The Parkinsonian The Quarterly Magazine of Parkinson’s New Zealand March 2012
Vol: 15, No. 1
NEW PHYSIOTHERAPY APPROACH FOR PARKINSON’S Last year Christchurch physiotherapy practice On-the-Go Physio began to offer a new movement training programme-LSVT-BIG—specifically designed for people with Parkinson’s. The programme requires participants to focus on one goal and one goal only: to think BIG and make the biggest movements with the most effort they can muster. Conventionally, physiotherapy for Parkinson’s has aimed to improve flexibility, strength, and balance, so things like walking, getting up from a chair, or turning over in bed, become easier. This approach breaks down each action into smaller discrete parts but requires patients remember multiple instructions for each one. What was once automatic becomes a feat of memory, concentration, and will. The new approach is based on the Lee Silverman Voice Treatment (LSVT) and in the same way that system incorporates sensory awareness training to help people with Parkinson’s recognise that their voice is too soft, LSVT-BIG teaches patients to recognise how much physical effort is required to get something done. In Parkinson’s, the body’s proprioreception system – the feedback system that returns information to the brain when the body moves (or is moved) and allows subsequent adjustments to be made – goes awry, and abnormal movements feel normal and normal movements feel abnormal. “The LSVT-BIG programme aims to recalibrate the system,” says On-the-Go physiotherapist Tara Martin.
they don’t understand why because they don’t feel the smallness of their movement. “LSVT-BIG allows people to experience the feeling of bigness, of over-exaggeration... like being an actor on stage.” Once this recognition is achieved through repetition after repetition of the foundation exercises, components of these base exercises are used to develop a set of functional exercises aimed at addressing the specific goals of each patient. Goal-setting is a key part of the programme Tara says, as each patient has different challenges. The first patient Tara treated with the programme was 71-year-old Jagjit (Jimmy) Dillon, who was first diagnosed with Parkinson’s in 2008. Mr Dillon wanted to walk indoors without shuffling; sit on the floor and be able to get up again; to improve the fine motor movements of his right hand and fingers, which were affected by tremor; and to be able to walk uphill more easily, with less shortness of breath Listening is a vital part of establishing the functional exercises, Tara says: “A key part [of establishing goals] Article continued next page
The programme has three components: a general set of prescriptive exercises, a set of functional exercises specifically designed for each patient, and a walking programme aimed at improving gait and reducing falls. The general exercises address the most common problems people with Parkinson’s have and are the foundation of the programme. The five routines demand coordination and balance and involve every part of the body. The exercises move patients from the closed, hunched position people with Parkinson’s typically adopt and open them up into a more extended posture. “The exercises are about making large movements with every part of the body,” Tara says. One of the problems with Parkinson’s, Tara says, is its impact on the sensory system. It’s not that people can’t make a movement or that they are too weak, it’s that they don’t fully feel their movements or posture. “They may not necessarily feel small or cramped or hunched. They just know they can’t do things and
He’s got the moves—Jagjit (Jimmy) Dillon practices LSVT-BIG.
NEW PHYSIOTHERAPY APPROACH FOR PARKINSON’S is finding out what the real problems are. Sometimes therapists don’t spend enough time finding out what the real issues are. A lot of the time people with Parkinson’s will say ‘I know what the problems are, I just don’t know how to fix them.’ That’s a big part of it, listening. Really listening. “Everyone’s Parkinson’s manifests itself in different ways.” On-the Go Physio works with patients in their own homes, an approach Tara believes makes a lot of sense. “If we want to work on a problem like getting out of bed, we can work with the patient’s bed. If we want to work at sitting at the dining table and pulling the chair in, we do it with that table and that chair.” The third part of LSVT-BIG is LSVT-BIG Walking. Most people who seek the help of a physiotherapist with their Parkinson’s present with some sort of walking problem, Tara says. “What we are learning about Parkinson’s is that broadly, people with the condition fall into two groups. Some people have a tremor dominance but can go for a long time without having any real problems with their gait and walking. Others have more problems with gait apraxias from an early stage. They typically have a shuffling gait but may not necessarily have a tremor.” Gait problems involve issues of amplitude and can respond well to the LSVT-BIG approach. In LSVT-BIG Walking, the patient is asked to concentrate on taking big steps, exaggerating their arm swing, and keeping a big upright posture. If you say ‘show me some really gigantic big walking’, most of the time the walking goes from a Parkinson’s shuffle to normal. “Very rarely does it go to a Ministry of Silly Walks type gait. A patient may feel silly because (to them) it feels wrong but it isn’t.” One of the great beauties of the LSVT-BIG approach, Tara says, is that its subtle complexity is presented in a very user-friendly way that is readily transferable into everyday life.
Rather than struggle with a complex series of instructions and cues, a person using the LSVT-BIG training needs only remember a single word to cue themselves to operate in the way they have practiced. Similarly, a carer looking after a patient with cognitive difficulties need only remember a single cue, rather than struggle with a host of cues and strategies. “You jump over a whole host of cues... It’s all LSVT-BIG.” Another of the benefits of the LSVT-BIG approach is that it appears to have a longer-lasting impact than other approaches, Tara says. It has been observed that people with Parkinson’s do well when they are in a programme and are being cued by a therapist, but their performance typically drops off quite quickly afterwards. While it’s still early days (LSVT-BIG was developed about five years ago), the few studies that have been done assessing the efficacy of the approach show LSVT-BIG participants sustain their improvements for longer. US research indicates LSVT-BIG training leads to faster walking, with larger steps; improved balance; and increased trunk rotation. Multi-tasking becomes a possibility. After years of break-dancing through life, trial patients found themselves in control of their bodies. Tara believes the success of the programme may be due to its recruitment of the brain’s (and the wider nervous system’s) ability to change in response to signals – its neuroplasticity. “It used to be thought people with Parkinson’s didn’t learn movement strategies, that they just relied on cues. But growing evidence suggests they can learn, particularly with intensive approaches like LSVT-BIG, but it takes them longer.” Intensity is the key. LSVT-BIG is much more intensive than conventional programmes – four one-on-one 60-minute sessions per week for four weeks – and involves many repetitions of the core movements used in daily life. Participants are also required to do “homework” between their daily sessions. This intensity is critical to attaining optimal results, Tara says. “If I saw patients once a week, it would take them years to get results.”
With Parkinson’s, everything becomes a feat of concentration. The body’s ‘autopilot’ ceases to function properly and becomes easily waylaid, overloaded, distracted. Crossing a road, for example, involves not only taking steps but also coping with the anxiety of approaching traffic, ambient noise, and conversation.
And the key to sustaining the required level of intensity is motivation. Part of this motivation may be financial – the treatment isn’t publicly-funded and is relatively expensive.
To foster this sort of multi-tasking, Tara had Jimmy perform simple tasks when they were out walking, such as remembering to cross the road whenever a certain number letterbox appeared.
“It isn’t a silver bullet by any means but I feel that LSVTBIG is something you can use over a period of time. It’s like investing in a really good tool that you can use over and over again, as opposed to buying lots of cheap tools.”
Conventionally, a person with Parkinson’s may need to rely on a series of cues to perform what should be a simple task. LSVT-BIG simplifies matters by replacing multiple cues with a single command —Think LSVT-BIG.
Who should do it? Anyone with Parkinson’s has potential to make improvements with the LSVT-BIG programme; however, some of the best results seem to be achieved by people in the early stages of the condition, Tara says.
Tara suggests the programme should be seen as an investment. Besides improving the quality of everyday life, the exercises constitute a life-long maintenance programme.
NEW PHYSIOTHERAPY APPROACH FOR PARKINSON’S
JIMMY’S STORY 2008 wasn’t a good year for Jagjit (Jimmy) Dillon (pictured front page). He was diagnosed with Parkinson’s. The following year didn’t get a whole lot better. First he suffered a perforated hernia, then he was run over. But things improved: After learning to walk again, Jimmy took up Tai Chi and joined a cooking class, a laughing group, and a communication maintenance group. He also kept up to date with developments in the Parkinson’s field and when he learnt Christchurch physiotherapy practice On-the-Go Physio was about to offer a new, highly intensive movement programme – LSVT-BIG – specifically for people with Parkinson’s, he signed up. Before he met Tara Martin—the only physiotherapist in New Zealand trained in the technique – for a formal assessment, Jimmy completed a questionnaire outlining what he hoped to achieve by doing the programme. “I wanted to live independently; cook my own food; do my own cleaning and shopping; and be able to communicate orally, by writing, and by using a computer.” Working under Tara’s supervision and by himself, Jimmy completed the programme and achieved almost all of his goals. (The hint of a shuffle remains.) Before starting the programme, Jimmy was just starting to stoop, something the programme seems to have reversed. He believes doing the course was the best thing he could do to maintain his present fitness and reduce the severity of his symptoms in the future. The exercises were “doable” Jimmy says, which he thinks is important. He describes the routines as being
like an exaggerated but simpler form of Tai chi. Every morning he spends 15 minutes doing his LSVT-BIG exercises, something he sees as necessary to maintain the gains he made during the instruction. What’s required is consistency, he says: “It’s easy to slip back into old habits. You have to maintain what you’ve been told to do.” The LSVT-BIG approach is a form of mindfulness, he says, and it can be applied to everything. “I had difficulty cutting up meat, for example, but I practiced doing it with larger movements and now I can do it. I can peel potatoes, which gives me independence.” Jimmy has taken up walking again and finds his LSVT-BIG training helps him get back into the rhythm of things when his right arm stops swinging. A longtime runner, he plans on pulling on his running shoes again, just as soon as his legs are fully healed. (He thinks running may actually be easier than walking but is bidding his time till he can test his theory.) The success Jimmy has enjoyed from the programme may be due in no small part to his positive engagement with his condition and motivation not to let it rule his life. Besides his LSVT-BIG exercises, Tai chi, and daily walks, he regularly participates as a subject in academic studies of Parkinson’s, attends various group activities, and is about to join a therapeutic music group. Physiotherapist Tara Martin will talk about LSVT BIG at the UPBEAT conference in Auckland 23-25 March. Contact Louise at Parkinson’s New Zealand for details. (04) 474 2796.
A WORD FROM THE CHIEF EXECUTIVE TENA KOUTOU KATOA Welcome to the first issue of The Parkinsonian for 2012. We are starting off BIG this year! Tara Martin, the physiotherapist in our lead story is speaking at the UPBEAT Weekend in Auckland in March and I am even more interested to hear her after reading the story. I am pleased that we could also bring you an update on Dr Megan McAuliffe’s communications research. As part of our support for Parkinson’s research, we try to help researchers find study participants, often by publishing invitations in the magazine. So it is good to hear about what happened next.
help us do more this year. Remember that donations to registered charities (which we are) are tax deductible. That means that for any gift you make before the tax year ends on 31 March, you can claim a tax credit amounting to 33.3% of the amount of the gift. Just ensure that you include your name and address so we can send you a receipt. On a personal note, I’d like to thank everyone for their congratulations on the birth of my daughter. My family and I appreciate your kind thoughts and words.
I know you all agree that supporting research and education is a vital part of Parkinson’s New Zealand’s work. I hope you will consider making a donation to
NEWS AND RESEARCH New estimates on the prevalence of Parkinson’s Both Parkinson’s Australia and Parkinson’s UK have recently produced new estimates of the number of people living with Parkinson’s in their countries, and how they expect that to increase in the next two decades.
Parkinson’s in Australia Parkinson’s Australia issued “Living with Parkinson’s Disease - update” in October 2011. The report by Deloitte Access Economics is an update of their 2007 report “Living with Parkinson’s Disease - Challenges and positive steps for the future”. Its primary focus is the economic impact of Parkinson’s, particularly the cost to the health system and Australian economy. The report also looks at the prevalence of Parkinson’s in Australia. They conservatively estimated that in 2011 over 64,000 Australians were living with Parkinson’s. This equates to 283 per 100,000 in the total Australian population or approximately one in every 350 people. The incidence was also found to be increasing. They estimated that there has been a 17% increase in the number of people with Parkinson’s over the past six years (2005-2011). This is expected to continue with projected average growth of 4% per year over the next 20 years. The increase reflects the ageing of the Australian population. Other estimates of interest in the Australian report include – • 19% of Australians with Parkinson’s are of working age (under 65) • Among the population aged over 50, there are 857 people with Parkinson’s per 100,000
Parkinson’s in the UK Parkinson’s UK’s research into the incidence of Parkinson’s in Britain used the General Practice Research Database (GPRD) to estimate the number of people with Parkinson’s. The GPRD is the world’s largest database of anonymous long-term records from GPs. In 2009 it covered 7.2% of the UK population. page 4
The study estimated that there are currently 127,000 people with Parkinson’s in the UK, which is 7,000 more than previously thought. Parkinson’s UK believe this may still be an underestimation as it is based only on people who have been diagnosed.
diabetes, the excessive use of alcohol and nutritional deficiencies (especially low vitamin B12 levels). Neuropathy also appears to be more prevalent in people with Parkinson’s. It has been suggested that this may be related to levodopa therapy and consequent vitamin B12 deficiency.
The UK is also predicting a large increase in the incidence of Parkinson’s as a result of its ageing population. By 2020 they predict that there will be 162,000 people with Parkinson’s, which is an increase of 28%.
A new study reported in Neurology compared the incidence of the condition in people with Parkinson’s with a control group. They found a big difference between the groups. In the Parkinson’s group, about 38% had neuropathy, compared to 8% in the comparison group. They also compared vitamin B12 levels. Average B12 level was much lower in the Parkinson’s group and there was a relationship between low vitamin B12 levels and the presence of the nerve problem. This favours B12 deficiency as the most common cause of neuropathy in people with Parkinson’s. While the authors felt their results support the fact that this may relate to levodopa therapy, they did not find a clear link between the duration of treatment with levodopa and the occurrence of the neuropathy.
Other estimates of interest: • In people over the age of 80 the incidence of Parkinson’s is almost one in 50, compared to one in 500 in the whole population. • 55% of the UK’s Parkinson’s population are men.
Inhaled levodopa A US biotechnology company, Civitas Therapeutics Inc, is developing an inhaled form of levodopa. The idea is that the drug can be absorbed faster and more consistently when delivered into the lungs rather than swallowed. However, it is not intended that the product will replace oral levodopa but rather be used intermittently for relief from motor fluctuations. The product is still in the very early stages of development. The company was awarded a Michael J Fox Foundation grant for clinical studies through proof-of-concept in late 2011 and recently announced positive results from a Phase 1 clinical trial (looking at safety, tolerability, and absorption and distribution of the administered drug). The company is using an inhaler previously developed for an inhaled insulin product. While the insulin product made it to Phase 3 trials it was never marketed, mostly for commercial reasons (a similar product failed to sell as well as expected).
Neuropathy and Parkinson’s Neuropathy is a neurologic condition that affects the nerves in the feet and hands. It starts gradually, and over a long period of time, gets worse. The most common causes are The Parkinsonian
Promoting a healthy brain and mind in Parkinson’s A study at the University of Sydney’s Brain and Mind Research Institute is examining the efficacy of computerbased brain-training exercises to improve memory and thinking skills (cognition) in people with Parkinson’s. The study involves a seven-week programme of computer ‘brain exercises’ twice a week. Associate Professor Sharon Naismith, a neuropsychologist and Director of the Clinical Research Unit and Healthy Brain Ageing Team at the Institute says it is well established in many conditions of the brain and mind that ongoing and challenging brain exercise is associated with improved cognitive functioning, and there is no reason to think that in Parkinson’s the brain is not capable of similar neuroplasticity— of undergoing continued growth and reorganisation in response to stimulation. However, few studies have examined this in Parkinson’s. Many people world-wide use computer-based training to improve March 2012
NEWS AND RESEARCH memory, mental fitness, and intelligence levels, but the efficacy of such brain training is still being debated. Some researchers believe there is little evidence such exercise translates into improvements in general cognitive function rather than merely improving a person’s ability to do the specific mental tasks in the training. Proponents of brain training say speciallyconstructed exercises for brain fitness do work, particularly attention-based visual training, and are more effective at improving cognitive function than recreational mental activities, such as learning a new language, doing crosswords, or playing games. Whatever the case, neuropsychologists such as Associate Professor Naismith warn computer-based brain training is unlikely to be a silverbullet for people with Parkinson’s and a more holistic approach is required to improve brain ageing. Recent research suggests not only is cognitive activity important for brain health, but so is social activity and exercise. Moderately intense levels of aerobic exercise and muscle resistance training promotes levels of important brain protecting chemicals called neurotrophins. Associate Professor Naismith also emphasises the importance mental health plays in healthy brain ageing. Factors such as depression, anxiety, and sleep disturbance, have been associated with decline in memory and thinking skills over time and may trigger the release of adverse chemicals called glucocorticoids, which appear to be harmful to brain structures, particularly those supporting memory. The Sydney study combines computer-based brain training with educational sessions targeting the modifiable risk factors for cognitive decline. Modifiable risk factors include vascular risk factors (e.g., high blood pressure, heart disease, high cholesterol), lifestyle risks (e.g., exercise, diet, cognitive activity) as well as changes in mood and sleep. The sessions are delivered by a variety of health professionals including neuropsychologists, psychologists, neurologists, exercise physiologists, and nutritionists. March 2012
If the programme is proven to be associated with improved memory, as well as improvements in mood and quality of life, it may be delivered more widely.
New possible blood test for Parkinson’s Researchers at the University of Lancaster believe they may be on the way to developing a blood test for Parkinson’s. They have found that phosphorylated alpha – synuclein (one of the proteins found in Lewy bodies) can be easily detected in blood. Since their analysis showed that the blood of people with Parkinson’s had significantly higher levels of the protein, this makes it a potentially useful biomarker for Parkinson’s disease.
Parkinson’s – first moving pictures Medical journal The Lancet recently featured some early films of people with Parkinson’s and put them in context with a brief overview of the history of clinical images of Parkinson’s. The first clinical images of patients with Parkinson’s were drawings made by Jean-Martin Charcot and his associates at the Salpêtrière hospital in Paris. Charcot had a major role in defining Parkinson’s as a distinct neurological disorder and it was he who proposed its current name. In 1878, Charcot opened a photographic laboratory at the Salpêtrière. Albert Londe, a skilful photographer, became the key figure in this department. Around 1895, the world discovered cinematography with the first public screening of films in Paris. Although the French medical establishment viewed this new medium with a degree of suspicion, Londe experimented with the new technique and filmed at least one patient with Parkinson’s. Unfortunately only isolated blurred frames have survived. These early films were made of cellulose nitrate, a highly unstable material, which is why most films from the beginning of cinematography have been irretrievably lost. The oldest surviving film of patients with Parkinson’s was taken in Romania The Parkinsonian
by Gheorghe Marinescu. It is a short sequence of 12 seconds. A later collection of archival neurological films has survived. It is the work of Belgian anatomist and neurologist Arthur Van Gehuchten. At the beginning of the 20th century, Van Gehuchten recognised the potential of cinematography for capturing signs of neurological conditions as a support of the medical record. He decided to make a comprehensive cinematographic collection about patients with nervous disorders, and, from 1905 until his death in 1914, he filmed intensively. An important part of this collection is kept at the Cinematek (Royal Belgian Film Archive) in Brussels. It amounts to about 3 hours of short sequences, ranging from a few seconds to a few minutes. It includes film clips of 12 patients with Parkinson’s. These films have been made available online. The wellpreserved films can be viewed on the Arthur Van Gehuchten website www.arthurvangehuchten.be (requires registration to view). The Lancet website also contains six of the clips (www.lancet.com search on Van Gehuchten). Sources: Parkinson’s Australia; Parkinson’s UK; Parkinson’s NSW; www.civitastherapeutics.com; The Lancet; Neurology
THE PARKINSON’S AUSTRALIA NATIONAL CONFERENCE BRISBANE 13TH & 14TH JULY 2012 Topics to be covered include: advances in surgical, drug, and exercise treatments; depression and anxiety in Parkinson’s; nutrition and Parkinson’s; the Australian Parkinson’s Nurse Specialist Service; and speech therapy. The keynote speakers are neurologist Professor Barry Snow and Professor Tipu Aziz, Professor of Neurosurgery at the University of Oxford.
FACT SHEET Telling people you have Parkinson’s You have recently been diagnosed with Parkinson’s. How do you tell your friends and family? It is not an easy task. Not only do you have to deal with the new emotions you are feeling, but you also have to cope with the reactions of the people you are telling. This can result in added stress, which can increase your own fears and anxiety.
Do you have to tell everyone? Many people feel the need to announce their ‘situation’ or ‘news’ to everyone around them when they are first diagnosed. While feeling that everyone should know is a normal response, it’s not always best. Some people may want to hide the news from everyone. This is also a normal reaction but adjusting to the news is something that is ultimately best done with the support of others. You may find that it is best to only tell those who you know will offer positive support, such as immediate family and very close friends. Friendships can sometimes be difficult enough to maintain when you are healthy and in good spirits. But it is even more difficult when you do not feel 100% - when you are tired or stressed, your mood is down, or you are have anxieties about your condition, your future and that of your family. It’s important to remember you have control. While you can’t control how people react to your Parkinson’s, you can control when and how you tell them. You can choose to be proactive and positive in your approach to others. While it may be hard, actually saying “I have Parkinson’s” can be a good thing. Saying it aloud may release emotions that you may have been suppressing. Telling someone makes the condition more real; it is validating. Although it may be difficult, it is very therapeutic, because you are admitting you are living with an illness. This is the first step in coping. Don’t apologise for your disorder. It’s not your fault. It happened, and now all of those around you need to come to terms with it. If certain people have difficulty accepting it, remind yourself that this is their issue for them to contend with, not yours. Stress that while things may have changed, fundamentally you are the same person you always have been and don’t require special pitying voices or deep, meaningful looks and embraces. Your essence is the same. You are not defined by your diagnosis – it is simply a part of your life that you are adjusting to living with. Let your friends know that what you need is empathy not sympathy. What you need is someone who can put themselves in your place and see what your needs are. Often, you may simply need someone to listen to you, not someone to go around fixing anything. What you
don’t need is someone who is just going to add to your burden of gloom. For some people, crying together may be a very bonding and supportive activity, enabling a person to feel less lonely in their grief and shock and sorrow; but for others, dealing with other people’s tears may be burdensome and one of the last things they feel like doing. Of course some people may react, at least initially, with grief, anger and disappointment. Accept that. These reactive stages, however, should not go on indefinitely. Adults should have the grace not to burden you with unnecessary outbursts of anger or denial. Being surrounded by people whose anxieties and fears are obvious and excessive will not allow you to cope in a healthful manner. Parkinson’s is now a fact of your life and it must be accepted. How you are coping is more important, not how they are dealing with your condition. Talk. It is amazing how effective talking can be. Sharing feelings and fears can resolve a million problems. Sharing your feelings with one another will defuse any resentment that tends to build in reaction to any pain and stress you both feel. People may automatically think the worst. You can help them understand by educating them about your condition. Parkinson’s New Zealand has leaflets about the condition which you may want to give them to read. The more at ease and knowledgeable they are, the more effective support they can give to you. They need to learn that you are still you and that the relationship can still go on. Give your friends clear facts about Parkinson’s. Tell them that you want them to help you maintain your independence for as long as possible, which will likely mean many years after you received the diagnosis. Tell them that as time passes you will likely face greater challenges from the condition but that you wish to maintain the relationship. In short, people around you need to come to terms with your Parkinson’s and its implications for the relationship. Once they do so, the relationship will grow and may even nourish both of you just as it always had done.
Workplace disclosure or non-disclosure - that is the question Parkinson’s is different for each person and it may never progress to the point where you have to consider giving up work prematurely. However, this may become reality for some. For employees in this situation who need to work or want to work, the question of how best to hang on as long as possible is critical. Don’t be in a rush to make major decisions. Many of us identify closely with our jobs and careers and giving them up can be painful. Besides concerns about one’s status and identity, deciding to leave work involves
TELLING PEOPLE YOU HAVE PARKINSON’S decisions about one’s financial future. And that of the family. Explore your options. For example, is going parttime an option if full time work becomes too difficult? At some point though, you are going to have to disclose your condition. Exactly when to do this is a tricky question. Timing, as they say, is everything: deciding when to tell your employer that you have Parkinson’s is a very personal decision and depends very much on circumstances. On one hand, you may fear disclosing your health status will be bad for your career. You may be concerned your employer will favour healthy workers over you. You may wonder how willing your employer will be to make adjustments in job duties or deadlines. You may also be afraid disclosure will mean your co-workers and supervisors perceive you as less able to do your job well. (Or you may fear their pity.) On the other hand, non-disclosure may mean you lose out on any protection, accommodations, and time off provided under the law. Non disclosure may mean your co-workers become resentful at having to make allowances for you without understanding the reason or it may unfairly rob them of them of the opportunity to understand the situation and make some helpful changes. In some circumstances you are obliged to disclose your condition. The Employment Relations Act (2000) requires that employers and employees deal with each other in good faith, which means dealing with each other honestly and fairly and openly. If your job poses any hazards, openness and honesty are crucial, not only for your own wellbeing but that of your co-workers. Your employer may need to know of your condition to help him or her fulfil their health and safety obligations toward you as an employee. Under the Human Rights Act, it’s unlawful to discriminate on the grounds of a disability in employment. Until you decide one way or another, perhaps the best advice to follow is to be as public as you need to be and as private as you want to be. But if and when you do decide to disclose your condition, approach the conversation with the boss with the same level of professionalism as you would with any other work-related matter. Bide your time until you know what you want and can talk specifics. Do you need a change in role? Shorter hours? To work part-time or work from home? Present your boss with solutions not problems. Show that you’ve put some serious thought into maintaining the quality of your input and minimising disruption to the work place. Research what support is available for both you and your employer. One example of this support is Workbridge (workbridge.co.nz). Workbridge is a professional employment service for people with all types of disability.
Besides matching jobseekers and employers, Workbridge also administers three training and employment support funds available to disabled people on behalf of the Ministry of Social Development. This funding is available to help with any additional costs directly relating to a person’s disability when entering or retaining a job, entering training, or commencing self employment. Explain what’s going on and provide reassurances that the condition is manageable. Parkinson’s New Zealand field officers may advocate on your behalf. They are well qualified to explain what Parkinson’s is and what it means in employment terms. Discuss privacy issues if you and your employer agree to formally let other people know about your disability. You may not be able to control the course of your Parkinson’s, but you can control the direction you take and the choices you make regarding your condition in the workplace.
Telling children you have Parkinson’s It is never easy to tell children bad news. Most adults have a natural instinct to protect the feelings of children and often do so by omitting information. Many psychologists agree that this hurts them more in the long run, so being straight forward and honest is best. It’s important to let your children or grandchildren know that you have Parkinson’s and it’s important that you be honest about what that means. Assume they don’t know what it is and explain the physical process of how it develops and what can be done about it. However, bear in mind that children understand best when they can see the whole picture, not just little pieces. Perhaps you may care to delay saying anything until you are aware of the extent of your condition and what course of treatment you will be taking. Remember to be confident. Your optimism will reassure them. It’s also important for them to know that your condition is not contagious, and it won’t affect them physically. This may even be one of the first questions they ask you. They are not being selfish. Children often hear about people catching a cold or the flu and naturally assume it may be the same for a conditions such as Parkinson’s. Children also want to make sure that you will still be available to them emotionally and to continue any other roles that you have with them. You need to reassure them that you will still be there for them, and be honest about any changes in your roles that you now need to make, if there are any. The Parkinson’s New Zealand library has books about dealing with children that are available for loan.
GET GOING doing another race, although she admits she hasn’t entirely discounted the idea. The hardest part of the whole thing was fitting in all the necessary training, she says. Her commitment became “absolute” when, after a month or two of thinking about it, she announced she was seeking sponsors. Having some of her sponsors pay-up-front by dropping the money off into her letterbox well before race day intensified the pressure. “If I hadn’t started the race I would have had to leave the country.” Her advice for anybody considering something similar? “Go for it.”
Get Going - BOYS ON BIKES It’s a long way between Christchurch and Wanaka. Particularly if you ride the 430 kilometre distance on a bike. Which is exactly what Andrew Watkins and his friend Francis Hopgood did in December, raising $145 for Parkinson’s along the way.
The winner on the day? Parkinson’s New Zealand
Get Going - SUE ALLEMAN Late last year, Taranaki Field Officer Sue Alleman completed the TinMan triathlon in Tauranga and raised over $1,100 for Parkinson’s. Sue describes the race as a good way of “giving back” as she had been sponsored in the past by Parkinson’s New Zealand to attend Outward Bound in the Marlborough Sounds as a support person. On a personal level, the event gave her tremendous satisfaction to train for and compete in. “It was a win-win.” The event involved a 1500 metre swim, a 40km bike ride, and a 10km run. Although she had previously completed a marathon, it had been 30 years and several children ago, so some serious training was called for, Sue says. Sue’s husband Bob, a regular competitor in endurance events, helped out with training tips and advice about establishing a regular training schedule. Sue swam for 40-50 minutes three days a week, biked 40-45km twice a week, and ran four times a week. The first time Sue rode for the full 40km she felt pretty pleased with herself; but the feeling lasted only briefly: arriving home she fell off her bike, broke a tooth and need 5 or 6 stitches in her lip. Six weeks out from the big day, this wasn’t exactly a confidence booster, Sue says, but she managed to shrug it off and get on with it. Conditions for the race on December 4 were perfect still and overcast and with lots of friends and family in support. Sue had a good race (although she describes the swim as feeling like “being in a washing machine”) and her supporters handed her a Parkinson’s balloon to carry over the finish line. Sue was pleased with her time of 3 hours, 27 minutes, and 23 seconds but won’t be drawn on the subject of
Andrew and Francis came up with the idea when they were out for a ride in the Port Hills behind Christchurch and simply asked themselves “why not?” They figured that apart from being good fun and a challenge, the ride would be a great way to raise money for a good cause. Parkinson’s seemed like just the ticket. (As it turns out, Andrew’s grandmother had had the condition, but he was unaware of this when he and Francis were casting around for a suitable recipient; instead it was the Mohammed Ali connection that swung things in Parkinson’s favour.) Once they had made up their minds to do the ride and had put their parents’ minds to rest about safety issues – the inland route sees a lot of bus and truck traffic – the boys set about acquiring some serious cycling muscle. Their daily rides in the Port Hills went well until Andrew lost control on a corner and gave himself a body-length dose of gravel rash. It could have been the end of the trip but Andrew says it just made him more determined. The ride itself went pretty smoothly and consisted of three big days in the saddle. The weather was kind and the buses and trucks generally pulled out to pass. Andrew’s mother drove the support car and kept the boys well fed and watered. “Mum supported us 100%. And she got some sponsorship for us as well.” The ride was just a start, says Andrew. Next summer, the boys want to ride to Nelson and plan eventually to ride around the whole country.
For more information about our Getting Going for Parkinson’s please call 0800 473 4636 or email us at email@example.com or.
CARERS CORNER Keeping a diary For people with Parkinson’s, keeping a diary about how they are coping with their Parkinson’s, their medications, and any problems they experience can be very useful. It can also be of benefit for carers to record their experiences of caring. This can be helpful preparation for when you visit a doctor or another health or social-care professional. It can also help you to demonstrate how variable Parkinson’s can be for the person you care for and, consequently, how your role as a carer can vary from day to day and, indeed, during each day. Some carers also find keeping a diary provides them with an emotional outlet for their feelings.
• Can the person you care for be left on their own or do you have to be there to keep an eye on them? • Does the person you care for have any communication problems? Does this affect your social life? Do you have to be an advocate for them? • Do you have to be responsible for the person’s medication? If yes, what does this involve? (For example, reminding them to take it? Giving it to them and making sure they swallow it?)
What kind of diary should I use?
LIVING SITUATION • Do you live with the person you care for? What is access to and in the home like? • If you do not live with the person you care for, are there any difficulties as a result? (For example do you live a long way from them? Do you have other responsibilities that limit the time you can give them?) • Do you have a car? If not, what alternative forms of transport are available to you? • Do you have enough money to live on, or are finances tight?
Whatever suits. There are templates and diaries specifically designed for carers available, or you may prefer simply to write an account of each day in a notebook or on your computer.
What should I put in the diary? Be as honest as possible and include anything you find difficult that you would like help with. This will be valuable to the doctor or other professional that you give the diary to. Below is a guide to help you complete your diary. Ignore any questions that aren’t relevant to your situation. Include basic information about you and the person you care for – e.g. date of birth and contact details for doctor etc.
ABOUT YOU • How many hours a week do you care? Include everything you do; the questions below will how you identify them all. • Do you have any health problems yourself? Do these affect your ability to do caring tasks? In what way? Does caring affect your health? (Back problems? Stress? Anxiety or depression? Lack of sleep?) • What other roles do you have apart from being a carer? (Parent? Employee? Child?) • How does caring affect these relationships and your relationship with the person you care for? INFORMATION ABOUT THE PERSON YOU CARE FOR • Who are you caring for? What is your relationship to them? • How long have they had Parkinson’s? What particular problems do they have with their Parkinson’s? • Do they have other health problems that you need to accommodate? • Think about how they were before they had Parkinson’s and how they are now. What has changed? • What other tasks do you perform? What personal care do you have to provide the person with? Describe what you do to help.
HOUSEWORK Think about the housework you have to do and make sure you include this. Do you have any help with this?
YOUR NEEDS AS A CARER • How is caring for you? Do you find it difficult and feel it will be difficult to continue? Would extra help help you cope? • What extra help do you think you need? List in order of priority. • What parts of the caring role do you want to do (if any)? What parts can you manage without help? What do you find particularly difficult? What do you definitely not want to do? EMPLOYMENT/EDUCATION • If you work, what kind of work do you do? Part-time or full-time? • What arrangements are made to care for the person you care for while you are at work? Is this something you need extra help with? • How easy is it to take time off work in an emergency? Is there anyone who can help the person you care for in an emergency if you are unavailable? • If you are a young carer, is your education affected by caring? If so, in what ways? LEISURE • Do you get any time for yourself? How often? • Is there something you would like to do that you cannot do because of your caring responsibilities? • Do you need breaks to help you deal with wider responsibilities, such as attending a school sports day? Source: Parkinson’s UK - Keeping a Diary: For Carers information sheet.
RESEARCH UPDATE: COMMUNICATION STUDIES Parkinson’s New Zealand support was instrumental in the completion of two ground-breaking studies at the University of Canterbury into the communication difficulties faced by people with Parkinson’s. Communication difficulties for people with Parkinson’s are reported as being one of the most socially isolating aspects of the condition. For up to 90% of people with the condition, speech difficulties prevent full participation in family, social, and work activities or make participation onerous. The first study investigated how communication difficulties associated with Parkinson’s affects people’s ability to participate in their everyday lives –how they communicate with family and friends and speak with their doctor for example. The research aimed to clearly identify the problems experienced and develop a tool to measure the extent of these difficulties. Associate Professor Megan McAuliffe from the Department of Communication Disorders at the University of Canterbury is working in collaboration with Professor Tim Anderson (Van der Veer Institute of Parkinson’s and Brain Research) and colleagues in the USA on the project. In December 2010, Parkinson’s New Zealand issued a call for people with Parkinson’s and speech difficulties to participate in the project and complete questionnaires. The response was tremendous Associate Professor McAuliffe says: “without the assistance of Parkinson’s New Zealand, the project would not have reached over 200 people with communication difficulties and Parkinson’s from across New Zealand.
communication partner, and more particularly the older communication partner? That’s what we want to find out.” Participants with Parkinson’s were recorded (audio and video) speaking and then asked to carry out tasks simulating common speech strategies, such as speaking twice as slowly or twice as loudly. These speech samples were replayed to older and younger listeners who were asked to transcribe what they had heard. The results provide insights into whether conventional strategies facilitate better communication or not. Few studies have investigated treatment outcomes from the perspective of the older listener, Associate Professor McAuliffe says. The research will help determine if the comprehension of older listeners’ can be predicted from the variables of age, cognitive processing, and working memory and whether existing speech therapies result in significant improvements to older listeners’ ability to comprehend dysarthric – slow, slurred, difficult to understand – speech. Associate Professor McAuliffe said the findings of the study will provide critical evidence to underpin the improvement of existing intervention strategies and the development of new speech rehabilitation techniques, benefiting older communication partners of people with dysarthria. “If we make as our measure of success the listener better understanding the speaker then we will possibly see some real changes in the strategies we use in clinical practice.” Results from the study will be out by the end of the year.
“Parkinson’s New Zealand was instrumental in ensuring that we were able to promote the research to those with Parkinson’s and also followed through with their field officers to ensure that appropriate people with Parkinson’s might be made aware of the research and given the opportunity to participate.” The research team is currently analysing the responses and will share the findings with the community later this year. In the second study, the first of its type internationally, Associate Professor McAuliffe and Professor Anderson are looking at speech rehabilitation strategies for people with Parkinson’s. This three-year study examines how older adults comprehend the disordered speech associated with Parkinson’s. Until now, listener-based rehabilitation research has used young people, such a university students, to examine how adults comprehend disordered speech. However, the partners of individuals with speech problems are usually much older than these test subjects and may be affected by age-related hearing loss and slowed cognitive processing. “We want to determine which rehabilitation strategies provide the greatest benefit to listeners. It is all very well for a speech therapist like me to tell the person to talk six decibels louder but what effect does that have for the page 10
NEWS FROM AROUND THE COUNTRY
Northland The Division organised a ‘doughraisers’ event with Domino’s Pizza. This is a scheme run by the company where a local store will raise funds through the sale of pizza products on a particular day for a chosen charity or community group. Details may vary between stores but usually once a store has agreed to run a doughraiser, one day of the week, usually a Monday or a Wednesday night, is chosen as the doughraiser day and a predetermined amount, usually $1, from every pizza sold goes directly to the chosen group or organisation. Northland’s doughraiser evening raised $156. To help boost sales, members Bruce and Jeanne Thompson held a pizza dinner for their family and friends.
Wairarapa Parkinson’s Wairarapa held a well attended Christmas lunch at the Copthorne Solway Park, 28th November. Field officer Sue Syben and Chairman Mike Lynch made a lovely fairy and Santa as they distributed the gift exchange.
Taranaki In late November Taranaki held a fishing weekend for its “young Parkinsonians”. Fifteen people including partners and a field officer headed to Omori on Lake Taupo. The Saturday morning produced ideal fishing conditions and three trout found their way into the smoking chamber and that evening’s dinner. The rest of the weekend was spent relaxing.
For the January meeting members went to Temuka to see the alpacas run by members Neil and Anne (also division Treasurer).
West Coast Parkinson’s West Coast had a full house at the office for their Christmas morning tea on 3rd December. The Mayor and Patron of the Society Tony Kokshoorn joined them for a cuppa prior to opening the Greymouth Christmas Parade. They also held a bake sale and raffle out on the street as part of the Christmas Carnival. A great day enjoyed by all!
Otago Parkinson’s Otago folk visited member Kieran Hurring’s garden at the start of February. Kieran is a keen gardener and each season has a different show of colour in his large property. The undulating walk was a little difficult for some members so they were able to view the prolific vegetable and flower garden from the large balcony around the house. The majority of plants Kieran has grown from seed or cuttings. February was a great month to view the dahlias and hydrangeas in particular.
THANK YOU THE DAVID LEVENE FOUNDATION
South Canterbury South Canterbury branch had a very successful Christmas afternoon in December. Rather than going out for the usual lunch they had an afternoon function at which the Waimataitai School brass band entertained. Everyone joined in to sing Christmas carols after which Santa handed out gifts and there was an afternoon tea.
WE NEED YOUR HELP WE NEED YOUR HELP TODAY TO SUPPORT MORE EDUCATION AND RESEARCH INTO PARKINSON’S. Parkinson’s New Zealand is committed to initiating, funding, and supporting education and research into Parkinson’s. We support medical, social and applied research that might lead to new treatments in the future. We also support research and education which can help to improve the day-to- day lives of people with Parkinson’s right now. This is why we helped Dr Megan McAuliffe get her study on communication difficulties faced by people with Parkinson’s up and running (as described on page 10), and why we will be funding a number of other research and education projects in 2012. Unfortunately there are more worthwhile programmes than we have the resources to support. With your help we could do so much more.
PLEASE MAKE A DONATION TODAY TO HELP US INCREASE OUR SUPPORT FOR PARKINSON’S RESEARCH AND EDUCATION.
YES! I WANT TO MAKE A DONATION TODAY TO HELP PEOPLE WITH PARKINSON’S: Name: ______________________________________________________________________________________________ Address: ____________________________________________________________________________________________ Phone number: ___________________________________ Email: ____________________________________________ Here is my gift of: $100
$ ____________________ my choice
My cheque is enclosed made payable to Parkinson’s NZ Please charge my
CALL OUR CREDIT CARD DONATION HOTLINE: 0800 473 4636 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%.
Parkinson’s New Zealand PO Box 11-067, Manners St, Wellington 6142 • Phone: 04 472 2796 • Fax: 04 472 2162 • Email: firstname.lastname@example.org • Web: www.parkinsons.org.nz • Freephone: 0800 473 4636 / 0800 4PD INFO The Parkinsonian
Published on Mar 17, 2012