal cavity lowering your blood pressure. The body compensates for this by an increase in the heart rate and constricting the blood vessels (vasoconstriction). If these adaptive changes are slow to occur or do not occur, blood pressure will fall and you will feel dizzy or may even faint. The adaptive mechanisms are impaired in Parkinson’s and both levodopa and dopamine agonists can lead to impaired vasoconstriction. Other medications, such as antidepressants and blood pressure-lowering pills to treat high-blood pressure, may also contribute. Symptoms are most likely to happen when there is increased demand on the circulating blood. Your symptoms may be worse when standing up, making a quick change of position, or if you have been in the same position for a while.This may be particularly noticeable when you first rise in the morning after you have been lying flat for several hours.

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If you are experiencing postural hypotension discuss your symptoms with your doctor. As the drugs used to treat Parkinson’s are known to cause the condition, it may mean that you need to have your medications reviewed. They can also advise you on other ways to manage your symptoms. If they are severe, drug treatment is available.

These include: • Take time to alter your position when rising from a chair to standing position. Once you stand, do not walk away from the chair straight away. Wait until you feel steady. • When getting out of bed, sit for a while with your feet dangling on the floor before rising fully. • If bending or reaching, do so slowly holding on to something if you need to. • Do not sit in the sun, or any overheated environment for too long. Try to curtail unnecessary activity when it is hot, and keep hydrated with extra fluids. • Eat small, frequent meals, drink at least eight to ten cups of fluid per day, and avoid alcohol. • An increase in dietary salt may also be beneficial, but discuss this with your doctor first as high sodium can lead to hypertension (high blood pressure).

The Parkinsonian

December 2011


POSTURAL HYPOTENSION

• Sit down to dress or when doing household tasks such as ironing. • Exercise gently and regularly — and avoid long periods of inactivity. • Some people find that wearing support stockings to stimulate the circulation can be helpful. You may also want to make some adjustments to your environment. Raising the head of the bed can help with low blood pressure when rising from bed. An occupational therapist can advise you on this and other aids.

Remember that if you feel dizzy or faint, sit (preferably with your legs raised) or lie down immediately until the feeling passes. If your symptoms are severe, discuss them further with your doctor. Sources: Low Blood Pressure and Parkinson’s (Parkinson’s UK); Orthostatic Hypotension (Low Blood Pressure) and Parkinson’s (Parkinson’s Disease Foundation).

BLOOD PRESSURE Blood pressure refers to the pressure in the circulatory system of the body, specifically the pressure exerted by circulating blood upon the walls of blood vessels. Blood pressure readings are usually given as two numbers, 130/80 for example, and measured in millimetres of mercury (mm hg). The first number, e.g.130, is the measure of pressure that the blood exerts on vessels whilst the heart is beating (systolic blood pressure). The second number, e.g.80, measures the blood pressure when the heart is relaxed (diastolic blood pressure). World Health Organisation (WHO) guidelines recommend that blood pressure should ideally be around 130/80 mm hg. However, a person’s blood pressure can vary during the course of a day and there can also be great variations in blood pressure from one person to the next. What is ‘low blood pressure’ to one person may be normal for another. This means that the change in blood pressure can be more important than the actual blood pressure reading. Get your doctor to measure your blood pressure both when you are sitting and standing.

December 2011

The Parkinsonian

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GET GOING Linda Bennett from Christchurch took part in a 10km run at the South Island Sports Festival in Ashburton on 6 November to raise funds for Parkinson’s New Zealand. Linda chose to support Parkinson’s because it is a charity close to her heart. “My Dad has Parkinson’s. He used to be a runner himself, running a marathon and a lot of long distance races, so hopefully completing this will make him proud, as well as raise money for a wonderful organisation.” In September, she signed up to Fundraiseonline to gather sponsorship for her run and by race day had exceeded her fundraising goal and raised over $2,000 for Parkinson’s. Fundraising was not the only success Linda had. Despite a very hot day in Ashburton and a hard slog, Linda had a good race. “Running 10km is not something I ever expected to want, or be able, to do! I came in 4th in my field of 15, 15th overall out of 38, and 8th out of 29 women, so I was happy with that.” “I’ve been really humbled by people’s generosity, and thrilled to be able to give something back to Parkinson’s New Zealand who do so much for people like my Dad. I’d encourage anyone else out there thinking about doing something like this to get out and do it, you may be surprised what you can achieve!” Congratulations Linda, and thank you to you and all your sponsors. If you’d like to challenge yourself or are taking part in an event we would love you to choose Parkinson’s New Zealand to benefit as your charity.

Linda and Denis Todd

For more information about our Getting Going for Parkinson’s please call 0800 473 4636 or email us at info@parkinsons.org.nz or.

THANK YOU

If you or your company can support the work we do for people living with Parkinson’s locally or nationally please get in touch with your local division or National Office.

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The Parkinsonian

December 2011


SEEING A GERIATRICIAN

Dr Kate Scott is a geriatrician based at Kenepuru Hospital. She gave a fascinating talk about the benefits of seeing a geriatrician at the Parkinson’s Wellington Seminar in September. The Parkinsonian caught up with her to learn more about the topic. A geriatrician is a specialist physician trained in the conditions that commonly affect older people (aged over 65 years old), especially those with complex conditions like Parkinson’s or multiple medical issues. They work as the clinical leaders of multidisciplinary teams and see people in both hospital and community settings. Dr Scott works as part of ORA (Older Adult, Rehabilitation and Allied Health) Community Services at Capital and Coast District Health Board (CCDHB). There are similar teams all around New Zealand, although they are organised slightly differently across different DHBs. “Variations on a theme”, is how Dr Scott describes it. Whatever they are called, they focus on assessment, treatment and rehabilitation services for older people. As well as working with the Community Team, Dr Scott works with inpatient rehabilitation at the hospital. There is usually an overlap between rehabilitation teams and older-people teams as rehabilitation is a core part of the service. These services are provided as part of the public health system at no cost to patients. When we describe the teams as multidisciplinary, this is truly the case. As well as the geriatrician, they include nurses, physiotherapists, occupational therapists, speech-language therapists, dieticians and social workers. The team also works with other specialists as needed. For people with Parkinson’s this may include their neurologist or the older people’s mental health team if they are experiencing problems with non-motor symptoms. We asked Dr Scott who gets referred to her team and how. “For people with Parkinson’s we typically see people either to help manage their Parkinson’s or because they have multiple issues that have become quite complicated. Most people are referred by their neurologist or GP.” Some patients may also get transferred to the team from another part of the hospital, following an illness or injury. People are generally referred to the community team for a specific issue. The team will work with them to achieve certain goals then discharge them back to their GP. These goals will be ones set by the patient, such as improving mobility or staying safely in their own home. “Obviously people can be referred back if needed but we don’t keep them on our books.” This applies only to the team though. If possible, the geriatrician will follow up and try to keep seeing the patient. “Unfortunately, our ability to do this is constrained by budget and staff considerations.” The first stage in a referral is an assessment. The process varies depending on the patient’s needs. They may first

December 2011

be seen by the geriatrician at the hospital if, for example, the issue is around their Parkinson’s medication. If the situation is more complicated the team may feel that the person would be best assessed in their usual living environment. Then they would be visited by one or two team members. “This is one of the benefits of seeing a geriatrician and their team, they still make house-calls.” The other major benefit is that the care a patient receives from a geriatrician will be more holistic than otherwise. This not just because a geriatrician works with a team who have different areas of practice, but also the approach they take. Dr Scott describes a recent visit to a patient who has advanced Parkinson’s and dementia. “Our assessment started at the front gate. Walking up the path we looked at how easy it was and asked ourselves if there were any obstacles that could affect mobility. How does the property look, is it manageable for an older couple? Things like that. Inside the house, as well as discussing the patient’s medical condition and well-being, I spoke to his wife about how she was coping with stress. I might also ask about a couple’s financial situation.” All this helps the team improve overall quality of life for people. “Because our patients are older and have conditions like Parkinson’s we can’t reverse their situation, but we can do simple little things to make things better for them.” Another service that older people’s health teams sometimes provide is specialist Parkinson’s clinics. These bring together the health professionals involved in caring for people with Parkinson’s, including Parkinson’s field officers, allowing patients to see “a whole bunch of health professionals at the same time”. This is not only convenient but if it is part of an annual review process, can allow for a “top-to-toe assessment of their condition”. Dr Scott’s team does not currently run such clinics but she is keen to develop them. “They are not just good for patients. There are benefits for staff in having a cohort of experts interested in a condition together. It can be a great learning opportunity. It can also be a good social opportunity for people with Parkinson’s to meet up.” It is not just in this context that Dr Scott favours working together. Overall, she says, “the system works best when we are liaising with others, particularly GPs and practice nurses. Both geriatricians and the primary care sector recognise a need to work together more on older people’s health. There is a big push to work on collaboration. People should be seeing more of it in the future.” Thank you to Dr Scott for taking the time to talk to us. We will be including articles about the role of other specialists working with people with Parkinson’s in future issues.

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CARERS CORNER

In July the Auditor-General released a performance audit report titled Home-Based Support Services For Older People. The Auditor-General undertakes performance audits in order to give independent assurance to Parliament and the public that public entities are: • carrying out their activities effectively, efficiently, appropriately; • using public funds and resources wisely; and • reporting their performance appropriately. The aim of the report was to look at how effectively the Ministry of Health and District Health Boards (DHBs) are ensuring older people get the care and support they need to remain living independently at home. The Auditor-General formed the view that generally services appear to be delivered adequately. However, she found a serious shortage of information in some areas, meaning that she could only give a qualified view. For example, a lack of performance information means that it is unclear whether the 70% increase in spending on home-based support services during the four years to 2008/2009 came about because more people are receiving services or because they are receiving better services. One area where information was particularly lacking was quality; the Auditor-General was unable to give positive assurances about the quality of services provided. This is in part because there are no

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mandatory standards for quality or level of services. There is a voluntary standard (NZS 8158:2003 Home and Community Support Sector Standard) but not all DHBs use it. The Auditor-General was also concerned about the number of complaints about home-based support services; there are very few. This could mean people receiving services are generally satisfied; however, she thought the level was so low that it raised questions about the robustness of the DHBs complaints process. As well as assessing the current state of services, the Auditor-General went on to consider their sustainability. She highlighted risks to services as they face both growing demand and more complex support needs and specifically highlighted those relating to the workforce. The report made five recommendations including improving the collection of information, strengthening the complaints system and that making the current voluntary standard mandatory be considered. Standards New Zealand is in the process of revising that standard. The public comments on the draft of the revised standard, Home and community support sector Standard DZ 8158 closed on 4 November. The revision of NZS 8158 reflects the considerable changes in home support services and how they are provided since it was published in 2003. The new standard has been developed in consultation with the Ministry of Health, ACC, and the New Zealand Home Health Association.

The Parkinsonian

December 2011


WE NEED YOUR HELP Parkinson’s New Zealand has been helping people living with Parkinson’s for nearly 30 years. In this time we have grown from a group of interested people sharing information and support for people with Parkinson’s, to the organisation you know today. We’re asking for your help to keep our services available to people with Parkinson’s. One of the most important areas of our work is our publications, including The Parkinsonian. Through our publications we provide information about managing and living with Parkinson’s; news about research and developments in the search for better treatments and a cure; and updates on the activities of the Parkinson’s community in New Zealand. The Parkinsonian. has a readership of over 10,000 and is highly valued by its readers. We know this because during our 2009 Review, 95% of you rated the magazine as a useful or extremely useful resource. You also tell us. After the most recent issue was mailed out a reader phoned the Office. She had just received her copy of The Parkinsonian. but noticed that it had been redirected from her old address. She told us that she just wanted to make sure we had her new address.

“I always enjoy reading the magazine and wouldn’t want to miss out on getting it”. A few weeks before that we had a man contact us to find out the price of subscribing to The Parkinsonian. We were very pleased to be able to tell him there was no cost. Parkinson’s New Zealand believes very strongly in providing our publications free of charge. We want them to be accessible to anyone and everyone who needs them. We know that Parkinson’s can be financially challenging, and while a small subscription for a magazine may not seem a lot to pay, when neither the person with Parkinson’s nor their carer can work anymore and the costs are piling up, it can be too much.

PLEASE MAKE A DONATION TODAY SO WE CAN KEEP OUR PUBLICATIONS AVAILABLE FREE OF CHARGE TO THOSE WHO NEED THEM. YES! I WANT TO MAKE A DONATION TODAY TO HELP PEOPLE WITH PARKINSON’S: Name: ______________________________________________________________________________________________ Address: ____________________________________________________________________________________________ Phone number: ___________________________________ Email: ____________________________________________ Here is my gift of: $500 could pay for producing a new fact sheet on Parkinson’s $100 could pay for the printing and mail-out of 75 copies of The Parkinsonian $50 covers the cost of 30 people calling our free phone line for advice and information $30 provides information packs for two newly diagnosed people $ ____________________ my choice

My cheque is enclosed made payable to Parkinson’s NZ Please charge my Visa Mastercard

CALL OUR CREDIT CARD DONATION HOTLINE: 0800 473 4636 Charge my credit card: __ __ __ __ / __ __ __ __ / __ __ __ __ / __ __ __ __ Expires: ___ /___ Card holders name (as it appears on your card): _________________________ Signature: _________________________ Please return in the envelope provided or send to Parkinson’s NZ, PO Box 11067, Manners Street, Wellington.

THANK YOU! Parkinson’s New Zealand PO Box 11-067, Manners St, Wellington 6142 • Phone: 04 472 2796 • Fax: 04 472 2162 • Email: info@parkinsons.org.nz • Web: www.parkinsons.org.nz • Freephone: 0800 473 4636 / 0800 4PD INFO


CONTROL YOUR

SYMPTOMS

LONGER

Comtan is taken together with levodopa and increases the time Parkinson’s symptoms are effectively controlled.1-4 Ask your doctor if Comtan is right for you.

Comtan® is a prescription medicine for the treatment of symptoms of Parkinson’s Disease in people already taking a medicine called levodopa.

The tablet contains

200mg of entacapone. Check with your doctor if Comtan is right for you. Comtan is fully funded, prescription and doctor’s charges will apply. Do not take Comtan if you are pregnant, breastfeeding, have liver disease, a tumour on the adrenal gland (phaeochromocytoma),

severe

muscle

weakness or a serious condition called neuroleptic malignant syndrome. Tell your doctor if you have severe kidney disease, are on dialysis, have heart disease, or you are on certain medicines for depression like MAO inhibitors, warfarin or iron. Common side effects are nausea or vomiting, diarrhoea, constipation, pain in the stomach, dry mouth, dizziness, vertigo, shakiness, headache, increased sweating, difficulty sleeping, unusual dreams, feeling depressed, reddish-brown urine. Rarely sudden onset sleepiness. If symptoms persist or you have side effects see your doctor. Always read the label and use strictly as directed. Comtan is the registered trademark of Novartis AG. Novartis New Zealand Limited, Auckland. For further information check the Consumer Medicine Information

If you would like to receive a free patient booklet entitled “10 Key Points you need to know about levodopa therapy”, please call our free phone number

FREE

[CMI] at www.medsafe.govt.nz

P AT I E N T

BOOKLET

References: 1. Rinne UK et al. for the Nomecomt Study Group. Entacapone enhances the response to levodopa in parkinsonian patients with motor

on 0800 838 909. This leaflet focuses on how to get the most out of levodopa therapy in the long-term.

fluctuations. Neurology 1998,51,13091314. 2. Kieburtz K et al. for the Parkinson Study Group. Entacapone improves motor fluctuations in levodopa treated Parkinson’s disease patients. Ann Neurol 1997;42:747755. 3. Larsen JP et al. for the NOMESAFE study group. The tolerability and efficacy of entacapone over 3 years in patients with Parkinson’s Disease. Eur Neur 2003;10:137146. 4. COMTAN® Datasheet, Novartis New Zealand Limited. COM 0810-191-0812 TAPSNA 4369

www.comtan.co.nz

The Parkinsonian December 2011  
The Parkinsonian December 2011  

The Quarterly Magazine of the Parkinsonianism Society of New Zealand Inc.

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