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MARCH 2014

ISSN 1177-0635

VOL. 17 – NO.1

Community Educator Service Parkinson’s New Zealand is pleased to announce that the Field Officer Service has been renamed the Community Educator Service. Our Field Officers, many of whom have eagerly awaited this change, will now be known as Community Educators and Community Workers. In the 30 years Parkinson’s New Zealand has been operating, models of care for people with Parkinson’s have changed. In the past most of the advice was given by a doctor or neurologist. Now many centres are using a multi-disciplinary team approach where Parkinson’s Community Educators make up part of the team at the hospital along side neurologists, physiotherapists, occupational therapists and other health professionals. So why change the name? For some time now the title Field Officer has caused confusion amongst the health sector groups we work with. Plenty of organisations use the title Field Officer, but the roles it is used for are highly varied. When a Field Officer was introduced to other health professionals it was not immediately clear to them what the Field Officer’s role was or what their qualifications were. When deciding to change the name of the service and the job titles for our staff, Parkinson’s New Zealand looked at the terminology used by others in the healthcare field. Educators exist throughout the health sector and some of you will already be familiar with them. Secondary services in hospitals use Educators in support and advocacy roles so, for example, many oncology departments employ Nurse Educators. These Educators provide information, education and advice for people being treated for cancer. This is similar to the service that our Field Officers have been providing for people living with Parkinson’s. Now when our Parkinson’s Community Educators are working alongside other health professionals they have a title that gives them the status they deserve as they are instantly recognisable as someone who has both an expertise in the field of Parkinson’s and a relevant health qualification. The importance of only recruiting people with an appropriate qualification was recently reinforced when our Clinical Leader Stephanie Clare had a conversation with staff at a local hospital’s neurology department. As part of her role Stephanie

works to strengthen relationships with local hospitals to ensure our services are understood and used by them. She was updating them on changes in the local area. They were extremely happy to hear that the newly recruited Community Educator for the area had relevant and up to date health qualifications. They are keen to include her as part of the multi-disciplinary team in clinics assessing people with Parkinson’s, something they said they were unable to do when the person in the role was unqualified.

HOW THIS NEW NAME WILL AFFECT THE SERVICE YOU RECEIVE Sometimes, when an organisation changes the name of a service they provide it is because the service is also being changed, or even being cut back. Parkinson’s New Zealand is committed to retaining the current level of service we provide. Some other health related charities have, in recent years, been forced to cut back their service due to budget constraints. These organisations have gone from providing a service similar to Parkinson’s New Zealand to a telephone only service. Funding is tight, and we are reliant on donations, grants and bequests to enable us to provide our world class service. However we are committed to raising the money we need to ensure our Parkinson’s Community Educators can continue to provide this service.

PARKINSON’S COMMUNITY WORKERS In some areas our existing staff do not currently hold a relevant qualification. These Parkinson’s Community Workers will continue to provide many of our services with the support of a Community Educator or Parkinson’s New Zealand’s Clinical Leader. If you have any questions about this change in service name, please speak to your Parkinson’s Community Educator or you can call our Clinical Leader Stephanie Clare on 0800 473 4636.

www.parkinsons.org.nz

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Services provided by Parkinson’s Community Educators • Home visits. These provide individualised advice through a personal assessment. Our Community Educators work with the person with Parkinson’s, their family and carers to provide information and support to an agreed plan that promotes best health and lifestyle.

• Provide training and information for staff at rest homes. Your Community Educator will work with staff at rest homes, hospitals and care facilities to provide training and advice on best practice for the care of people with Parkinson’s.

• Support groups for members with similar needs or issues. This may include groups for people with Parkinson’s, carers, or people with early onset Parkinson’s. These groups come together to share coping strategies, experiences and are a chance to establish social networks. These meetings also provide relevant information and educational opportunities, and speakers.

• Social activities provide a sense of togetherness and give members an opportunity to meet, talk and support each other during social outings. Your Community Educator will be able to tell you about the social activities held in your area.

• Referrals. Your Community Educator can give advice and liaise with health professionals and others who work with people with Parkinson’s in the community, as appropriate. For example Speech Language Therapists, Occupational Therapists (who can arrange things like hand rails or bath seats, they can also help you learn new ways to do daily activities) and Physiotherapists.

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• Advice about the monitoring of medication. Parkinson’s medication routines are unique to each individual and your Community Educator can help with information about managing side effects, ‘on and off’ periods and sleep problems. • General advice. If you need advice about how to arrange mobility vouchers, parking permits, home help and other general assistance, your Community Educator can help. • Advocacy. Need someone to work beside you or speak on your behalf? Our Community Educators can assist with conversations with hospitals, specialists and employers.

• Exercise and other therapies. Your Community Educator can let you know what programmes for people with Parkinson’s are available in your area. This may include exercise, physiotherapy, hydrotherapy and art or music therapy sessions. Research has shown that exercise is a vital component in the overall management of Parkinson’s. • Educational seminars. These may be held by branches or divisions of Parkinson’s New Zealand or other organisations. Education seminars provide access to a variety of speakers including neurologists, Parkinson’s researchers, pharmacists and other health professionals. Your Community Educator can advise you about any seminars that may be occurring in your area. • Facilitate family/whanau meetings. Community Educators are available to meet with family/whanau to discuss how they can best support their family member. They can provide information about Parkinson’s to give family/whanau a better understanding of the condition. They can also provide information about respite care, both day programmes and short term care, available in your area.

UPBEAT Weekend UPBEAT Members (diagnosed before the age of 60 and currently under 65 years old) - do you fancy a getaway to sunny Hawke’s Bay this winter? The 2014 UPBEAT Weekend is being held in Napier in August. This is your chance to connect with other people living with early-onset Parkinson’s and learn more about it. Details will be provided in the UPBEAT Newsletter and on the website as they become available. Kathy who has been to two UPBEAT weekends said she finds them very informative. “It is a good way to meet other people with Parkinson’s and my husband found it useful to speak other partners. It is great to share experiences.”

“The informality of the weekend meant it isn’t depressing or ‘heavy’. The variety of the speakers, and a good amount of question and answer time, meant that you took something away from each presentation. Coming from the provinces it isn’t like coming from a big town or city. We don’t have an active UPBEAT group so this is an opportunity to spend time with younger people with Parkinson’s. I’d really recommend younger people take the time to attend.”

THE PARKINSONIAN


A WORD FROM THE CHIEF EXECUTIVE

Tena Koutou Katoa In the last edition of The Parkinsonian we covered the launch of the latest edition of Parkinson’s: a guide for the newly diagnosed. I am pleased to say we have had many requests for this guide and good feed back from those who received it. Just yesterday I received an email from a person who had received the guide and wanted copies sent to other members of her family living in different parts of the country. She said “thanks so much, I have found my copy invaluable and I know my siblings will too”. It is good to know our publications are reaching those who need them most. If you know someone who might benefit from reading this please call us on 0800 473 4636 or talk to your Parkinson’s Community Educator.

We know that many of our readers were disappointing to hear that the clinical trial using pig cells to treat Parkinson’s has been put on hold (see page 5). However, it is heartening to know that the research team are taking such a prudent and cautions approach. We look forward to hearing better news about the trial soon.

The end of last year and the start of this year has been a busy time for Parkinson’s New Zealand and our divisions and branches as we have sadly said good bye to a number of our staff and recruited their replacements. Many of these departures are staff who have retired after many years of service to their local area or decided the time was right for a new challenge. We wish all these former staff members well and thank them for their efforts working with us.

2014 will be an exciting year for our organisation and I look to seeing many of you at local events.

I have been gratified by the response we have received internationally for our coverage of the World Parkinson Congress late last year. Lots of other organisations are using our videos which have now been watched by hundreds of people. Our coverage in The Parkinsonian has also been commended by the World Parkinson Congress.

Nga mihi nui Deirdre O’Sullivan

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Parkinson’s New Zealand AGM The AGM of Parkinson’s New Zealand will be held on Saturday 12 April 2014 at 12pm. The AGM is preceded by the annual workshop on Friday 11 April. Both of these meetings will be held at the St John’s Conference Centre in Wellington.

Brain Awareness Week 10 – 16 March

A series of lectures and Brain Days are held around the country to mark Brain Awareness Week. This year there will be lectures held in Gisborne, Kapiti, East Auckland, Christchurch and Queenstown. Brain Days will be held in Central Auckland and Dunedin. Go to www.brainweek.co.nz to find out more.

MARCH 2014


NEWS & RESEARCH PIG CELL TRIAL ON HOLD

suggest that chemicals produced by fungi may play a part.

The Parkinson’s clinical trial being conducted in Auckland by biotechnology company Living Cell Technologies has been put on hold. The trial involves implanting encapsulated choroid plexus cells in the hope that they will induce regeneration of dopamine producing nerve cells (see December 2012 issue of The Parkinsonian for more information). The first patient received the treatment in September and the company had approval to recruit three new patients. The company put the trial on hold as a precautionary measure after an internal audit found weaknesses in an earlier animal study.

It is important to remember, this study was conducted using tiny fruit flies, so before we can really be confident about this new connection we need to see evidence from studies in people.”

The results claiming the effectiveness of the therapy in rats were published in a medical journal in 2011 but the publication is now being withdrawn because they cannot be verified from the company’s source data. The data is also being withdrawn from regulatory documentation. The company reassures that it is only the rat efficacy data that is affected and they have complete confidence in the safety data however the CEO says they want to “take the path of utmost patient safety - the lowest risk - and put patient recruitment on hold and make sure everything is in order before we start again”. 4

They also indicated that the first patient who received the implant “continues to do well”. www.nzherald.co.nz

POSSIBLE NEW ENVIRONMENTAL RISK FACTOR FOR PARKINSON’S Chemicals emitted by the fungi (moulds and mushrooms) that grow in water-damaged or damp buildings can have a negative impact on people’s health. Experiencing this first hand after her house was flooded during Hurricane Katrina, prompted one US researcher to investigate the problem further. She and her colleagues concentrated on a volatile organic compound called 1-octen-3-ol. Also known as mushroom alcohol, it is commonly emitted by moulds and is responsible for much of the distinctive ‘mouldy’ odour. They used a fruit fly model (Drosophila) to look at the genetic, biochemical, and immunological impact of the chemical. Their studies found that fruit flies exposed to octenol had reduced dopamine levels and lost dopamine-producing nerve cells. Given this finding the researchers suggest that the chemical may represent a naturally occurring environmental agent involved in parkinsonism. Parkinson’s UK research communications manager commented on the study, noting that “We already know that exposure to some chemicals can slightly increase the risk of Parkinson’s, and this is the first study to

www.pnas.org www.parkinsons.org.uk

AUSTRALIAN FLIGHT ATTENDANTS SUING OVER PARKINSON’S In December it was reported that a former Qantas flight attendant was launching a test case against the Australian Government, alleging that its insistence that all aircraft have to be sprayed with insecticide upon arrival in Australia caused his Parkinson’s. Following the report a number of other former flight attendants who have Parkinson’s have come forward with their stories or contacted the lawyers about joining the case. Insecticide is sprayed through the cabin of all aeroplanes arriving in Australia to prevent mosquito-borne disease such as malaria from becoming established. It must contain two per cent of the active ingredient permathrin. The case hinges on establishing a link between exposure to the sprayed insecticide and developing Parkinson’s. There is growing evidence that pesticide exposure increases the risk of developing Parkinson’s. The Sydney Morning Herald quoted Associate Professor Kay Double, from the University of Sydney Medical School and Neuroscience Research Australia as saying, “Exposure to environmental toxins could contribute to it, but it’s unlikely that it’s going to make you get Parkinson’s. Being able to prove it scientifically or legally would be very difficult.” www.smh.com.au www.dailytelegraph.com.au

DBS RESEARCH In Deep Brain Stimulation (DBS) mild electrical pulses are used to stimulate a precisely targeted area of the brain. The pulses are generated and transmitted from a neurostimulator, similar to a pacemaker, which is placed under the skin on the chest. The signals that this stimulator sends are programmed by the neurologist and the pattern is optimised by a trial-and-error process. Late last year researchers at Standford University School of Medicine implanted a new type of impulse pulse generator into a DBS patient. This new neurostimulator not only transmits signals to the brain but can sense and store the brain’s electrical output. Information can be downloaded from the device allowing doctors to correlate a patient’s symptoms to their brain activity. It is hoped that they will be able to observe the neural signatures of not only the resting state, but also of voluntary movement and task performance, as well as of tremors, and to see directly how those neural signatures change in response to manipulations of DBS frequency and voltage output.

THE PARKINSONIAN


This information will not only give researchers a unique window on brain function and dysfunction in Parkinson’s, but should also improve the control of symptoms for DBS patients. In the long term, it is hoped to develop stimulators that can adapt the frequency and voltage of its pulses to the patient’s need at any particular time — for instance, walking versus talking versus sleeping.

The study did not address the effect of the compound on Parkinson’s, however it does pave the way for such a clinical trial to occur. Commenting on the study the National Parkinson Foundation’s National Medical Director said

Another recent study on DBS suggests that an additional benefit of DBS for people with Parkinson’s may be improved driving. A study published in Neurology compared the driving (in a driving simulator) of 23 people who had had DBS; 21 people with Parkinson’s without DBS and 21 people who did not have Parkinson’s. It also compared the driving of the people with DBS under three conditions: stimulator on; stimulator off and stimulator off with levodopa.

The second study reported on the trial of gene therapy treatment ProSavin. This was published in The Lancet in January. ProSavin is a gene therapy approach to deliver the three key enzymes required to convert cells in the brain to manufacture dopamine. It is delivered via injection into the affected area of the brain. The trial involved 15 patients (three at low dose, six mid-dose, six high dose). It found that ProSavin was safe and well tolerated in patients with advanced Parkinson’s.

Based on driving errors, people with Parkinson’s who had received DBS performed pretty much the same as the controls, however those without performed worse. When looking at the tests of people with DBS when it was turned on or off and off with levodopa, the driving was more accurate with stimulation on than with levodopa.

It also looked at the efficacy of treatment and reported improvement in motor symptoms in all patients 12 months following treatment. The effect continued in some participants for up to 48 months after ProSavin was administered.

www.med.stanford.edu www.nwpf.org

NEW TREATMENTS – SOME PROMISING EARLY RESULTS While there are effective treatments available to manage Parkinson’s, there are currently none that can stop or slow the progression of the condition by preventing the neurodegeneration of the dopamine producing cells in the brain that is its underlying cause. This is therefore an area of intensive research with groups around the world approaching the task for many different angles. Over summer the findings from a two early trials were published and widely reported. These were primarily focused on the safety and tolerability of the treatments, which is an important step that any potential treatment must pass before it can be further developed. The first was the Safety of Urate Elevation in PD (SURE-PD) study. Earlier studies have suggested that Parkinson’s progresses more slowly in people whose natural levels of uric acid (urate) are higher than average. Research with mice has also shown urate to have neuroprotective properties. You have to be careful though, because too much urate can cause kidney stones and gout. The SURE-PD study was aimed at finding out if a chemical known as inosine, which the body can convert to urate, can safely and effectively raise the level of urate in the blood and brain of people with early Parkinson’s. It found that, while some participants developed kidney stones, urate levels can be relatively safely elevated by taking oral inosine.

“Though the results of the current study are promising, we are still a ways away from declaring inosine as an effective neuroprotective agent for early stage Parkinson’s.”

Parkinson’s UK’s Director of Research and Innovation, commented on the report “Gene therapy is an exciting area of development in Parkinson’s research. However, it’s important to remember that this is a small trial involving just 15 people. Although promising, further larger and longer trials are needed before we can be fully understand the effects of ProSavin and how it compares with existing drug treatments.” www.parkinson.org www.pdf.org www.parkinsons.org.uk www.thelancet.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. To celebrate World Parkinson’s Day, Parkinson’s Auckland will be hosting a public lecture by one of New Zealand’s leading neurologists Dr Barry Snow. Date: Friday 11 April at 1pm Venue: Greenlane Christian Centre 17 Marewa Ave Greenlane (there is plenty of parking available).

World Parkinson’s Day Lecture AUCKLAND

MARCH 2014

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CARERS CORNER

Respite Care Caring for another person is challenging. Taking a break every so often is important for both the physical and mental health of carers. In the September 2013 edition of The Parkinsonian we talked about getting funding for respite services. In this edition we talk about arranging respite care at a residential care facility.

WHY IS RESPITE CARE IMPORTANT?

Respite also gives the person you care for a break and a change of scenery. By spending this time in a care facility they will meet new people, have a change to their routine and be involved in different activities they may not otherwise have an opportunity to try.

them. You should talk to the staff member about the needs of the person you care for. Make sure you ask them about their experience of caring for people with Parkinson’s. Can residents manage their own medications? If not, what systems do they have in place to ensure medications are given to people with Parkinson’s on time? You may like to take a copy of Parkinson’s New Zealand’s wallet card Get it on time which explains why timing of medications is so important for people with Parkinson’s. If you feel the facility staff are not knowledgeable enough about Parkinson’s to care for your family member/friend, suggest they contact the local Parkinson’s Community Educator who can arrange to run in-service training for the staff at the home.

Once the respite care is over you will have new stories and experiences to share with each other.

WHAT DO I NEED TO DO TO PREPARE FOR RESPITE CARE?

HOW IS RESPITE CARE FUNDED?

The facility you have booked will give you a list of things to pack. Make sure you label or name clothing so it doesn’t get lost. Mementos from home like a family photo, favourite pillow, books or magazines might also help them feel more at home.

Respite care is important for both the person being cared for and the carer. Caring for a friend or loved one can be hard work. From time to time you might need a break to allow you to take some time to attend a special event, follow an interest or just have some time where you aren’t responsible for anyone but yourself.

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The Ministry of Health provides two types of funding. To see if you qualify for a subsidy, and to determine how much you are eligible for you will need to be assessed by a Needs Assessment Service Coordination (NASC) organisation. Your Parkinson’s Community Educator, GP or local DHB can give you details of who to contact in your area. The assessor will advise you how many days you are eligible for. For further details about funding please see The Parkinsonian September 2013.

HOW OFTEN SHOULD I TAKE RESPITE CARE? This will be somewhat dependant on the allocation of days you have been given. Respite care breaks take quite a bit of time to plan and pack for so you probably want to take at least a couple of days each time. You should aim to spread the breaks across the year to ensure you get a break when you need it. Make sure you use up your allocation each year as your respite days don’t get carried over to following years.

HOW TO CHOOSE A FACILITY You can get a list of the facilities that provide respite care in your area from the NASC assessor, your Parkinson’s Community Educator or your GP. It is best to phone the facility first to see if they have availability for the dates you wish to book. You can then arrange to visit the facility and meet with a staff member. Ideally you should bring the person you are caring for along to this meeting so they can help decide which facility best suits

MEDICATIONS Ensure you provide a list of medications and the time of day the person you care for takes them. Talk to the facility, they may ask you to get these prepared into blister packs from your pharmacist for the duration of the stay. Make sure they fully understand the need for the person with Parkinson’s to get these medications on time.

SHOULD I VISIT THE PERSON I CARE FOR DURING THIS RESPITE PERIOD? You need to ensure you have a proper break, and the person you care for needs to adapt for this time too, so visiting every day, especially during short breaks is usually not recommended. You can always call the home and ask how they are getting along. For longer stays you may want to agree to call and speak to them or visit throughout their stay. You should also ask other members of the family or friends to pop in and visit or call.

THE PARKINSONIAN


FACT SHEET

Parkinson’s and Tremor A tremor is an involuntary, rhythmical movement that affects one or more parts of the body. It may affect the hands, head, legs, body and/or voice. Tremor is the most common visible sign of Parkinson’s. It is also one of the symptoms most often associated with Parkinson’s.

DOES EVERYONE WITH PARKINSON’S DEVELOP A TREMOR?

WILL ANYTHING MAKE MY TREMOR WORSE?

No. Approximately 70% of people with Parkinson’s will develop a tremor, and not all tremors are a symptom of Parkinson’s.

WHAT CAUSES TREMOR IN PARKINSON’S? Parkinson’s is caused by the degeneration of a group of nerves in an area of the brain called the substantia nigra, which is located in the base of the brain. These nerves produce the chemical dopamine which is a neurotransmitter – a chemical that is released by the nerve cells to send messages to other nerve cells. This degeneration of the dopamine system produces a loss of inhibition of certain brain structures. This causes parts of the nervous system to fire rhythmically causing a tremor.

Emotions such as stress, anxiety, anger or fear can cause tremor in all people and can worsen tremor in a person with Parkinson’s. However, this is temporary and will settle down as the heightened emotion subsides. Tremor can also be caused or worsened by some medications including some used to treat mental health conditions, antinausea and anti-dizziness medications. There are also some antiasthma drugs, and the anti-epileptic sodium valproate which can heighten tremor. It is always good to discuss new medications with your doctor to see if that particular medicine can cause or worsen tremor. Never stop taking medication without first consulting your doctor.

IS THERE ANY TREATMENT FOR TREMOR?

ARE ALL TREMORS THE SAME? There are two main types of tremor that affect people with Parkinson’s. • Resting tremor – this occurs when your body is relaxed and the affected part is not doing anything. Often this tremor has some distinct characteristics, commonly called ‘pill rolling’ as people seem to be rolling a small sphere between their thumb and index finger. • Action tremor – this tremor happens when you are making a movement, like drinking from a cup or holding something. This tremor is usually more intrusive as it interrupts intended function. People with Parkinson’s may be affected by both of these tremors though resting tremor is more common.

Although there is no cure for tremor, there are ways it can be managed.

Self help As anxiety or stress can make tremor worse, it is important to find ways to relax. Exercise can also help to improve your sense of wellbeing. Activities like yoga and complementary therapies like acupunture, reflexology, music and art therapy may also help you relax. Some people with a mild hand tremor find that squeezing or rolling a ball, pen or similar object can help supress the tremor.

Medication

A tremor is sometimes the first symptom of Parkinson’s. Usually it starts in the fingers of one hand and in time can spread up the arm and even extend to other parts of the body as the condition progresses. Occasionally, Parkinson’s tremor might start elsewhere, like the foot, and then spread from the leg to the arm on the same side.

Tremor can sometimes be suppressed by medication. Levodopa (Madopar, Sinemet, or Sindopa) can reduce or stop tremor quite effectively in some people. However, not everyone’s tremor responds to levodopa even if in the same person the other ‘cardinal features’ like rigidity and slowness of movement, respond well to the drug. Current thinking is that this may be because tremor, unlike other symptoms of Parkinson’s like rigidity and slowness of movement, is not a direct effect of a lack of dopamine.

In some cases, tremor can spread to involve other parts of the body including the lips, tongue, jaw or trunk of the body. Tremor of the head is very uncommon. Some people with Parkinson’s experience an ‘internal tremor’ where there is a feeling of a tremor within the body but there are no visible signs of this to other people.

Dopamine agonist medications like ropinirole, lisuride and pramipexole also have anti-tremor effects when used alone or in combination with levodopa. People taking these drugs need to be aware that sometimes a side effect of these drugs is impulse control disorder. Please refer to our booklet The Drug Treatment of Parkinson’s for more information.

HOW DOES TREMOR AFFECT PEOPLE WITH PARKINSON’S?

MARCH 2014

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FACT SHEET – CONTINUED FROM PREVIOUS PAGE

There are also some anti-cholinergic medications such as orphenadrine and benztropine (used to treat motion sickness and REM sleep disorder) that can have a role to play in tremor management, for those who are unable to take dopaminergic drugs. These medications can cause or aggravate memory problems in some people. Beta-blocking drugs can also reduce tremor is some cases. People may use them in small doses to control their tremor where they feel it may be worsened by a situation where they may be nervous (e.g. before a big meeting or social occasion). You will need to consult your doctor to see if this is a suitable treatment for you.

As with all medications and other treatments, advice should always be sought from your doctor or specialist to ensure that you are taking the right medication for you. No two people with Parkinson’s are the same and no two treatments will be exactly the same.

Deep brain stimulation Deep brain stimulation involves implanting small electrodes within the brain. A implanted pulse generator is inserted surgically under the skin on the person’s chest. This then passes small electric currents through the electrodes in the brain. This surgery is not suitable for everybody but for those who have it, there is usually improvement in their tremors.

Essential Tremor People often confuse Parkinson’s with Essential Tremor. In some cases, people who are diagnosed with Essential Tremor are later found to actually have Parkinson’s, and vice-versa.

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Essential Tremor is a separate condition and far more common that Parkinson’s. Essential Tremor primarily affects the hands, and often the head and rarely the feet. Voice, tongue, legs and trunk may be affected too. The head tremor may be seen as a “yes-yes” or “no-no” motion.

Essential Tremor is an action tremor that occurs when the affected body part is moving. Essential Tremor can happen at any age but is most common after age 40. There is a family history of Essential Tremor in about 50% of those affected. In familial Essential Tremor children of a parent with Essential Tremor have a 50% chance of inheriting the condition.

Sources: Parkinson’s UK, EPDA, The Parkinson’s Disease Foundation

The Richter Series Wellington artist Pippa Carvell, was diagnosed with Parkinson’s when she was 25. This work is part of Pippa’s “Richter Series” of line drawings, which records, like a seismograph, her Parkinson’s symptoms of tremor and freezing. The series is also a permanent record of Pippa’s determination to make choices and decisions and take back some control over her life. Pippa starts each drawing by grasping an Indian ink pen in her right hand. She then uses her left hand to pull the right one across the page. The process is repeated, line after line. Freezes and pauses are recorded as nodes of bleeding ink. Massive concentration is required and sometimes the whole exercise becomes transcendent and meditative. The work reflects her emotions. Tremors recorded in a line may become amplified in succeeding ones if stress levels are high. If Pippa’s medication

is working its magic and she relaxes enough to lose herself in her work, the seismic landscape she creates gradually flattens out. In 2011, Pippa exhibited her work in London.

“If Pippa’s medication is working its magic and she relaxes enough to lose herself in her work, the seismic landscape she creates gradually flattens out.” THE PARKINSONIAN


REAL LIFE STORIES

Kids with a parent with Parkinson’s At the World Parkinson Congress there were a number of sessions on the effect having a parent with Parkinson’s may have on children. David Morley from Oxford University has undertaken some research to try to understand the needs of the children of people with Parkinson’s. Fears for the future, role adjustments within the family and problems with peer relationships are all some of the problems that have been identified, however there is a lack of data from the children of healthy parents to compare this to. Parkinson’s New Zealand filmed video interviews with four presenters at the congress who spoke about this topic. These videos are available on our You Tube channel. The main message that came from these presenters was the importance of being honest with children about what is happening to their parent, and considering getting counselling for the children to help them work through their feelings about their parent’s condition.

VANESSA

The Parkinsonian spoke to New Zealanders who have a parent with Parkinson’s, or are a parent with Parkinson’s.

Vanessa suggests that young people with a parent with Parkinson’s should write a diary or record special occasions or times with their parent so that they remember what they were like before they become significantly disabled. “It is such a slow process that you don’t realise at the time what is missing.”

KATHERINE, ARIANE & CIARAN Ariane was five and Ciaran was one year old when Katherine was diagnosed five years ago. As her children have grown up with her having Parkinson’s Katherine says she has tried to answer questions as honestly as she can. The children are part of her journey, they come along to neurologist consultations. “They see me at my best and worst, sometimes it is unavoidable. I hope the experience they gain from this is a shed load of empathy” Katherine says. Ariane is a deep thinker and Katherine says she thinks she is worried and angry about the Parkinson’s. “She just wants it to go away” says Katherine. This wasn’t helped when Katherine was over medicated and had a car accident. Although the children weren’t in the car and no one was injured, Katherine didn’t realise at the time the impact this had on Ariane who now worries in the car. “Ariane has lots of questions and a real thirst for knowledge. She is like my husband Paul in this respect, he has done a lot of reading about Parkinson’s so fortunately can answer most of her questions. Ariane says she wants to be a scientist and cure Parkinson’s. She feels the pressure of sometimes having to help” says Katherine. “For Ciaran all the uncertainty about what was wrong with me started before he was born. He was one when I was diagnosed and I was very consumed with what was wrong. I found it very frustrating not being able to do nappies properly.” Katherine says of the two kids he is the one that watches her, but doesn’t say much. “We are keen to keep the dialogue going, I let the kids know it is OK to just ask and not to bottle things up.”

Vanessa’s dad was diagnosed with Parkinson’s 28 years ago when she was about 10 years old. She doesn’t remember much about being told of his diagnosis. She said because she didn’t know or understand what the effect would be or how his condition was going to progress there wasn’t any feeling of fear going through her teenage years.

“Try to build a close relationship early on, before communications becomes difficult. Relationships with a parent are so different as a child compared to as an adult. I think I have missed out on an adult relationship with my dad, more so than when I was growing up and he was not as ill” she says.

KATHY & THOMAS Kathy was diagnosed with Parkinson’s when her son Thomas was nine years old and daughter Hayley was 12 years old. Kathy and her husband Bruce sat down with their kids and told them she had Parkinson’s immediately after returning from the neurologist appointment where she was diagnosed. Thomas, now 19 years old, doesn’t remember much about being told about Kathy’s Parkinson’s. Kathy remembers he asked one question “are you going to die?” Once he was told she wasn’t Thomas was happy with that. Her daughter Hayley wanted to know more “but I didn’t know much so we all found out together” Kathy says. Kathy told us “I didn’t feel any different to the way I’d felt the day before I was diagnosed. I never got angry about my diagnosis, and neither did my kids.” Thomas says he just thinks he got used to his mum’s Parkinson’s as she has had it for most of his life. It has helped that she has always been very open about having Parkinson’s, she is open about it with his friends, so it is just ‘normal’. He says he doesn’t treat her any differently although he knows he sometimes needs to help out. “But that is what you do in a family, you help each other out” Thomas says. Asked what he felt was important for parents to know he said “just be honest with your kids”.

MARCH 2014

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CONTINUED FROM PREVIOUS PAGE

Web resources SOANIA MATHUR

DAVID MORELY & ELAINE BOOK

SHARON DABORN

PARKINSON’S NEW ZEALAND’S YOUTUBE CHANNEL As mentioned above, Parkinson’s New Zealand recorded interviews with speakers from the World Parkinson’s Congress. Three of these videos are on the topic of children who have a parent with Parkinson’s. Soaina Mathur from Canada was diagnosed when she was pregnant with the first of her three daughters. She talks about helping very young children understand Parkinson’s. Sharon Daborn from

Austrialia shares the outcomes of a round table discussion on teenagers who have a parent with Parkinson’s. Elaine Book, social worker from the Pacific Parkinson’s Research Centre in Vancouver Canada and David Morley, psychiatrist, from the University of Oxford UK, give their advice on parenting if you have Parkinson’s.

PARKINSON’S IN YOUR LIFE – A GUIDE FOR TEENAGERS Produced by Parkinson’s UK, this booklet is aimed at teenagers and young people affected by Parkinson’s. It explains the condition in an accessible way, and offers information on how to handle difficult emotions. 10

This booklet can be downloaded from the Parkinson’s UK website www.parkinsons.org.uk/content/parkinsons-your-life-guide-teenagers.

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THE PARKINSONIAN


GET GOING

4 Peaks 4 Parkinson’s in 24 hours

BY CHARLOTTE LITTLEWOOD

When my mum found out she had Parkinson’s a few years ago, it opened up my eyes to how scary and daunting it is to be diagnosed. Since then, it has been inspiring to watch my mother educate herself about Parkinson’s, get involved in research projects and tirelessly raise awareness and funds to support others who live with the condition. It has also made me realise how extremely important organisations like Parkinson’s NZ are to making sure no one has to face Parkinson’s alone, and left me wondering what I could do to support this work. If I am to be honest, the training has been a little nuts at times, like getting back to the carpark at North Egmont after completing a summit of Taranaki, then turning around and walking straight back up the mountain again. But the worthy cause has spurred us on. When the pain sets in and it all starts to feel unachievable, I think of how much harder it is for people with Parkinson’s and how (unlike us) they don’t have a map telling them exactly what’s ahead, they don’t have the knowledge that the difficulties will soon pass, and they don’t have the luxury to just stop, turn around and go back home if they really get fed up. It really puts things into perspective. The most amazing part of this adventure has been the generosity of those donating. The sheer number of people whose own lives have been impacted by Parkinson’s is phenomenal. It makes you appreciate more fully, just how vital the work of Parkinson’s NZ is.

CHARLOTTE AND LEIGHTON LITTLEWOOD

In September last year, after staring at Mount Taranaki from my office window, an idea popped into my head and I knew it was finally time to follow my mother’s lead. Before I knew it, my husband, two friends and I had decided to try and raise $20,000 for Parkinson’s NZ by climbing the four highest peaks in the North Island in 24 hours (Mt Ruapehu, Taranaki, Ngauruhoe and Tongariro). That’s 4.2km of ascent – about half the height of Everest. To make it more challenging we thought we’d also try and break some of the speed records on Mount Taranaki as part of the training. We’ve got two so far, and hope to beat another three before we take on our final challenge on 15 February (or around that date depending on the weather). Oli Vincent now has the men’s record for running the Pouakai Circuit in 2hrs 54mins and I have the women’s record for two consecutive summits of Taranaki in 9hrs 30mins.

It’s important to note that none of this could have happened without the commitment and support of the crazy people who’ve joined the team, and the people who have offered to be support crew: Leighton Littlewood, Oli Vincent and Carl Whittleston (and Karl Watson, Victoria McKay and Linda Russell as support). Just like Parkinson’s, this challenge is too big for one person to do alone. It’s a true team effort, which offers rewards in itself. We know we’ve done all the preparation we need to. We’ve now just got our fingers crossed for the good weather we need to get up all the mountains. If you want to know more about our challenge, we’ve made a number of videos, capturing our training. Just search on YouTube for the “4 Peaks 4 Parkinsons” channel. You can also sponsor us online at www.fundraiseonline.co.nz/4peaks4parkinsons

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.

MARCH 2014

11


NEWS FROM AROUND THE COUNTRY

BERNIE AND KAYE CROSBY

TARANAKI BBQ

NEW YEAR’S HONOURS FOR WAIKATO MEMBERS Bernie and Kaye Crosby were both made Officers of the New Zealand Order of Merit for services to business and philanthropy. Kaye and Bernie founded Prolife Foods in 1984. The company which produces some of the most well-known food brands in New Zealand, including Mother Earth and Alison’s Pantry, and employs more than 600 people. They have since stepped down from day-to-day management, Kaye in 2005 and Bernie a year later, but remain on the board.

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Their philanthropy includes support for the Hamilton Gardens, the MESH Sculpture Trust, and the Coromandel Westpac Rescue Helicopter Trust. Bernie and Kaye have also been generous supporters of the Parkinson’s community, both in Waikato and nationally. Last year they created a charitable trust and initiated a campaign to raise $1 million over five years to fund neurological research into Parkinson’s.

SUMMER PICNICS A number of divisions and branches celebrated the summer weather by holding their annual picnics in February. Parkinson’s Auckland members gathered in Cornwall Park for a shared picnic lunch and conversation. While Taranaki and Tauranga divisions both headed to the beach for a barbeque and get-together, at Urenui and Kulim Park.

Here is what Community Educator Sue Allemann said about Taranaki’s BBQ. “On Sunday Taranaki members enjoyed the annual BBQ at Urenui Beach Domain. About 70 members attended. Although it was a sunny day, due to the wind, we were unable to venture out onto the decking area, but were able to make full use of two rooms available in the hall. Several members were on BBQ duties and managed to cook the meat despite the wind. Pot luck salad and dessert meant a wonderful array of food was on offer. Charlotte and Leighton Littlewood spoke about their “4 Peaks 4 Parkinson’s Challenge”, which is a fundraiser for PNZ involving climbing the four peaks in the North Island over 24hrs. Members wished them well and hoped for a few days of clear weather so they can achieve their goal! A very successful start to our social calendar for the year.”

EXERCISE GROUPS If you haven’t already honoured your New Year resolution to do more exercise, you’ll be pleased to know that most of our divisions and branches run exercise groups of some sort. These groups are just starting up for 2014, but don’t worry if you have missed a week or two, you can still join in. Talk to your Community Educator about the exercise activities run in your area. If none currently exist, talk to them about starting something up.

THANK YOU Iris & Eric Nankivell Charitable Trust

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

THE PARKINSONIAN

The Parkinsonian March 2014 vol17 iss1 web  
The Parkinsonian March 2014 vol17 iss1 web  
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