VOL. 15 – NO.3
Parkinson’s Australia National Conference A strong New Zealand contingent of Parkinson’s New Zealand staff, people with Parkinson’s, and carers attended the Parkinson’s Australia National Conference held at the Brisbane Convention & Exhibition Centre on the 13th and14th July. His address was followed by Professor Graham Kerr from the Queensland University of Technology who spoke about balance, gait, and falls in Parkinson’s.
FIELD OFFICERS SALLY ANDERSON AND VANESSA SHAW AND UPBEAT MEMBER ANDREW JOHNSON PRESENTED PAPERS AT THE CONFERENCE.
THE THEME OF THE CONFERENCE WAS: “BETTER KNOWLEDGE, BETTER OUTCOMES”. The Australian Governor General, Her Excellency the very elegant Ms Quentin Bryce officially opened the event, noting that her older sister had recently been diagnosed with Parkinson’s. Her Excellency described the conference as “a precious time for listening, learning, reflecting, developing ideas, experiences, renewing energy, enthusiasm and friendship.” And so it proved. Hosted by Parkinson’s Queensland, the conference attracted the full spectrum of people who live with Parkinson’s and those who serve the Parkinson’s community, including carers, neurologists, general practitioners, allied health professionals, researchers, pharmaceutical manufacturers. Auckland neurologist Dr Barry Snow appeared on the first day and took his audience through recent scientific developments in the field with his customary wit. The afternoon plenary session was a panel discussion involving the CEOs of Parkinson’s organisation and representatives of the Parkinson’s Australia Board titled How do Parkinson’s Organisations Help You? The following day was kicked off by keynote speaker Associate Professor Simon Lewis from Sydney. He must have been an excellent speaker as he managed to lead his audience through the grim progressive decline associated with Parkinson’s (constipation, falls, dementia...) with enough wit to have them in fits of laughter.
Amongst the other topics covered at the conference were: Parkinson’s causes and impacts; advances in surgical treatments; advances in drug and exercise treatments; depression and anxiety in Parkinson’s; caring for the carers; speech therapy. Besides formal presentations, the sessions were a combination of workshops and concurrent sessions. The organisers achieved a good mix of research topics and less technical and more accessible people-based topics. Two field officers – Sally Anderson from Auckland and Vanessa Shaw from Kapiti/Horowhenua — made presentations. Sally’s presentation Caring for the Carers — a New Zealand perspective won the conference “Best presentation” award in the carers section at the closing event. Sally outlined the way Parkinson’s New Zealand support services, including the field officer service, recognises and supports the “often undervalued, unrecognised, and underestimated work” the carers looking after the 10,000 New Zealanders diagnosed with Parkinson’s do. Sally said a number of Australian delegates were keen to quiz her on the field officer service after her address. The title of Vanessa’s presentation was Care in the Community: Optimising Quality of Life for People with Parkinson’s. Using two case studies as illustrations, Vanessa outlined how important receiving specialist support from a Parkinson’s New Zealand field officer is in empowering a person to deal with their condition. Field officers bring a vast array of expertise and experience to bear on their roles and by taking a holistic approach help a person with the condition maintain the best possible levels of physical , emotional, and mental well being, Vanessa told her audience. Auckland UPBEAT member Andrew Johnson also spoke and his presentation Parkinson’s Disease—It’s Just All in Your Head gave a candid snapshot of the changes in his life since his diagnosis at 35. Andrew described his journey from being a commercial
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“Simply put, if you consider that Parkinson’s is literally and figuratively ‘just all in your head’, you may in fact be able to enhance and preserve a good quality of life over an extended period of time.” Andrew Johnson lawyer to being a ‘housedad’ to his two young children and how making the effort to increase his self-awareness about his Parkinson’s and subsequent actions based on that awareness had helped him maintain his quality of life.
Diane believes it’s important for people with Parkinson’s to know that people care. Research may not yield an immediate cure but it is resulting in strategies for improved care with immediate benefits.
“Living with the uncertainty that comes with a progressively degenerating neurological disorder can be almost as difficult as the insidious changes to your mind and body caused by Parkinson’s” Andrew says.
While it was great the conference reinforced the message that the New Zealand system of looking after people with Parkinson’s and the people who care for them is a good one, Diane believes we can still learn from others. For example, the Australian Parkinson’s nurse specialists, (while spread very thinly on the ground) work very closely with health providers, closer than is the case here.
“Developing an awareness of the unique characteristics of your condition, by obtaining better knowledge about the disease for example, can help you, your doctors, and loved ones understand and track the progression of your illness and the difficulties you face. But self-awareness can only take you so far. It is how you use this state of mind that can help maintain your functionality as long as possible.”
Hutt Valley field officer Andrea Savage said what particularly struck her at the conference was hearing one of the speakers say that doctors have come to realise that they can’t treat Parkinson’s alone.
There is no doubt that Parkinson’s is a game changer, Andrew said, but that’s no reason to let the condition dictate the rules of the game.
“Parkinson’s by its very nature is complex. Therefore to achieve the optimum outcomes a team or multi-disciplinary approach is essential.”
People with Parkinson’s should use their new-found awareness to take control of their future as best they can, he believes.
Marlborough field officer Belinda Boyce said the conference reinforced her understanding of just how variable and “individual” a condition Parkinson’s is.
“Simply put, if you consider that Parkinson’s is literally and figuratively ‘just all in your head’, you may in fact be able to enhance and preserve a good quality of life over an extended period of time.” One attendee described Andrew’s positive outlook as “infectious”. (On the strength of his presentation, Andrew was asked to appear at a seminar for people living with Parkinson’s organised by Parkinson’s NSW in Sydney in early September.) Wellington field officer Diane Stephens said the conference conveyed a palpable feeling of forward progress. One of the strong messages to come out of the event for Diane was that people working in different fields—genetics, pharmacology, physiotherapy, speech therapy etc-are all moving forward in the same direction, looking for ways to improve the lot of people with Parkinson’s. “The range of topics covered conveyed the message that work to alleviate the condition is being carried out on multiple fronts simultaneously and that it’s not just all about finding a cure; that it’s also about making people feel better now and giving them hope.” Diane says the insights she gathered at the conference will translate into a sense of hope for the people in the support groups she reports back to.
“It’s such a complex mixture of motor and non-motor symptoms. This was driven home to me at the conference and this has given me plenty to think about when I deal with my clients.” The main thing Pam Grey from Nelson took away from the conference was the understanding that the more a person with Parkinson’s is involved with their own decision making, the less likely they will have depression and they will live longer. “It’s all about quality of life!” Sally Anderson came away from the conference secure in the knowledge that members of Parkinson’s New Zealand receive a very personalised service that offers them information, reassurance, and support, from a health professional. Parkinson’s New Zealand Clinical Leader Lea-Anne Morgan said her “Light bulb moment” actually came after the conference, when she was sitting on the plane home. “I suddenly realised that after all I had heard and seen, we are actually doing really really well here in New Zealand. We have good people and we are well organised. Sure, you can always do better and we are constantly fine tuning and improving things, but overall, I think we should be proud of what we are achieving.”
“Hope is important as it makes people feel positive and active, which is particularly important.”
A WORD FROM THE CHIEF EXECUTIVE
Tena Koutou Katoa Awareness Week, November 1-7 2012 focuses on exercise and we will be launching a new exercise resource. While medication is the cornerstone treatment for Parkinson’s we know that exercise is one of the most important things people with Parkinson’s can do. A regular routine can help you maintain abilities, strengthen your muscles, improve health and general fitness and increases mobility. In addition it can help reduce feelings of stress, anxiety and depression. Recent research has even shown that exercise may be neuroprotective and help dopamine producing cells work better and longer. This could potentially slow down the progression of Parkinson’s. As always during Awareness Week we are looking for volunteers to help with information stands, street appeals, distribution of posters, collection boxes, leaflets etc. So if you have a spare hour or two please do get in touch with your local division. Continuing this general wellbeing theme are our fact sheet and Carers Corner page. This edition’s fact sheet is about sleep, something that many people with Parkinson’s struggle with. The factsheet includes a number of practical tips that readers
may find helpful. Our Carers Corner looks at the importance of good nutrition for us all, especially those of us who care for others. I’d like to congratulate field officers Sally Anderson and Vanessa Shaw and member Andrew Johnson for having abstracts accepted for presentation at the recent conference in Brisbane. They all did a fabulous job at sharing their experiences of Parkinson’s in New Zealand with this international audience. With daylight saving time starting at the end of the month, perhaps it’s a good time for all of us to take advantage of the longer days to ensure exercise is a part of our regular routine. Perhaps it could be the start of something big, like running a fun run or even taking part in an overseas adventure to raise funds as part of Get Going. Kind regards, Deirdre O’Sullivan
LETTER TO THE EDITOR
We received the following letter from Pauline Mahalski of Dunedin in response to the article on fire safety and Parkinson’s we ran in the last issue. Dear Editor You may like to include my experience in the next Parkinsonian to extend the very good article in the last issue on “Fire Safety”. Wheat bags are a desirable alternative to hot water bottles as they avoid the hazards of juggling with near boiling water; however, I discovered that they possess dangers of their own. One evening I put my wheat bag in the microwave as usual and I went into the bathroom to get ready for bed. To my surprise, I heard the bleep of a smoke detector and went to investigate. I found a pall of smoke in the hall and smoke gushing out of the microwave. The wheat bag was on fire. I must have inadvertently dialled too much heating time. I turned off the machine, left it where it was, and aired out the house.
Next morning, my husband carried the microwave into our garage and I opened the door and removed the blackened remains of the wheat bag. It felt cold so I threw it into a plastic rubbish bag but half an hour later, it set fire to the bag. It must have retained heat internally. Luckily we found the fire before it could spread. We have learned our lesson: remain in the room while the microwave is on. Yours sincerely,
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 firstname.lastname@example.org | Web www.parkinsons.org.nz www.facebook.com/parkinsonsnz & Twitter @Parkinsonsnz Follow us on Facebook
NEWS & RESEARCH NEW RESEARCH PROJECT ON PREVALENCE OF PARKINSON’S IN NZ
discovery that could provide a link between the genetic and environmental causes of Parkinson’s.
In their July funding round the Neurological Foundation announced they were providing $78,143 to Dr Toni Pitcher, Department of Medicine, University of Otago, Christchurch for a research project titled Parkinson’s disease in New Zealand: Prevalence and medication consumption.
The second approach is a new business model for developing critical tools and distributing them to researchers at low or no cost. This allows them to remain focused on Parkinson’s research, rather than spending time and resources creating tools.
Currently, there is a distinct lack of information regarding the impact of Parkinson’s in New Zealand, with the most recent estimate of prevalence being a regional one from the early 1990s. Up-to-date information on the numbers of people living in New Zealand with Parkinson’s is important not least because our population structure is changing, and as the proportion of the population aged over 65 years increases, the number of people living with the condition will also increase. Dr Pitcher will use the national prescription database to analyse Parkinson’s drug dispensing data and provide an up-to-date estimate of the number of people with Parkinson’s living in this country and the trends of anti-parkinsonian medication use. Improved information will contribute to better planning and provision of appropriate patient-directed information and support services.
THE FOX APPROACH: GENETICS WILL DEFINE THE NEXT DECADE OF PARKINSON’S DRUG DEVELOPMENT. 4
Earlier this year more than 30 Parkinson’s researchers gathered for The Michael J. Fox Foundation’s (MJFF) annual Scientific Advisory Board (SAB) meeting. A top theme throughout the two-day meeting was the genetics of Parkinson’s. The Foundation believes that genetic research holds critical potential to help all people living with Parkinson’s, whether or not they carry mutations in genes linked to the condition. Although inherited forms of Parkinson’s are rare (estimated at around 5% of cases), the Foundation thinks that by studying their underlying biological processes scientists can better understand all forms of the condition (including the much more common sporadic form), opening new avenues to treatment. SAB members discussed the growing role of the Foundation in driving forward research into four specific genes associated with Parkinson’s known as LRRK2, alpha-synuclein, tau, and GBA. MJFF is devoting the lion’s share of its gene-based investments to two of these: LRRK2, the most common genetic contributor to familial Parkinson’s discovered to date, and alpha-synuclein. The following summarises the work the Foundation is doing on the two genes LRRK2 The MJFF is pioneering a four-pronged approach to LRRK2 in an effort to streamline and orchestrate drug development around the gene. A Biology Consortium of more than 30 investigator teams is looking into the structure and function of LRRK2 and the role it plays in Parkinson’s onset and progression. From their work to date they have identified a potential biomarker and some evidence that the gene has a role in the immune system: a
A Clinical Cohort Consortium will follow 3,000 individuals with or without LRRK2 mutations and their family members living all over the world. By studying these individuals over time, researchers can gain an understanding of the nature of Parkinson’s clinical features in the presence of the gene. Over the course of 2012, the Foundation aims to expand its resources into learning more about the diversity of populations associated with LRRK2. MJFF’s Industry Advisory Group on LRRK2 brings experts from the pharmaceutical industry together on a quarterly basis to review progress and share critical perspective on next steps for pushing promising research toward the clinic as rapidly as possible. The group comprises representatives of more than 10 major companies. Alpha-synuclein Evidence suggests that alpha-synuclein may play a role in the development of both genetic and sporadic cases of Parkinson’s. The presence of abnormal clumps of alpha-synuclein in the brain is used to confirm a diagnosis of Parkinson’s. While alphasynuclein’s role in Parkinson’s is still not clear, it is a major target for drug development. Currently, MJFF is supporting several different strategies for targeting alpha-synuclein in Parkinson’s. Researchers are working to find ways to prevent the clumps from forming in the brain, break up the clumps that have already formed, or eliminate the toxicity of the clumps. They are working with a number of biotechnology companies on synuclein-based drug developments.
CAFFEINE AS A POTENTIAL TREATMENT FOR PARKINSON’S A small study on caffeine as a treatment for Parkinson’s published in Neurology in August has been widely reported. The idea that drinking a couple of cups of coffee a day could be good for you seemed to catch the media’s attention. There is a well-established link between caffeine, most usually in the form of coffee drinking, and a lower risk of Parkinson’s. However not much is known about the effects of caffeine on people with Parkinson’s. The researchers in this study were most interested in its effect on sleepiness but didn’t find any improvement at the doses used (equivalent to between two and four cups of coffee a day). However, they did find that it improved motor symptoms. The authors feel that these potential motor benefits suggest that a larger longterm trial (the study lasted six weeks and involved 61 participants) of caffeine is warranted. Interviewed about the study by the Dominion Post, Parkinson’s New Zealand CEO Deirdre O’Sullivan said it was interesting but she
Sleep benefit was defined as a report of a “clear decrease in Parkinson’s symptoms after a period of sleep”. expressed caution at the small scale of the study. She noted that since coffee could also lead to negative effects, people should not change their intake until more research had been done or they have discussed it with their doctor.
PARKINSON’S VOICE INITIATIVE Mathematicians at Massachusetts Institute of Technology (MIT) are developing a computer programme that can detect whether or not someone has Parkinson’s from their voice. The software uses a speech-processing algorithm to identify tell-tale changes in the voice of a person with the condition. The initial study used 263 recordings of 43 people, who had been asked to sustain six or seven vowel “ah” sounds. After being trained on 10 changes or “dysphonias” in these recordings, the computer managed to diagnose Parkinson’s speech markers 99 per cent of the time in the lab. The researchers want to test the technology in the ‘real world’. The quality of recordings through a telephone, including mobile phones, is good enough for the programme, so they want to collect 10,000 voice samples by telephone. They have set up a project called the Parkinson’s Voice Initiative. They are asking people from around the world, both people with Parkinson’s and those without, to make a three-minute anonymous phone call to a computer which will record their voice. They have local numbers set up in various countries (including New Zealand). More information is available on their website parkinsonsvoice.org The NZ phone number is 09 984 9434.
SLEEP BENEFIT IN PARKINSON’S Some people with Parkinson’s report that their motor function is better upon awakening in the morning, which is contrary to what would be expected after a night without medication. This phenomenon, known as sleep benefit, has been studied but results have been inconsistent and there has been little new research in the last decade. A new study, published in the June issue of The Journal of Parkinson’s Disease, assessed a large sample of people with Parkinson’s and confirmed that some people experience sleep benefit, but found no significant variables between those who do benefit and those who do not. The study included 243 people with Parkinson’s who completed a comprehensive screening questionnaire covering a wide range of symptoms and characteristics. Sleep benefit was defined as a report of a “clear decrease in Parkinson’s symptoms after a period of sleep.” The study evaluated nocturnal sleep as well as daytime naps. Almost half (46.9%) of the people in the study experienced sleep benefit. There were no differences in demographic and clinical characteristics, including age at onset, duration of condition, or type of treatment, between those with and without sleep benefit.
There were no differences in depression, quality of life scores, memory, fatigue, or apathy. In addition, there were no reported differences in sleep quality. The study found that sleep benefit is not limited to night-time sleep. Regular daytime naps were taken by 98 participants. Of these ‘regular nappers,’ 20.4% reported sleep benefit after both nocturnal sleep and naps, 20.4% reported sleep benefit only after nocturnal sleep, and 13.3% of patients reported experiencing sleep benefit only after a daytime nap. The lead investigator commented that the results are based on a person’s subjective judgment of sleep benefit, and may be susceptible to misinterpretation. He recommends that future studies include objective measures of motor performance and longitudinal assessment of Parkinson’s symptoms. “If the subjective experience of sleep benefit is proven to be related to an objective improvement in motor function, this could have considerable clinical benefits,” he said.
MULTIPLE SYSTEM ATROPHY RESEARCH UPDATE The 4th International Congress on Multiple System Atrophy (MSA) was held in Toulouse, France earlier this year. MSA is an uncommon Parkinsonism condition with around 4 in 100,000 people being affected in New Zealand. MSA can have a number of symptoms in common with Parkinson’s and is often mistaken for it, especially in the early stages, although it is a separate condition. Parkinson’s New Zealand provides support to people with MSA as well as Parkinson’s. The Congress brought together international basic and clinical researchers to update on recent developments and generate ideas for future research. The programme included sessions on the pathogenesis of MSA, clinical presentation and natural history, imaging and biomarkers and treatment. The sessions on the causes of the condition focused on the protein alphasynuclein (which accumulates in MSA as well as Parkinson’s) and a specific type of brain cell, the oligodendroglia. Reports on three cohort studies, in France, Japan and Europe, were also presented. In these studies participants undergo regular clinical assessment and detailed clinical information is recorded. The aim is to build up a better understanding of how the condition progresses. Researchers reported that previously observed differences in the presentation of symptoms between Japanese and European participants were confirmed.
SOURCES: Neurological Foundation, sciencedaily.com, MSA Trust News, New Scientist, parkinsonsvoice.org, Parkinson’s Disease News, stuff.co.nz, Michael J Fox Foundation
Eating Well – Tips For Busy Carers Eating a healthy balanced diet is important for everyone. For a busy carer who needs to keep up their strength and mental alertness it is essential. But it is not always easy. If you’re always helping someone else with their food at mealtimes, then it can be easy to forget to eat yourself, or you might just end up picking at stuff. You can also fall into the habit of eating the same thing over and over again. So how to make sure you eat a varied diet and stick to a regular meal pattern? Here are some tips –
Eating • Eat at regular intervals, don’t postpone meals. Try to take the time to sit down to eat rather than eating on the go. It means you are more likely to eat a proper meal. Aim for three meals per day, including a proper breakfast. • Stock up on healthy snacks (e.g. fresh fruit, nuts and healthy crackers) and try not to purchase unhealthy ones. If you have five minutes, wash and chop some vegetables ahead of time, and then they’ll be ready for you for a snack or when it’s time to cook.
• When you just don’t have the time to cook, there is nothing wrong with an occasional frozen or ready-meal. Some of these can be high in fat and salt so it is a good idea to read the labels to find the healthiest options. The Heart Foundation website (heartfoundation.org.nz) has a useful section on ‘how to read food labels’. Their ‘tick’ is also a good guide to healthier choices. • Another option for purchased meals is Ezee Meals. These are home style frozen meals that are distributed through churches and social agencies around the country.
Planning • Some carers say that deciding what to cook can be a problem. If possible, it is helpful to plan a week’s menus before doing the shopping, then you have the ingredients to hand and don’t have to spend time thinking about what to cook every day. • It is also useful to keep a well-stocked pantry so if you haven’t managed to get to the shops you still have options. Aim to keep a stock of long-life ingredients such as different types of dried pasta, rice, noodles. Tins of food such as fruit (in juice), vegetables (especially tomatoes which make a very easy base for sauces) and fish are also good to keep on hand. Some fresh vegetables such as potatoes and onions can keep for quite a long time as well.
Cooking • Keep it simple. Healthy food does not need to be complicated. You can prepare easy, one pot meals like soups, stews, or curries. If you have a slow cooker these can be put on in the morning when you have some spare time. • You don’t have to make everything (or anything) from scratch. There are a lot of ways to reduce the time and
effort that goes into cooking a meal by using pre-prepared components such as frozen vegetables and meat already cut into strips for stir-frying. • Using a microwave can also speed up cooking time – even baked foods can be often be microwaved first to reduce the total cooking time. • When you do have time, cook up a storm. Make extra and freeze the remainder in meal size portions. These can then be heated up and eaten when needed.
Shopping • If you have access to the internet, consider online supermarket ordering and home delivery. Countdown supermarkets currently offer this service. While you will have to pay for delivery, it can be more convenient, especially if you do not have a car. Delivery charges drop as the value of the order increases (the bigger the order the less they charge).
NEED INSPIRATION? Cooking classes ‘Senior Chef’, is a programme through which older people learn cooking skills, share meals, and get to know one another. It is offered in a number of areas around the country. Local Age Concern divisions may also offer other cooking classes, including ones for men only. Ask your field officer about what is happening in your region.
Free recipes ‘Feeding our Families’ is a website that provides quick, low-cost food ideas, recipes, tips and information about healthy eating. Run by the Health Promotion Agency’s Nutrition and Physical Activity Programme, it is aimed at families with children; however, the information is applicable whatever your age. feedingourfamilies.org.nz The Senior Chef website also has recipes and food ideas. seniorchef.co.nz If you are not online, check out your local supermarket. Free tear-off recipes are usually available in store.
MORE HELP If you are finding food preparation is too much for you, help is available. You may be able to get assistance with shopping and cooking, or even have cooked meals delivered. Talk to your field officer about any problems you are having and what services you may be able to access.
Sleep Problems and Parkinson’s Sleep problems are a common challenge for people with Parkinson’s (and their carers). If you find that you are experiencing poor sleep, talk with your doctor about it because untreated sleep problems make coping with Parkinson’s all the more difficult and most sleep problems can be treated effectively. Why suffer? Sleep complaints can be grouped into three broad categories: sleep onset insomnia, sleep maintenance problems, and daytime sleepiness. These complaints are not mutually exclusive; i.e., many patients suffer from two or more of these upsets.
SLEEP ONSET INSOMNIA In some instances, sleep onset problems can be related to anxiety or to agitated depression, which if identified, can be the focus of treatment. Additional contributors to sleep onset insomnia may include restless legs syndrome and akathisia (i.e., inner restlessness) and dyskinesias. Talk to your doctor if you are experiencing these problems as they may be able to adjust your medication.
SLEEP MAINTENANCE INSOMNIA Sleep maintenance insomnia – sleep fragmentation – is the most common nocturnal complaint in people with Parkinson’s. Sleep fragmentation is a continuum ranging from unexplained awakenings to awakenings associated with quite specific night-time motor disturbances or the frequent need to use the bathroom. As their condition progresses, patients may experience “off” periods during the night. Immobility with subsequent inability to rise to use the bathroom is a common complaint.
EXCESSIVE DAYTIME SLEEPINESS Excessive daytime sleepiness is a common complaint of both early and mid-stage Parkinson’s patients and may be related to insomnia. Poor sleep at night may contribute to sleepiness during the day. Parkinson’s medications can also contribute to excessive sleepiness.
TREATMENT: The key to effective treatment is appropriate diagnosis. When a person with Parkinson’s or a family member/carer begins to notice sleep disruption, proper evaluation is very important. A careful interview of the person and his or her bed partner provides direction for further evaluation by a sleep specialist if the doctor or neurologist considers it necessary. (A sleep specialist conducts the quantitative studies necessary to evaluate for rapid eye movement (REM) sleep behavior disorder, sleep apnea, periodic limb movements, and some other sleep disorders. While some sleep specialists will accept walk-in clients, most prefer clients referred to them by a doctor as the initial consultation will have eliminated a number of possibilities as the root cause of the sleep disorder and the client will be well informed about the procedures involved in further examinations.) It is important that the family member/carer attends the initial interview with a GP as they may have an insight into the problem the patient lacks.
Your physician or neurologist will consider the impact that your medication may be having on your sleeping habits. While sleeping pills may break the cycle of insomnia; behavioural therapies are essential to alter the conditions that perpetuate it. Treatment should address possible underlying factors such as depression, anxiety, or pain. Cognitive behavioural therapy (CBT) teaches people how to recognise and change patterns of thought and behaviour to solve their problems and has proven very effective in conquering insomnia. CBT attempts to change a patient’s dysfunctional beliefs and attitudes about sleep. What works in many cases is to have a patient exercise more control over his or her sleep. If you feel the need to have an afternoon sleep, take it sooner rather than later, so as not to interfere with night time sleep. Standardising sleep helps a person adjust his or her homeostatic mechanism that balances sleep. If a person loses sleep, the homeostatic mechanism kicks in and will work to increase the likelihood of sleeping longer and deeper to promote sleep recovery. This helps a person come back to their baseline and works for the majority.
THE SLEEP ENVIRONMENT A patient can also establish more control over his or her sleeping environment. This could include prohibiting non-sleep activities in the bedroom, such as watching television, and reducing night time exposure to pets and/or their nocturnal movements. Sleep will come sooner, in a bed that has warm, easily movable top covers. Some people enjoy adding an electric blanket to the top covers, which they limit to the sheet, a single blanket and a thinner, summer-weight spread. Use satin sheets and pyjamas to help with getting in and out of bed and turning over. A soft night light, placed just outside the door of the bedroom, can illuminate the way to the nearest bathroom, while not being invasive. Besides making a midnight trip to the toilet safer, using soft night lights may have another, more subtle, benefit. Studies suggest the natural hormone melatonin promotes sleep efficiency and decreases night-time activity, and it seems for many people more melatonin equals better sleep. Levels of brain melatonin are related to light levels: melatonin levels increase in the dark and fall rapidly in bright light. Switching on a bright bedside lamp or room lights will reduce the levels of the sleep regulator significantly, making getting back to sleep more difficult.
PREPARING FOR BED Talk to your doctor about the best time to take sedating medications, so that you don’t get an increase in symptoms as you are trying to sleep. Be aware that sleep aides available without a prescription usually contain diphenhydramine, an anti-histamine, which blocks absorption of dopamine. Minimise beverages before bedtime to help avoid the need for frequent night-time urination.
NATURAL REMEDIES Valerian, used in ancient Ayurvedic medicine and by the Chinese, has been prescribed since ancient times for its calming and sleep-inducing properties. Once referred to as “the valium of the 19th century”, valerian was later used to treat shellshock victims in the First World War, and a number of studies have suggested that valerian may indeed promote sleep. Other natural remedies promoted as effective sleep remedies include camomile tea, lavender oil, hops, ginseng, and lemon balm. The synthetic version of the natural hormone melatonin, which influences sleep cycles, is available as a dietary supplement. Traditionally, it has been used by those whose circadian rhythms were thrown off due to travel or shift work, a use for which it has been proven effective. However, melatonin can also be used to treat secondary insomnia, or sleep problems that are symptoms of another disorder. 8
Acupuncture is often used in traditional Chinese medicine for the treatment of insomnia and other sleep disorders. This involves inserting very fine needles (sometimes in combination with a small electrical stimulus or with heat produced by burning specific herbs) into the skin at specific points in order to influence the functioning of the body.
OTHER SUGGESTIONS Increased muscle tension and intrusive thoughts interfere with sleep. Therefore, it is not surprising that techniques aimed at relaxing muscles and quieting the mind (meditation or bedside prayer) have been effective treatments for insomnia. Several studies show that regular meditation, either alone or as a part of a yoga session, results in higher blood levels of the sleep regulator melatonin. Studies also show that exercise can improve sleep. Even lowto-moderate intensity tai chi can improve the quality of sleep. However, although consistent exercise has been shown to improve sleep quality, most experts advise completing exercise at least three to four hours before bedtime to avoid interference with sleep. In recent years, there has been a huge growth in the availability of pre-recorded music for relaxation. Hundreds of CDs are available, offering recordings ranging from the peaceful--soft harps and the gentle patter of rainfall--through to the purely monotonous—the never-ending rumble of a spindryer.
Sleep is critical for wellbeing. Insomnia of one sort or another is surprisingly common in the general population, within the Parkinson’s community it appears to be very widespread indeed. While this may be a result of the condition, there is no reason at all to suffer unnecessarily as often the problem can be addressed directly and effectively. Talk to your doctor.
RESTLESS LEGS SYNDROME & PERIODIC LIMB MOVEMENT DISORDER Restless Legs Syndrome (RLS) frequently affects Parkinson’s patients. RLS has been called the most common movement disorder you’ve never heard of; its most common symptoms are a restlessness of the legs and an uncontrollable urge to move them. This is usually accompanied by strange sensations, which a lot of people describe as being like having bugs crawling under the skin. Others describe the symptoms as a creeping, a pulling, a tugging and a gnawing at the legs. Periodic Limb Movement Disorder (PLMD) involves an irresistible urge to move around during the night in order to get comfortable and is also quite common in people with Parkinson’s. Both disorders contribute to insomnia. Your doctor may be able to adjust your medication to help with this.
REM SLEEP BEHAVIOUR DISORDER REM Sleep Behaviour Disorder involves the acting out of violent dreams. REM sleep, or rapid eye movement sleep, is the form of deep sleep where the most intense dreaming occurs. Usually, as a person dreams during REM sleep, nerve impulses going to their muscles are blocked so they can’t act out their dreams. In REM behaviour disorders, that blocking of the muscle impulses no longer occurs. While estimates vary, about 50% of Parkinson’s patients have partial or complete loss of muscle paralysis (atonia) during REM sleep. This loss of the normal motor inhibition may lead to physical enactment of REM dreams, many of which appear to be violent. A patient may attack their partner while asleep, thinking they are an intruder. This acting out is dangerous both for the patient and their sleep partner. The danger associated with “acting out” may necessitate separate beds or even separate and secure bedrooms. You should consult your doctor as there are medications that may help this.
Keeping an oft-read book next to your bed to help you drift back to sleep after a mid-night awakening is preferable to switching on the television which can be too stimulating.
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WAIKATO’S FERAL CALENDAR – A GREAT GIFT IDEA
NELSON SEMINAR : HOW TO GET MORE OUT OF YOUR LIFE
Christmas came early to the Tauranga Division this year with the division holding a Mid Winter Christmas lunch in July. Part of the entertainment at the lunch was provided by the Brain Wave Singers Choir. The choir has gone from strength to strength since it was started in 2010. Each week a group of 30 people attend practices. Of these at least 60% have Parkinson’s or are carers.
On Saturday 25th August, the Nelson division held a daylong life skills seminar for members, carers, family and friends. The morning was taken up with a motivational workshop, How to get more out of your life, and in the afternoon a range of complimentary and alternative therapies (e.g.) accupunture, yoga and massage were showcased. The event attracted a large turnout and field officer Pam Grey reports good comments are still flowing into the office about the event.
WAIKATO The Waikato Division held a High Tea mid September to launch its annual calendar fundraiser. The 2013 Calendar, titled Feral New Zealand, was designed and photographed by division member Fran Allcock. Before her diagnosis, Mrs Allcock, who is an avid photographer, writer, and national award-winning poet, was an active “hunter’s wife” regularly going on trips to the South Island, Stewart Island and the United States. She still goes on trips and remains inspired by nature. The calendars are available from various book shops throughout the Waikato or from the Parkinsonism Society Waikato Office, 11 Somerset Street, Hamilton. (07 839 9038).
HAWKE’S BAY The Hawke’s Bay division held an Olympic themed meeting in August. The President, who re-titled herself for the day ‘President of the Parkinson’s Olympic Committee’ introduced Eileen von Dadelszen (Committee Chair) who roused everyone to join her in singing the New Zealand National Anthem followed by one athlete’s interpretation of Chariots of Fire on piano (with umbrella). Division co-ordinator Lee Patrice in her role as the ‘Chef de Mission of the games’ outlined the events and structure of the games and notified members that there would not be any drug screening procedures and members should pop whatever pills were necessary to help them achieve gold. Teams participated in ‘Slam Dunk’ basketball shots, ‘Shot Pot’ throw and ‘Drop Darts’. Each athlete also had an opportunity to trial a game of tennis or ten-pin bowling on the Nintendo Wii. The participants bought along a plate to share for afternoon tea and the afternoon concluded with award ceremonies for the presentation of medals and tulips and photograph opportunities.
CANTERBURY As part of its 50th Anniversary celebrations, the Canterbury Division will hold a Charity Golf Tournament at the Pegasus Golf and Sports Club on 12 October. The entry cost is $100 per player. This includes 18 holes of golf, golf cart (for the first 15 teams registered), dinner and prize giving. Registration forms and sponsorship details can be found at ms-pd.org.nz. The division is also busy promoting is its 50th Anniversary Commemorative Cookbook, called DUO. Amongst the 200+ pages of recipes from division members and some of Canterbury’s top restaurants and cafes, are contributions from Jo Seagar and the 2010 NZ Master Chef winner Brett McGregor. Pre-order forms are available on ms-pd.org.nz.
BOB KUHN (LEFT) WITH LLOYD JENKINS
BOB KUHN During July Parkinson’s New Zealand hosted a Canadian visitor called Bob Kuhn. Bob was diagnosed with Parkinson’s in 2006, when he was 53. In May this year he set off on a trip taking in 16 countries to meet people who are part of the worldwide Parkinson’s community and record their stories. Bob was particularly interested in our network of field officers. Lloyd Jenkins from the Auckland division did a wonderful job of looking after Bob. During his visit, Bob appeared on the Breakfast TV show and the Chris Laidlaw radio show. You can read about Bob’s trip on his blog positivelyparkinsons.blogspot.com
Get Going Parachute Jump GET GOING...
KIMBERLY MCDERMOTT TAKES A LEAP OF FAITH
If you or someone you know would like to raise funds for Parkinson’s New Zealand, please contact Louise on 04 472 2796 or 0800 473 4636 or email@example.com. The possibility of events you could undertake are endless and we are always here to help you with your fundraising efforts.
ENJOYING THE VIEW
When Dunedin woman Kimberly McDermott wanted to take on a challenge to raise awareness and funds for Parkinson’s New Zealand, she referred to her “must do” list and decided to take a leap of faith. A 16,000 feet leap from a plane above Kerikeri. “A very close friend of mine has early onset Parkinson’s and the jump seemed like an excellent opportunity to not only fundraise for the cause but to raise awareness about Parkinson’s in the process” said Kimberly. Raising awareness about Parkinson’s was important to Kimberly as she has found “when people think about Parkinson’s, they think of grandparents, but that’s not always the case. I wanted to let people know this”. Once she had made the decision to do the parachute jump, Kimberly spent three busy weeks reading up on Parkinson’s, finding sponsors and signing them up. “The Fundraise Online website made things really easy and I had a great response from the people I approached.” Did she have any second thoughts about actually going ahead with the jump? “Basically I cornered myself,” Kimberly says, “Once I’d said I’d do it for Parkinson’s I was committed.” The day of Kimberly’s jump also happened to be her 40th birthday and the weather was atrocious. “It was ghastly. It was really wet and windy, but the guys at the airport said to wait for a weather window and that if anybody was going to jump that day it was going to be me.” The clouds eventually parted and the jump was on. Kimberly was harnessed to her instructor and wriggled aboard the jump plane with two other couples. It took half an hour to reach the jump height of 16,000; because the aircraft wasn’t pressurised, oxygen masks were required. When the moment came to leave the plane, Kimberly’s instructor told her to cross her arms and just surrender to it. “It still felt like a very unnatural thing to do.” The free fall was like being in a wind tunnel: “incredibly noisy, incredibly cold, and extremely windy.” After the canopy opened though, everything went quiet and Kimberly got to enjoy the view and the manoeuvres her
instructor began to pull. The whole descent took a minute; the smile on Kimberly’s face lasted the rest of the day. “Afterwards, on my flight from Kerikeri to Auckland on the way home, the pilot announced they had reached their cruising altitude of 12,000 feet. I had the thought that I was glad I hadn’t seen a jet pass below when I started the jump.”
Editors note: Kimberly raised over $1,200 for Get Going which is a fantastic result on top of the awareness raising she also undertook.
A SOFT VOICE IN A NOISY WORLD?
– The Zavox Reo
The Zavox Reo is a personal voice amplifier designed to reduce vocal strain and amplify the softest voice. It has been developed especially for clients who have Parkinson’s or a condition that makes speaking loudly difficult. The Reo is compact, stylish and sleek, worn around the waist or carried over the shoulder - no matter where you are, your Zavox Reo is always with you! Features • Five hours of continuous talk time • 60 hours of standby time • Audible feedback during operation • Automatic volume reset • Alarm to summon help • Large tactile push buttons • Lightweight and sleek • Stylish carry bag • Discrete unilateral ear microphone • Around the waist or over the shoulder use Price $563.50 incl GST Order your Zavox Reo now by phoning Zabonne Ltd on 0800 351 151 firstname.lastname@example.org • www.zabonne.co.nz Zabonne Ltd , PO Box 69203, Glendene, Auckland 0645
Get Going Goes International FOR MORE INFORMATION...
If you, a friend or a family member may be interested in Getting Going internationally, please contact Parkinson’s New Zealand on 04 472 2796 or email email@example.com or Discover Adventure on 021 445 871 for more information.
Over the past year people have run, cycled, and jumped out of an airplane to raise money for Parkinson’s New Zealand as part of the Get Going for Parkinson’s programme. Now we are offering the chance to not only fundraise for Parkinson’s but to take part in a once-in-a-lifetime overseas adventure, either on foot, by bike, or on horseback. Whether you fancy trekking the Inca Trail to Machu Picchu, or horse-trekking in Mongolia, you can choose from a wide range of incredible fundraising adventures. Whether you sign up on your own or in a group, you will quickly bond with all those on your challenge and gain great memories and some lifelong friends too. By signing up to one of these trips not only are you getting an incredible experience but you will be helping our projects and making a difference to the lives of people with Parkinson’s.
Challenges are operated by experienced tour operator Discover Adventure which has been running such events since 1994. They run similar events for Parkinson’s UK. There is full back up and support from English speaking leaders and a doctor as well as local crew. They have an award for Responsible Tourism and you will be in safe hands. Trips range from 10-20 days in duration and are rated moderate, tough, or extreme and are available in Africa, Asia, Europe, the Middle East, and Central and South America. You have to be over 18 to take part but there is no upper age limit. Registrations for challenges running in 2013 or 2014 are now open. More information on upcoming trips is available or their website discoveradventure.co.nz.
HOW IT WORKS
You have the choice of either paying for your own tour cost and fundraising as much as you can for Parkinson’s. Or, choose the fundraising option and set yourself the goal of raising the minimum sponsorship target and Parkinson’s will pay your tour cost for you. We’ll help you get started on your fundraising and Discover Adventure will look after you from start to finish.
The James Russell Lewis Trust The Iris & Eric Nankivell Charitable Trust
WE NEED YOUR HELP We need your help to ensure that people newly diagnosed with Parkinson’s have the support and resources they require as they learn about and come to terms with their diagnosis. Being diagnosed with Parkinson’s is life changing. For many it comes as a shock. For others it provides clarity.
When the specialist said ‘you have Parkinson’s I actually felt a huge relief, because finally someone recognised the whole picture of what was happening to me, and finally we had an answer. But whatever their initial reaction, the life of a person newly diagnosed with Parkinson’s has changed. They are embarking on a journey with many ups and downs. However it is a journey that they don’t have to travel alone. Parkinson’s New Zealand can be, and wants to be, there to support people right from the start. A gift from you can make sure that we are.
PLEASE MAKE A DONATION TODAY TO HELP US PROVIDE RESOURCES AND SUPPORT TO PEOPLE NEWLY DIAGNOSED WITH PARKINSON’S.
Yes! I want to make a donation today to help people with Parkinson’s: Name: ___________________________________________________________________________________________ Address: _________________________________________________________________________________________ 12
Phone number: ___________________________________ Email: ____________________________________________ Here is my gift of: $25 provides information packs for two newly diagnosed people $50 covers the cost of 30 people calling our free phone line for advice and information $100 helps pay for training for a field officer $ _____________ my choice CALL OUR CREDIT CARD DONATION HOTLINE: 0800 473 4636 (answerphone after hours) My cheque is enclosed made payable to Parkinson’s NZ Please charge my
Card number: ___ ___ ___ ___ / ___ ___ ___ ___ / ___ ___ ___ ___ / ___ ___ ___ ___ 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. Remember donations over $5 are eligible to receive a tax rebate of up to 33.3%.
Thank You! THE PARKINSONIAN
Published on Oct 17, 2012