VOL. 19 – NO.3
The Parkinsonian Readership Survey We are really thankful to all of the people who took the time to respond to The Parkinsonian Readership Survey. Your responses will help us determine the future content of The Parkinsonian. In June we carried out The Parkinsonian Readership Survey to evaluate people’s satisfaction with The Parkinsonian. We wanted to learn more about the part The Parkinsonian plays in your understanding of health information and find out if it helps you make decisions. We also wanted to know whether we are including the right information and if it is useful and understandable. This data gives us a more complete picture of what readers want to read in The Parkinsonian. Here are some of the results:
of people who responded have Parkinson’s.
of people who responded live with or care for someone who has Parkinson’s.
A total of 662 of our readers responded to the survey. THERE WERE SOME REALLY POSITIVE FINDINGS:
90% of the
people who responded to these questions said they read the News and Research and Fact Sheet sections.
85% of the people who answered these questions are happy with the text type and size, colours and images used, and how sections are arranged.
91% of the people who responded to this question said they trust the information in The Parkinsonian.
“It is certainly a good source of information regarding many aspects of Parkinson’s. I feel confident that the information contained therein is up-to-date and reliable.” THE FINDINGS ALSO FLAGGED SOME AREAS THAT NEED MORE ATTENTION: Our survey told us that people place a high value on the latest research news. 59% of the people who responded to this question said they want even more information about the latest research.
the people who responded to this question want more daily living tips and tricks.
41% of the people who responded to this question want more information about products and services.
“I appreciate the feeling of inclusiveness it provides even to those of us on the edge.”
Emotional Stress and Movement Deficits With Dr Rebekah Blakemore The Parkinsonian was pleased to spend time speaking with Dr Rebekah Blakemore recently about her work. New Zealand Brain Research Institute Research Fellow, Dr Rebekah Blakemore, has dedicated much of the past couple of years to exploring the relationship between emotional stress and movement deficits in several movement disorders including Parkinson’s. Rebekah, who works at Otago University’s department of Medicine in Christchurch, was recipient of the Neurological Foundation’s 2014 Neurological Foundation Repatriation Fellowship and a 2015 Project Grant. Rebekah’s work on emotional stress and movement deficits in Parkinson’s was in June presented at the 20th International Congress of Parkinson’s Disease and Movement Disorders. Her study was based on the work she conducted with two former colleagues at the University of Geneva, Switzerland. The Parkinsonian spoke with her about her research in this area. As part of their project Rebekah and her colleagues had 22 participants press on a hand grip device that measured their force production while viewing pleasant, unpleasant, neutral or blank emotional images. 2
“It was discovered that the more unpleasant and arousing [in terms of the intensity of emotion] the image, the greater the effect on force and the greater the brain activity in areas involved in emotional action. However, we can’t say whether the change in force is driving changes in brain activity/subjective emotional experience or vice versa,” Rebekah says.
WHAT DOES THIS CENTRAL FINDING MEAN IN TERMS OF THE POTENTIAL FOR PARKINSON’S RELATED MOTOR LIMITATIONS TO BE REDUCED VIA APPLYING EMOTIONAL STIMULI? Rebekah Blakemore says: “The key message from this study was that negative emotional states can significantly influence how we move, and in this case, activity in brain areas involved in processing negative emotions while controlling the amount of force exerted when gripping an object. “Past research has shown that people with Parkinson’s can have impaired control over their hand gripping. We also know that in addition to motor symptoms such as tremor or slowed movement, feelings of depression and anxiety are common. “Many patients will also recognise how being in stressful situations or feeling anxious can worsen their tremor. Yet despite this knowledge about disrupted movement and emotional processing, there is very little research investigating a possible interaction between the emotion and motor systems in Parkinson’s. “So to follow on from my work in Geneva, I conducted a similar experiment at the New Zealand Brain Research Institute, together with my colleagues Prof Tim Anderson and Dr Michael
MacAskill, to unite these seemingly disparate lines of research to explore whether negative emotions influence or further impair movement control in Parkinson’s. “Our findings haven’t been published yet, but as we predicted, variability in grip-force control and the amount of muscle activity in the forearms were greatly exacerbated when people with Parkinson’s were exposed to a series of unpleasant images but not pleasant or neutral images. This effect was not seen in healthy controls. “The results of these studies raise the intriguing possibility that reducing stressors or manipulating emotional information could be a viable strategy to improve movement in Parkinson’s.”
WHERE FROM HERE? WHAT ARE YOU GOING TO DO WITH YOUR FINDINGS? Rebekah says, “My work at the University of Geneva was just the beginning of what I hope will be a fruitful area of research. This is a rather young research field; we know very little about how the brain integrates signals from the emotion and motor systems, and how this alters our behaviour in the normal or damaged brain. My next project begins at the end of this month, and focuses on resting tremor. “We have encountered a number of people with Parkinson’s in the clinic who have told us they can consciously suppress their tremor at will for brief periods. Used as a coping strategy, this fascinating ability of some patients to suppress their involuntary tremor has not yet been reported or investigated in clinical literature. We will be measuring changes in muscle and brain activity, using functional neuroimaging, to understand the processes involved in voluntary tremor suppression. We will also examine how positive and negative emotions might diminish or worsen tremor and whether emotional state alters one’s ability to suppress tremor. “Although we are just at the research stage and not developing any treatment options, the results of our studies may in the future inform development of novel emotion-based movement interventions that could be integrated with physical therapy or motor rehabilitation. The possibility of a patient-driven therapeutic approach to diminish tremor is particularly relevant given that tremor is relatively unresponsive to typical pharmacological treatments.”
COULD YOUR FINDINGS ULTIMATELY CHANGE OUR UNDERSTANDING OF THE RELATIONSHIP BETWEEN MOTOR AND NON-MOTOR SYMPTOMS OF PARKINSON’S? AND IF SO, HOW? Rebekah says, “Our research is a piece in the puzzle, but I don’t think we’re at that stage yet. So far we have manipulated emotional state by exposing participants to emotional images.
Although this is a robust method to elicit a stress-like response, it induces only acute changes in brain activity and behaviour. We’ve also only included in our studies those patients without any anxiety or depressive disorder. So although we’ve found a relationship between negative emotions and impaired movement in Parkinson’s, we have not yet formally tested any relationship between motor and non-motor Parkinson’s symptoms. Additional studies are needed to examine, for example, the impact of chronic stress, or depression on motor impairments in Parkinson’s.”
PRIOR TO YOU STARTING THIS WORK ON EMOTIONAL STATES/MOVEMENT IN PEOPLE WITH PARKINSON’S, WHAT OTHER AREAS OF NEUROSCIENCE HAVE YOU WORKED IN AND WHAT HAS BEEN OF PARTICULAR IMPORTANCE TO YOU? Rebekah says, “My current line of research on emotion and movement stemmed from my PhD work on Functional Neurological symptom Disorder (FND; also called motor conversion disorder). I researched conversion paralysis from a movement neuroscience perspective (also in collaboration with neurologist Associate Professor Graeme Hammond-Tooke). But at the end of my doctorate, it was clear to me that examining movement deficits in isolation, without acknowledging potential links with emotion would limit our understanding, not only of this disorder, but other disorders in which aberrant emotion-motor interactions may be present (such as in Tourette’s Syndrome, Obsessive-Compulsive Disorder, or indeed Parkinson’s). “After my PhD, it was important to broaden my knowledge and gain international research experience, which was one reason I decided to complete my postdoctoral training in Switzerland, based in the Neurology and Imaging of Cognition Lab (University of Geneva), and the Swiss Centre for Affective Sciences. This provided me with an amazing opportunity to gain expertise in functional neuroimaging and affective sciences. It was always the goal to bring these skills back to New Zealand to establish a new research pathway in a clinical domain.”
A neuroscientist on a mission Rebekah Blakemore is 34 and in February had her first baby, Charlotte. She is currently on parental leave and lives in Corstorphine, Dunedin with her husband, Hamish, and their daughter. Rebekah says, “As a former gymnast, I have always had a fascination with how the body works, particularly with how we can perform highly skilled movements in an efficient and seemingly automatic fashion. After focussing on the biomechanics of human movement during my undergraduate degree at the University of Auckland, it became impossible to ignore the role of the brain. “To pursue my curiosity, I moved to Dunedin to undertake my postgraduate research in movement neuroscience [University of Otago]. I spent nine years working with Associate Professor Greg Anson and Professor Brian Hyland to understand how the brain prepares and executes movement in healthy people and also in people with impaired movement as result of neurological disorder. “The human brain is a remarkable, mysterious organ. I was inspired by the brain’s endless capacity to reorganise and adapt especially following damage or trauma. The speed at which the field of neuroscience is exploding is astonishing. “It’s particularly exciting to see the power of neuroimaging techniques unfold to facilitate our understanding of movement disorders.” Rebekah says outside of work you’ll find her on a ski slope, rock climbing, or baking chocolate desserts.
A WORD FROM THE CHIEF EXECUTIVE
Tena Koutou Katoa A number of events and activities have kept us busy at National Office and across New Zealand. Our Community Educator Conference held in Wellington was a great chance for our Community Educators to increase their knowledge and connect with other Community Educators from across New Zealand. As we go to print with this issue of The Parkinsonian we will welcome our Coordinators to our Coordinator Conference in Wellington. We will focus on building skills and exploring more funding and fundraising opportunities. Then I will join a team of New Zealanders to attend the Fourth World Parkinson Congress in September.
Our Connecting People, Changing Lives theme for Parkinson’s Awareness Week reminds us of the importance of connecting for people living with Parkinson’s and their families and carers. Raising awareness is an important part of what we do. I look forward to our street appeal in November where I always love to connect with people and hear stories about how Parkinson’s New Zealand has helped change someone’s life. Nga mihi nu
NEWS & RESEARCH
Identifying a way to stop losing dopamine producing cells in a fly model could translate into new and better treatments for Parkinson’s.
Higher levels of c-Abl are associated with Parkinson’s. Scientists believe that too much c-Abl may interfere with the function of the parkin protein, encourage alpha-synuclein clumps and/or impact dopamine signalling.
NEW STUDY REVEALS CLUES ON THE ORIGINS OF PARKINSON’S
The study was published in the Journal of Parkinson’s Disease in June and provided evidence that treatment with nilotinib increased dopamine levels in people’s brains and reduced the levels of factors indicating that dopamine producing cells are dying. Earlier laboratory studies had shown the protective effects of nilotinib.
New research, published in the journal of Cell Death and Disease in May, has revealed important information about the origins of Parkinson’s. Scientists in the UK have discovered that the area of the cell responsible for putting together certain proteins—called the endoplasmic reticulum (or ER)—may play a more significant role in Parkinson’s than previously thought. Brain cells work like a manufacturing line. They use energy to assemble new proteins and recycle proteins that get damaged. Researchers have found that a number of steps in this manufacturing line are affected in Parkinson’s—with the cell batteries, protein production and waste removal among the steps that are affected. The research team at the University of Leicester studied fly models of Parkinson’s to better understand the role of two genes that are involved in keeping mitochondria—the batteries of the cell—healthy. They found that changes in these genes caused mitochondria to attach themselves to the protein folding centre, causing stress to the ER. This led to the loss of brain cells in Parkinson’s. However if scientists prevented malfunctioning mitochondria from attaching to the ER they could stop cells being lost and prevent symptoms developing. The research team suggests that problems with the ER, rather than the mitochondria, may be a central cause of cell loss in at least some types of Parkinson’s. Identifying a way to stop losing dopamine producing cells in a fly model could translate into new and better treatments for Parkinson’s. This would have the potential to slow or stop the condition in its tracks. Source: parkinsons.org.uk | medicalnewstoday.com
CANCER DRUG RAISES DOPAMINE LEVELS A small Phase 1 clinical trial from Georgetown University in the US suggests that the cancer drug nilotinib can treat both motor and cognitive problems in people with Parkinson’s or Lewy body dementia. Nilotinib is a drug used in the treatment of leukaemia, a cancer of the white blood cells. The medication inhibits a class of certain proteins inside nerve cells, including one called c-Abl, which is an emerging target for Parkinson’s research.
The 11 participants in the study had moderately advanced Parkinson’s and mild to severe cognitive impairment. The drug was used at lower doses than for patients with leukaemia and seems to improve symptoms over the 24 weeks of treatment. The results of the study need to be viewed with caution, as it was only a small study and the drug was not compared to a placebo. The researchers hope to clarify the effects in a much larger Phase 2 placebo-controlled study. Source: michaeljfox.org | sciencedaily.com
NEW GENE LINKED TO PARKINSON’S Researchers recently added to the list of Parkinson’s-associated genes when they identified mutations on TMEM230 linked to Parkinson’s. Discovery of this gene provides a new potential therapeutic target for the treatment of Parkinson’s. Scientists from Northwestern University in the US searched for differences in genetic information between family members who had Parkinson’s and those who did not in a study published in June in Genetics. They identified mutations on TMEM230 as the cause of Parkinson’s in these people and confirmed the results in families in Asia and North America, indicating that this gene may be linked to Parkinson’s in people of different ethnicities living in different environments. The researchers also discovered that TMEM230 makes a protein that plays an important role in regulating synaptic vesicles, small packets in nerve cells that store and release neurotransmitters (chemical messengers that help cells in the brain communicate). TMEM230 mutations prevented these packets from working normally. Approximately 10 percent of Parkinson’s cases have a genetic cause. Mutations in two other genes, SNCA and LRRK2, have been causally linked to Parkinson’s. Others, such as GBA, raise one’s risk for Parkinson’s but are not necessarily the definitive reason for Parkinson’s onset. Source: michaeljfox.org | natureworldnews.com
It is still not known what causes Parkinson’s but it is likely to be a combination of environmental and genetic factors rather than one single event or factor.
UNDERSTANDING THE LINK BETWEEN HEAD INJURY AND PARKINSON’S RISK New research published in JAMA Neurology in July suggests that severe head injury, which causes loss of consciousness, could be linked to increased risk of developing Parkinson’s. Researchers from the University of Washington in the US studied 7,130 older people from three different populations to look at the risk of conditions such as Alzheimer’s and dementia in people who reported loss of consciousness after a brain injury. They found that whilst a link between head injury and Alzheimer’s was not present, people who reported head injuries had 3.5 times higher chance of developing Parkinson’s than those who did not.
“We have reasons to believe that this is a real trend,” lead author and neurologist Dr Rodolfo Savica, said in a press release. The researchers note the trends should be interpreted with caution. The trends may be due to increased awareness of symptoms, improved access to care for people with Parkinson’s, and better recognition by doctors. The researchers suggest the trends may be related to changes in smoking behaviour. The prevalence of smoking has declined over time. However, other important lifestyle and environmental changes also have taken place over the decades. Changes in exposure to a number of risk factors may have caused the incidence of Parkinson’s to increase. Source: sciencedaily.com | medicalxpress.com
The head injuries in this study are slightly different from the mild, repetitive brain injuries that can lead to a condition called chronic traumatic encephalopathy (CTE). Head injuries that result in the loss of consciousness but don’t cause the person to suffer any obvious adverse effects are more common than repetitive trauma seen in sport like rugby. It is still not known what causes Parkinson’s but it is likely to be a combination of environmental and genetic factors rather than one single event or factor. Researchers have identified a number of factors that influence the risk of developing Parkinson’s. The risk of developing Parkinson’s due to a severe head injury still remains low overall.
Source: parkinsons.org.uk | time.com
STUDY SHOWS INCIDENCE OF PARKINSON’S INCREASED OVER THE PAST 30 YEARS A study in the US shows the incidence (new cases) of Parkinson’s and parkinsonism conditions may have increased over the past 30 years, but that trend must be confirmed in other populations, according to an article published by JAMA Neurology in June. Researchers from the Mayo Clinic studied time trends for Parkinson’s and parkinsonism conditions in Minnesota from 1975 to 2005. The study suggests that the incidence of Parkinson’s and parkinsonism conditions may have increased between 1976 and 2005, particularly in men 70 years old and older.
helping to keep people on time
helping to keep people on time
Medicine Reminders | Timers | Electronic Pill Boxes | Automated Pill Dispensers | Vibrating Watches & Clocks | Talking Watches & Clocks
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Tips for caring from a distance If you live in another city, town, island or even overseas from someone with advanced Parkinson’s, here are some ideas to bridge the distance. Caring at a distance can be challenging. There is physical distance between you and the person who needs your support, and there is also the upsetting feeling of not being there, and worrying if someone you care about is reliant on the support of others.
It’s vital you have relationships with family members, friends and carers in common in case any emergency happens. It’s preferable you do not contact them for the first time when there is a problem. Make yourself known. You can ask the person you care for about whom you can contact.
The good news is that families, carers and friends can all absolutely still make a valuable contribution despite the barrier of distance. Here are a few tips that you may find useful.
Try to arrange family meetings to sort out roles and responsibilities. It’s very helpful to agree on criteria that may trigger the need to get together to discuss major decisions if circumstances change.
BE PREPARED You’re well advised to build a network or at least join an existing network of the person’s friends and family who keep each other up with what’s happening with the person you care for. You should develop a plan for staying in touch, providing support through other people, obtaining regular reports on the person’s welfare, resolving crises and making visits when you can. It’s useful if you talk to other long-distance carers (if possible) and develop knowledge of Parkinson’s that you can use when talking to family or friends who may live closer. 6
STAY IN TOUCH Let your loved one know you care and you’ve been thinking of them. Consider sending postcards, photos, short letters, small gifts or flowers. Remember birthdays, anniversaries and the like. It’s recommended you establish a phone routine so that you call at around the same time of the day. Make phone calls short. You may consider using Skype or a similar communication tool.
You may want to work on resolving any conflicts in the relationship you have with your other family members so that you can work together as your loved one would want you to, for their welfare. If your Parkinson’s person lives in residential care or similar, it pays to develop a good relationship with the staff so that they will know what to keep you informed about and how regularly. If you are worried about any person that may have been hired or provided to help, say, your mother or father, make sure their credentials have been checked and don’t feel shy about following up on anything that your parent says that concerns you. It’s usually best to talk.
Try to anticipate what care strategies may be required to prevent a crisis and identify a person you can trust to accurately assess a situation and provide you with advice. Compile a list of help that’s available in the area and consider redirecting mail to When you talk, like with any friend, it’s good to strike a balance someone who will be responsible for the person’s finances. between updating people on what you’ve been doing and asking them Setting up legal, financial and medical arrangements may require what they have been up to and have planned for the near future. a Power of Attorney. Always tell your loved one about any actions that you are taking and be aware they might sometimes feel as if you are meddling. Get consent to talk to the person’s doctor rather than trying to Have a plan for dealing with crises. Have a list by your phone of second guess what is going on from a distance. whom to contact about what issues. Visit when you can and try to arrange your visits to give local family members some respite from caring, and keep in touch through regular phone calls or email. Be sensitive to family members who are caring on a daily basis especially if you disagree about your loved one’s needs. If you are travelling long distances and can only visit on occasions, allow time for you to meet with service providers after your visit. Ask for feedback and provide them with your observations.
BUILD A CARING SUPPORT NETWORK Arrange support via family, friends or support groups. Try to establish a good relationship with a family member or friend who lives nearby.
LOOK AFTER YOURSELF
If you are caring at a distance this can be psychologically challenging . It may be that you want to talk to someone about this, just to offload maybe. You may have your own feelings of privacy and loyalty to deal with, and possibly even denial. For example, you may not want to acknowledge that your loved one needs so much assistance, or you may feel guilty talking behind their back. Or you’re just worried or tired. Be reasonable with yourself. We all need to recognise these emotions if the wellbeing and health of a loved one is at stake. What you hear or find out needs to be passed on if it can help ensure better support for your loved one. Whatever happens, know that you make a difference.
Parkinson’s and fatigue Fatigue affects many people with Parkinson’s. However, there are a number of ways to manage or reduce fatigue. Many people with Parkinson’s experience fatigue and it can have a major impact on your well-being. However there is a lot you can do to manage fatigue so that it doesn’t cause you so many problems. It’s helpful to find out why you feel low on energy or worn out and it pays to remember that there may be more than one cause. Your fatigue may be a symptom of another, co-existing condition. With Parkinson’s your energy levels tend to fluctuate somewhat anyway, especially as the condition progresses. Our factsheet on Parkinson’s and sleep problems may be of interest to you too, as may our factsheet on Parkinson’s and depression.
WHAT IS FATIGUE? Fatigue can be described as an overwhelming sense of tiredness, a lack of energy and a feeling of exhaustion. Fatigue can be a physical, emotional or mental feeling or experience, or a combination of these. It’s important not to confuse fatigue with sleepiness. Sleepiness tends to be a short term phenomenon, but fatigue is over the medium or longer term. Akinesia, or trouble initiating movement, often feels like fatigue. A person with akinesia must move slowly and will find it hard to finish a task in what is considered a usual amount of time. Everyday tasks such as getting dressed may take a lot of effort.
WHAT CAUSES FATIGUE? Although there is no formal consensus among health professionals, fatigue is attributed to a number of possible causes. Having Parkinson’s means that what was automatic movement may now require conscious effort, which can be very tiring. Parkinson’s drugs which help with slow movement may be at least part of the solution to this problem. Depression and low mood can cause or worsen fatigue, and anti-depressants and/or therapy and life style changes may help. These include getting more sleep, exercising, improving your diet and other recommended activities to manage depression. Problems related to sleep — whether insufficient sleep, insomnia, disturbed or broken sleep — may contribute to fatigue.
because suddenly turning on bright lights can be disruptive and impairs your natural production of melatonin, a chemical that regulates your sleep patterns. Staying away from screens is particularly vital when you are trying to sleep. Follow a balanced diet that has plenty of protein and, if you eat pasta and other carb-loaded food, insist on low GI carbohydrates that do not cause your blood glucose levels to go too high. Don’t eat things high in sugar that can contribute to ups and downs in your mood. Eating whole foods and avoiding processed food usually helps. Avoid coffee, alcohol and tobacco, especially close to bed time. Get fresh air, whether it’s taking the dog for a walk or visiting the local library, catching up with friends or whatever else you want to do. Exercise regularly. If your exercise involves going to a gym or outside it pays to have a contingency plan for wet days. Doing some exercises in the warmth of your home may be preferable. If you attend exercise classes they often have a social dimension and you and the other people there encourage one and other. This can be good for your mood and consequently your energy levels. Try to co-ordinate periods of activity with times when your medication is working at its most effective. If you are experiencing fatigue, discuss it with your health professional. Get the support and information you need so that you can make the best decisions for yourself. Of course your partner, carer and/or your family may be able to help you. Sometimes just another perspective, or another head on the job, helps.
Some experts believe fatigue may have its own unique cause. They say there is a distinct process or pathology in the central nervous system that causes fatigue.
WHAT CAN YOU DO ABOUT FATIGUE? Delegate tasks. Let your carer, family and friends help you. Don’t take on too much. It pays to write ‘to do’ lists and schedule things if you want to be organised, so that you can see whether you are setting realistic targets. Have a regular bed time and stick to it. Many people find having a bedtime routine helps, like bathing just before bed and maybe taking a good book to bed. Keeping the room you sleep in uncluttered, warm or cool depending on the weather, and a pleasant relaxing place to be in, is vitally important. Using low lighting is preferable,
FACT SHEET – CONTINUED FROM PREVIOUS PAGE
If your fatigue is related to movement, your doctor may recommend medication changes that will help. Although it may not seem intuitive to many people, meditation and relaxation exercises may ease your feelings of fatigue. Cognitive Behavioural Therapy (CBT) is an effective psychological therapy used by professionals and national health systems as a treatment for depression and many other disorders. CBT teaches people how to recognise and change patterns of thought and behaviour to solve their problems and has proven very effective for many health issues. CBT can be very helpful for people that feel they cannot control behavioural patterns (such as always going to bed too late). You may want to talk with your Parkinson’s Community Educator about how to access CBT. If you or your carer or family member do attend CBT sessions, be sure to tell the psychotherapist that you have Parkinson’s and what you are thinking when you feel tired. Apathy is a problem in its own right. This is when you lose interest in things you had previously felt passionate about. It can be mistaken for depression, but is actually a separate condition. Tell your GP or Parkinson’s Community Educator if you are feeling this level of disinterest in life.
Just because you have Parkinson’s you don’t have to shut down your social life. We humans are generally social creatures and there is an energy that comes from conversation and social activities that cannot be replicated elsewhere. Limit your time in front of screens, whether they are your phone, television, laptop, PC or Tablet. If your sleep is of poor quality, 30 to 40 minute naps may help. Naps of this length, professionals recognise, are ideal. However, it’s important you do not nap too close to bedtime or you may find yourself up half the night. A sleep in the middle of the day, particularly after a meal, is a good idea. Let your fingers do the walking when it comes to shopping. Ring before you go or visit the business’s website first to avoid unnecessary trips. You may consider paying a little extra for your grocery shopping to be delivered to your home, at least some weeks, if you can afford this. If you are still working make sure you know your rights at work in terms of breaks so that you are not getting unnecessarily tired. Use the breaks you are entitled to—you will be more productive as well as the benefits you will accrue personally.
If you would like information about Parkinson’s to pass on to a health professional or if you would like to know more about what options you have regarding pain you or someone you care for is living with, please contact your Parkinson’s Community Educator or phone 0800 473 4636. This fact sheet was last updated in September 2016.
Parkinson’s Awareness Week 2016 CONNECTING PEOPLE, CHANGING LIVES Parkinson’s Awareness Week this year (1 to 7 November) will reinforce the ongoing theme of Parkinson’s New Zealand: Connecting people, changing lives. We connect people in many different ways. These include connecting people to the right support and exercise groups, helping our donors and funders connect with a great charity that creates a real impact and promoting connections between exercise and better health for people living with Parkinson’s. “Perhaps our most vital role as an organisation is connecting people with Parkinson’s and their carers with others who can help them and connecting them to services that can enhance their lives,” says Parkinson’s New Zealand Chief Executive, Deirdre O’Sullivan. One of the key highlights Parkinson’s Awareness Week is our partnership with Val Morgan Cinema Network, who last year gave us over $140,000 of donated screen time on over 360 cinema screens for our campaign commercial. If you would like to keep up with what we are doing this year, please visit www.parkinsons.org.nz, like us on Facebook www.facebook/parkinsonsnz or follow us on Twitter @parkinsonsnz. Volunteers are vital for all our branches and divisions during our Awareness Week and throughout the year. If you or members of your family can help please contact your local branch or division. All branch and division contact details are on our website or email us at firstname.lastname@example.org or call 0800 473 4636 for more information.
If you or someone you know would like to raise funds for Parkinson’s New Zealand, please contact us on 04 472 2796 or 0800 473 4636 or email@example.com. We have an information pack on how to get started, fundraising ideas, instructions for setting up a givealittle page and more.
Parkinson’s and sleeping problems
Many people with Parkinson’s have trouble getting to sleep and staying asleep. However there are a few tips you can follow to help yourself or the person with Parkinson’s you care for sleep more soundly. Sleep problems fall into three main categories: sleep onset insomnia, sleep maintenance problems, and daytime sleepiness. Many people are affected by more than one of these problems.
SLEEP ONSET INSOMNIA
Sometimes sleep onset problems may be related to anxiety or depression, whether diagnosed or undiagnosed. If you can determine this is the case, your treatment can focus on dealing with these issues. Other contributing factors to sleep onset insomnia may include restless legs syndrome, akathisia (i.e., inner restlessness) and dyskinesias. These problems can keep you from sleeping and lead to daytime sleepiness. Talk to your doctor if you are experiencing these problems as they may be able to adjust your medication.
Most important is consulting the right health professionals so that the causes of poor sleep can be explored and a management plan discussed and agreed upon. Remember that sleep problems may not always be related to Parkinson’s, especially in older patients.
SLEEP MAINTENANCE INSOMNIA Sleep fragmentation is the most common nocturnal complaint in people with Parkinson’s. It ranges from unexplained awakenings to awakenings associated with quite specific night-time motor disturbances or the frequent need to use the bathroom. Problems moving and then not being able to get up to go to the toilet are a common complaint.
EXCESSIVE DAYTIME SLEEPINESS Excessive daytime sleepiness is a common complaint of both people with early and mid-stage Parkinson’s. Poor sleep at night may contribute to sleepiness during the day. Parkinson’s medications can also contribute to excessive sleepiness and can be adjusted or substituted.
It’s important that when a person with Parkinson’s or a family member begin to notice a sleep problem, the issue is evaluated. It’s helpful if your partner or other family member attends the initial interview with a GP as they may have an insight into the problem that you don’t, because you’re too busy trying to sleep! If you feel anxious or down, mentally sluggish, negative about yourself or display any of the other classic symptoms of depression, tell your GP. They may be able to refer you to a clinical psychologist for assessment and a treatment plan. Alternatively they may recommend a course of anti-depressants for you to try for suitability. If the first antidepressants they prescribe do not help do not hesitate to ask for something different. While sleeping pills may break the cycle of insomnia, psychotherapy treatments such as Cognitive Behavioural Therapy (CBT) teach people how to recognise and change patterns of thought and behaviour to solve their problems and has proven very effective in conquering insomnia. What works in many cases is to exercise more control over your 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 make help you adjust your homeostatic mechanism that balances sleep.
FACT SHEET – CONTINUED FROM PREVIOUS PAGE
Other standard approaches to managing depression well include ensuring a good, balanced diet; regular exercise that has you breaking into a sweat, enough quality sleep and maintaining your social life.
a night awakening is preferable to switching on the TV. The latter is too stimulating and will keep your brain alert and awake. The consumption of alcohol late in the evening leads to rebound wakefulness, and should be avoided.
WHERE YOU SLEEP
Insomnia is common in the general population, and within the Parkinson’s community it seems widespread.
You can re-think your sleeping environment. This could include eliminating activities apart from sleeping in the bedroom, such as watching television; and reducing night time exposure to pets. Sleep will come sooner, in a bed that has warm, easily movable top covers. Use satin sheets and pyjamas to help with getting in and out of bed and turning over. A soft night light can illuminate the way to the nearest bathroom, while not being invasive. 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. Melatonin levels increase in the dark and fall rapidly in bright light. Switching on a bright bedside lamp or room light will reduce the levels of the sleep regulator significantly, making getting back to sleep more difficult. If you’re 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.
PREPARING FOR BED
If you take sedatives of any type, make sure you talk to your doctor about the best time to take them, so that you don’t get an increase in symptoms just as you are trying to get to sleep. You need to know that sleep aides available without a prescription typically contain diphenhydramine, an antihistamine, which blocks the absorption of dopamine. Therefore it’s not unlikely that when you take a sleeping pill your Parkinson’s symptoms will flare up. It’s advised you minimise beverages before bedtime to help avoid the need for frequent visits to the toilet. You know your own bladder so make sure you drink no more than you know it will cope with processing overnight.
NATURAL REMEDIES Valerian has been prescribed since ancient times for its calming and sleep-inducing properties. Other natural remedies include camomile tea, lavender oil, hops, ginseng, and lemon balm. The synthetic version of the natural hormone melatonin (see above under Where you Sleep), which influences sleep cycles, is also available as a dietary supplement. Acupuncture helps some people too.
RESTLESS LEGS SYNDROME AND PERIODIC LIMB MOVEMENT DISORDER Restless Legs Syndrome (RLS) frequently affects Parkinson’s patients. The most common RLS 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, pulling, tugging or gnawing at the legs. Periodic Limb Movement Disorder is not uncommon and involves episodes of repetitive leg movements when asleep. It tends to disrupt the sleep of the sleeping partner more than the person with Parkinson’s.
REM SLEEP BEHAVIOUR DISORDER This disorder involves the acting out of violent dreams. Usually, as a person dreams during REM sleep (when the most intensive dreaming occurs), nerve impulses going to their muscles are blocked so they can’t act out their dreams. In REM behaviour disorders, the nerve pulses are no longer blocked. Many people with Parkinson’s have partial or complete loss of muscle paralysis (atonia) during REM sleep. This may lead to vocal and physical enactment of dreams and a person may inadvertently strike their partner while asleep. If you are affected by this please talk with your GP and Parkinson’s Community Educator, as there are effective treatments for this condition. They will be nonjudgmental and supportive.
If you would like information about Parkinson’s to pass on to a health professional or if you would like to know more about what options you have regarding pain you or someone you care for is living with, please contact your Parkinson’s Community Educator or phone 0800 473 4636. This fact sheet was last updated in September 2016.
OTHER SUGGESTIONS Techniques aimed at relaxing muscles and quieting the mind (meditation for example) are often effective in treating insomnia. Several studies show that regular meditation results in higher blood levels of the melatonin. Studies also show that exercise can improve sleep. Even low to-moderate intensity tai chi can improve the quality of sleep. Experts generally advise completing exercise at least three to four hours before bedtime. All sorts of CDs, MP3 downloads and similar are available when it comes to nice music to drift off to sleep with. Many of them are extremely peaceful – soft harps and the gentle patter of rainfall for example. Keeping a book next to your bed to help you drift off again after
Boxing on In the last issue of The Parkinsonian, we featured dance as a form of exercise that is helpful to people with Parkinson’s. Now we learn more about a boxing programme that is going from strength to strength. Many people with Parkinson’s have become hooked on noncontact boxing. Boxing has been growing in popularity since Rock Steady Boxing, a boxing programme designed for people with Parkinson’s, swept across the US. Now a New Zealand exercise programme designed for people with Parkinson’s that features non-contact boxing is also going from strength to strength. “Our boxers punch boxing bags, shadow box, and partner with pad holders to challenge their co-ordination,” says Counterpunch Parkinson’s head coach, Lisa Gombinsky Roach. “We started last October with a pilot at the YMCA on Auckland’s North Shore and launched officially in April this year. Our coach training and affiliate programme, to be launched later this year, has content and coach training designed by me and heavyweight boxing champion Shane Cameron,” Lisa says. As well as the North Shore classes, Lisa has begun a weekly class at the Wreck Room in central Auckland. Lisa says the benefits are wide reaching and numerous. “Our programmes provide exercise that meets the current guidelines for exercise for people with Parkinson’s around frequency, specificity, challenge, and intensity. Exercise is now understood to be as important for our brains as it is for our bodies but we need to work hard enough to get these neurological benefits.” The class participants The Parkinsonian spoke with, 70 year-old David Steven and 75-year-old Christine Smith, were adamant that the classes were very hard work, but worth it. Physical benefits include improved fitness, strength, agility, dynamic core function, coordination, reaction time, and brain body connection. “From a Parkinson’s specific point of view these benefits translate into better ability to physically manage all activities of daily living that Parkinson’s might make challenging, and participants report additional benefits such as better sleep, more relaxed muscles, better balance, decreased tremor, decreased pain, better posture, better walking quality and endurance, less fatigue, better ability to change direction and better coordination. We also build speech and voice work into our sessions.” David, who says his voice has weakened since being diagnosed with Parkinson’s 10 years ago, was very praising of the recent voice work, which has been a highlight for him. “Boxing naturally lends itself to being excellent training for people with Parkinson’s,” Lisa says. “It is rhythmic, it is visual, it encourages larger than normal movement, it is very easy to
break the movements into easily commanded segments, and highly repetitive movements encourage learning. “For these reasons we see people with Parkinson’s being able to box even when other seemingly easier movements pose significant challenges,” she says. A turning point for Christine was when she tripped on a stone in her back yard and nearly fell over, maybe six months ago, but was able to keep herself upright. The stone rolled under her foot and she was about to go over, she says, but her new abdominal strength meant that she was able to muster the strength and control to steady herself. She wouldn’t have been able to do that previously, she says. Lisa first got on board with Parkinson’s Auckland, working closely with Community Educator Mary Lythe on the North Shore to run Conductive Education and exercise groups. Asked about how she got involved with Counterpunch, Lisa says, “I have been working in Parkinson’s exercise professionally through Conductive Education and personal training for nearly 20 years. I have been following the changing literature around exercise guidelines for people with Parkinson’s and anecdotal reports about boxing programmes for people with Parkinson’s in America for the last few years.” Lisa says there are misconceptions around boxing and Parkinson’s, but it is really important to understand that the exercise or movements of contact boxing do not cause increased risk of Parkinson’s or other neurological conditions.
While everyone has a different game plan for living with Parkinson’s, exercise is an important part of the management strategy. Not only is it good for overall health, but certain forms of activity can target specific Parkinson’s symptoms. Research suggests certain types of exercise may be doing even more—facilitating the brain’s ability to adapt to damage and grow new brain cells. One distinct type of exercise isn’t universally recommended for all people with Parkinson’s. Rather than focusing on any specific method of exercise, it is important to find exercise that meets the principles needed to ease a range of Parkinson’s symptoms. No matter what kind of exercise you choose—boxing, dancing, or tai chi—if you enjoy it, you’ll be more likely to make it a habit.
NEWS FROM AROUND THE COUNTRY Here is just a selection of what our volunteers and members have been up to. Keep an eye out for updates on www.parkinsons.org.nz
NTCELL CLINICAL TRIAL UPDATES Neurologist Dr Barry Snow recently spoke about clinical research using regenerative cell therapy NTCELL at our Community Educator Conference in July in Wellington. Dr Snow also updated our Auckland members about NTCELL research, including the results from the latest study, at an event in Ellerslie, Auckland in August. For more information about the NTCELL trial see the March 2016 issue of The Parkinsonian.
and neuroscientist Dr Malvindar Singh-Bains, who was a nominee for 2016 Young New Zealander of the Year for her research. To register contact Trisha Ryan on 09 437 6878 or email firstname.lastname@example.org by Monday 24 October.
NUTRITIONAL KETOSIS STUDY IN WAIKATO The Waikato Hospital neurology department wishes to invite people from the Waikato region to joining a study of the effects of diet on the symptoms of Parkinson’s. They will be comparing the effects of a low fat diet with those of a high fat “ketogenic” diet. This will be a randomized controlled study with half of the participants randomized to either diet. The study will run for twelve weeks, from April to June 2017. They seek 20-40 people with Parkinson’s under 70 years of age who are enthusiastic and able to follow a meal plan for either diet. It is important that participants are willing to try something new, as the diet may be considerably different from what they are used to.
AUCKLAND: TERRY BEAZLEY AT THE CONFERENCE FOR GENERAL PRACTICE
If you are interested in participating or just have some questions, please email Matthew at Matthew.Phillips@waikatodhb.health.nz or Linda at Linda.Gilbertson@waikatodhb.health.nz for more information.
POSTERS PRESENTED AT THE CONFERENCE FOR GENERAL PRACTICE Parkinson’s Auckland Community Educator Terry Beazley presented two posters at the Conference for General Practice in Auckland —a poster on our services, along with another poster on anxiety. This will help doctors connect more people to our Community Educator Service. Well done Terry!
WINNER: GLYNNIS GUTTERIDGE
Parkinson’s Wairarapa will host a seminar on Wednesday 19 October at the Masterton Club. Speakers will include neurologist Dr David Bourke, specialist hospital physician Dr Tim Matthews, dietician Max Goodall, occupational therapist Franky Spite and clinical psychologist Dr Chris Smith. If you are in the Greater Wellington region, this seminar is not to be missed. Pre-registration is essential due to limited seat numbers. Contact Julia Mahony on 06 304 8441 or email email@example.com without delay. Parkinson’s Northland will host a seminar on Monday 31 October in Whangarei. Speakers will include Director of the Centre for Brain Research Professor Richard Faulls, neuroscientist Dr Maurice Curtis
WINNER: BILL BARCLAY
THE PARKINSONIAN READERSHIP SURVEY TEE SHIRT WINNERS Congratulations to Bill Barclay, Trevor Vernon, Ewen Paynter, Sharon Jester, Wilma Davies-Colley, Ross Levett, Brooke Williamson and Glynnis Gutteridge who all won a tee shirt or a running singlet in The Parkinsonian Readership Survey 2016 prize draw. Our winners came from around the country, from Northland to the West Coast. Bill and Glynnis even sent in photos of themselves wearing their tee shirts. A big thank you to everyone who took the time to respond to the survey.
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 Follow us on Facebook www.facebook.com/parkinsonsnz & Twitter @Parkinsonsnz
Please do not interpret anything in this magazine as medical advice. Always check with your doctor. The appearance of any article or other material in this publication does not imply the agreement of Parkinson’s New Zealand with the opinions expressed therein.
Published on Dec 14, 2016