VOL. 18 – NO.2
Apps to keep your brain engaged! People are increasingly realising that exercising the mind is a really important part of a healthy daily routine. By using applications, or “apps,” on phones, iPads and other technology you can maintain and improve your brain health and reduce the risk of dementia. We took a look at what is available. A number of apps – defined as self-contained programs or software designed for a particular purpose – are of particular interest to people with Parkinson’s, their carers, families and health professionals. The team at the Parkinsonian had a look around and discovered some brain games that you can play online or put on your phone or other mobile device to help keep your grey matter active; meditation apps and better sleep and positive psychology apps that may help you feel better about your life and live more in the present moment. We’ve just “tipped our toe in the water” and we recommend readers search online for more information (we have listed websites to visit to find out more about the app next to its title). Typically you download the app through either the Google store (for android) or iTunes (Apple).
BRAINGLE (www.braingle.com) This claims to have 15,000 brain teasers, riddles, logic problems, mind puzzles and optical illusions. The Braingle team do not guarantee their games boost cognitive function, but they’re at least a fun way to spend a few minutes away from your worries.
LUMOSITY (www.lumosity.com) Lumosity provides fun games that the website claims build flexibility, attention, memory and problem solving among other neurological properties. Users identify capabilities they would like to build and Lumosity creates a personal programme for them with games to support their goals.
CALM and GET SOME HEADSPACE (visit the Google app store)
Deciding on apps for your phone or other device. • It pays to be aware how much space certain apps take up on the device. For example one we were going to download took up 86.2 MB which was too big for our laptop. • Many regular versions of apps are available for free with more advanced apps available for a (usually pretty small) price. • Apps like anything have their own pros and cons. Some have good graphics; others look decidedly 1990s (which is an age ago in the techie realm). Others use language that’s a perhaps a bit hyped for some users who may prefer a more down to earth approach.
Studies have suggested that meditation helps manage symptoms of anxiety, depression, sleep problems and even pain and high blood pressure. Calm is a meditation app that offers several free guided meditations, soothing background sounds and reminders to take a break throughout your day. Get Some Headspace offers similar features and is also available on Android devices. Get Some Headspace also lets you record your meditation sessions and monitor your progress.
SLEEP as ANDROID and SLEEP CYCLE (APPLE) For Android and iPhone respectively these apps track your sleep overnight and show graphs of your sleep patterns over time. Both apps also function as alarm clocks, and will wake you up with soothing nature sounds or soothing music. Sleep Cycle can track your tossing and turning, and Sleep as Android monitors sounds in the room to catch your snoring, talking in your sleep or even catch potential sleep apnoea.
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DAILY YOGA (www.dailyyoga.com)
Like the brain-training website, Lumosity, Happify aims to change the way you think through activities and games, this time with the goal of building a happier you. Start by choosing a happiness track – free options include “Conquer your Negative Thoughts,” “Cope Better with Stress” and “Grow Your Inner Strengths” – then complete weekly activities that aim to hone happiness skills. The app also hosts articles and community features so you can connect with others who are working to maintain a more cheerful mind set.
With a database of more than 400 poses, this app offers guidance to beginners and advanced yogis alike. Yoga can be a great way to relax before bed, stretch tired muscles and get a good workout, too. Like always, talk with your physician before starting a new exercise regime.
ASK THE CLINICAL LEADER Q: I AM ON THE WAITING LIST FOR A KNEE REPLACEMENT. HOW SHOULD I PREPARE FOR HOSPITAL WITH MY PARKINSON’S? A: Being in hospital can mean a change in routine and unfamiliar
surroundings that can put unwanted stress on you but with a little planning this can be reduced. To equip the health team who are going to look after you, they need to know as much about you and your Parkinson’s. This understanding will give you the best possible care throughout your stay. Bringing a bag prepared to inform them is a great start. Make sure you have in your bag – • a current list of all of your medications for Parkinson’s and other conditions and your schedule for taking them (dosage and timing) • actual medications in their original containers and instructions about how you take them — for example, with water, with or without food • Fact sheets on Parkinson’s and Tremor, Parkinson’s and Freezing and Medications used in the Treatment of Parkinson’s: A guide for People with Parkinson’s and
those who care for them booklet. These can be found on the Parkinson’s website www.parkinsons.org.nz • a list of phone numbers for family members and friends • a list of your particular Parkinson’s symptoms and any activities you need help with (for example, dressing or turning in bed) • if you are able to take your own medications then a letter from your doctor saying that you can take your own Parkinson’s medications • copies of legal documents including any Advanced Care Planning decisions Remember, you are the best person to talk about your own Parkinson’s and your family can reinforce the information when you are unable to. You can also request your Parkinson’s Community Educator be available to educate hospital staff in preparation for your care. Take charge and prepare ahead of time.
Q: MY HUSBAND HAS BEEN A MEMBER OF THE PARKINSON’S SOCIETY FOR SEVERAL YEARS AND UNTIL RECENTLY HAS BEEN VERY INDEPENDENT. HOWEVER, HE SEEMS TO BE GETTING SOMEWHAT WORSE AND I HEAR THAT PHYSIOTHERAPY CAN HELP. IS IT TOO LATE AND WOULD HE BENEFIT FROM THIS? MY QUERY IS HOW DO WE GET MY HUSBAND STARTED WITH PHYSIOTHERAPY? A: Keeping active is very important for physical and mental health for anyone with Parkinson’s and it is never too late for your husband to start a physiotherapist or a physiotherapy programme. Contact your Parkinson’s Community Educator for Parkinson’s run exercise options available in your area or options provided by other groups. We offer a variety of exercise groups like Hydrotherapy, Tango Dancing, Exercise Classes, Tai Chi and Nordic Walking.
Your Parkinson’s Community Educator is also able to refer your husband for Physiotherapy through your local hospital or you can choose to look at private physiotherapy options. Parkinson’s New Zealand also has a variety of fact sheets and exercise brochures for workouts he can do at home, a popular one is Keep Moving: an introduction to Parkinson’s and exercise and it is available on our website www.parkinsons.org.nz
A WORD FROM THE CHIEF EXECUTIVE
Tena Koutou Katoa It is a year of introductions, we welcome the new Board and introduce our three new members; Susie Abraham from Northland, Judy Clarke from Hawkes Bay and Jan Griggs from Central Plateau. The Board has now representation from all corners of New Zealand. We continue our introductions at the National AGM in April, welcoming many new delegates, the concept of Optogentics through the eyes of talented Dr Louise Parr-Brownlie, changes in Incorporated Society Act, XRB reporting and the new Health and Safety at Work Act. While these changes may be daunting for the Divisions we are confident that with the lead in time and preparation we will be ready for this to happen. With technology and the advancement of smart devices, we are seeing an increase in the production of applications that can be used as tools to help in our daily life. Our front page and Carers Corner introduce a variety that ‘apps’ that stimulate the mind, measure our sleep patterns or track our daily activities. I have been told that if you need any help downloading one of these apps or learning how to use them, ask one of your grandchildren, they are wise in the way of technology. Our factsheet promoting brain health reminds us that we all need to practice and practice. I will be getting together with
friends and family for a game or two of cards and a Sunday lunch over the next few months. Inside activities in the cooler months allow for more relaxation, time to tackle a more difficult crossword and challenge a family member to chess. I would like to share with you the enthusiasm of John Stockwell (pg 9) and his ride throughout New Zealand. I had the opportunity to catch up with him at a number of events around the country. Thank you to many Divisions and Branches who arranged and hosted him. John is a motivational speaker who left many in the room thinking about motorbikes and the open road. Lastly we would congratulate Deirdre O’Sullivan, Chief Executive and her family as they welcome a daughter to their family. We hope you enjoy this addition of the Parkinsonian, keep warm over the winter months and get the opportunity to trial some of the new technology apps.
Stephanie Clare ACTING CHIEF EXECUTIVE AND CLINICAL LEAD
NEWS & RESEARCH
LOOKING FOR PARKINSON’S SOONER
CLUES TO HOW DBS WORKS
By the time someone is diagnosed with Parkinson’s many people have already had the condition for years or have symptoms that were progressing towards it. Researchers are looking for ways to find Parkinson’s early enough to start effective treatment before irreversible damage has taken place. A new study has brought this goal a bit closer.
In deep brain stimulation (DBS), neurosurgeons implant a device that delivers electrical signals to inner brain structures involved in movement. In most Parkinson’s patients who receive the treatment, symptoms of slow movement, tremor and rigidity rapidly diminish after the device is activated. Yet despite its effectiveness, there has been little understanding of how DBS works.
The study, conducted among more than 54,000 British men and women, found many symptoms that were more likely to be present in people who years later were diagnosed with Parkinson’s. Many neurologists think the damage caused by Parkinson’s begins long before motor symptoms like tremors, rigidity and unsteady gait develop and a diagnosis can be made.
In a recent experiment, Dr Starr, a neurosurgeon at the University of California, San Francisco, and his colleagues believe they found a clue. The new research published online in April in Nature Neuroscience reveals that DBS may counter Parkinson’s symptoms by freeing the brain from what researchers call “an electrical lockstep”.
The study, by Dr Anette Schrag and colleagues at the University College London, was published in The Lancet in January. As many as five years before a diagnosis of Parkinson’s, those who developed it were more likely to have experienced tremor, balance problems, constipation, low blood pressure, dizziness, erectile and urinary dysfunction, fatigue, depression and anxiety.
Among other things, Parkinson’s changes the brain’s electrical rhythm. Dr Starr and his colleagues wondered if this change might lead to some of the symptoms of Parkinson’s. To find out scientists planned out a series of experiments during surgeries to implant DBS devices. They temporarily placed a strip of sensors on a region in the brain called the motor cortex and monitored the signals coming from neurons in different parts of the brain.
The prediagnostic symptoms associated with Parkinson’s are common and quite nonspecific so neurologists are also searching for biomarkers that would identify those most likely to develop Parkinson’s. Researchers are also looking for ways to stop or slow the progression of Parkinson’s in people at risk or onset. www.thelancet.com well.blogs.nytimes.com
SECOND PARKINSON’S VACCINE REPORTS POSITIVE SAFETY RE SULTS Irish biotechnology company Prothena recently reported positive safety results in a Phase I study for its vaccine to slow the progression of Parkinson’s. Prothena’s immunotherapy approach introduces an antibody (called PRX002) against the protein alpha-synuclein, which clumps in the brain cells of people with Parkinson’s. Researchers believe that clearing out the clumps of alpha-synuclein will protect the brain cells from damage. Prothena’s news follows an announcement last July from Austrian biotechnology company AFFiRiS that its vaccine against alpha-synuclein was also safe and tolerable in a Phase I study. While both are immunotherapy drugs, the vaccine from AFFiRiS prompts the body to produce the antibody against alphasynuclein while Prothena is introducing the antibody directly. Researchers found that the vaccine from Prothena was safe and tolerable and that it was associated with lower alpha-synuclein levels, a promising but early finding. For more information about the AFFiRiS announcement, see the December 2014 issue of The Parkinsonian. www.michaeljfox.org
The scientists found that parts the motor cortex were more tightly synchronised in people with Parkinson’s than in people without the condition. The scientists hypothesised that this “lockstep” or excessive synchronisation might help account for the problems people with Parkinson’s have with movement. Perhaps it’s hard for their brains to break out of synchronisation and generate a new pattern of signals that can start moving the body. Dr Starr and his colleagues suspected that DBS affected this synchronisation in people with Parkinson’s. In another round of surgeries, the scientists monitored the motor cortex before people’s implants were switched on and then observed it again afterward. They found that DBS caused the motor cortex to become less synchronised. While synchronisation may cause some Parkinson’s symptoms, it probably doesn’t account for all of them. Scientists hope the new study could lead to better implants. It might be better to design implants that only deliver a pulse when the brain becomes too synchronised. www.nytimes.com www.lancet.com
THOUSANDS HAVE ALREADY SIGNED UP FOR APPLE’S RESEARCHKIT In March Apple Inc. announced the launch of ResearchKit and a series of apps designed to gather clinical data through your iPhone. The software allows researchers to create apps so people with Parkinson’s and other conditions including breast cancer, asthma, diabetes and cardiovascular disease can share their data with medical researchers. Thousands of volunteers have already signed up.
The Parkinson’s app, called mPower, was developed by The Michael J. Fox Foundation and Sage Bionetworks. It is currently only open to US residents over the age of 18. The app includes a finger-tapping test to determine speed of movement, a walking test to check gait and balance, a voice test and a memory test. It is hoped the app will help researchers and those living with the condition to better understand the symptoms of Parkinson’s. Some concerns have been raised about what this news means for medical research. Apple said it doesn’t collect or see any of the patient information that researchers gather. Apple has asked that all apps have an independent ethics board review the work to make sure that the people who are participating in it are properly informed about the risks, know how everything will run and that the questions that are being asked are valuable questions. www.michaeljfox.org www.parkinsons.org.uk
For example, if someone was taking one Sinemet pill five times per day (five total) they may need three pills of RYTARY three times per day (nine total) for the same effect. That’s because the effect of RYTARY spans over four to five hours. More of the drug is needed to cover that time. However, the risk of dyskinesia is lower because of the medication’s bioavailability. It releases slowly over time so levels don’t rise to where they can cause too much movement. If you have any questions about your medications, please contact your doctor or your Parkinson’s New Zealand Community Educator. www.michaeljfox.org
PARKINSON’S PEN VIBRATES TO IMPROVE LEGIBILITY Parkinson’s causes tremors or stiffness that can turn everyday tasks such as eating or writing into frustrating chores. A few years ago a company called Liftware developed forks and spoons that respond to shaking by steadying the utensil.
PROMISING RESULTS FOR A NEW LIQUID FORM OF LEVODOPA A recent clinical study by pharmaceutical company Neuroderm has drawn attention to a new liquid form of Parkinson’s drug levodopa. The study involved 16 people with advanced Parkinson’s who were given continuous infusion of the drug under their skin from a pump worn on a belt. The liquid levodopa was able to maintain stable, high levels of levodopa in the blood. Levodopa is an effective treatment for many people with Parkinson’s. It is normally taken as a tablet but as the condition progresses these tablets work less well, which leads to “off periods”.
Researchers are developing a new pen called the ARC pen, which was designed to vibrate to stimulate muscles in the hand, helping to reduce the effort that is required to move the pen across paper. The vibrations could help people with Parkinson’s with writing and drawing. People with Parkinson’s can experience hand cramping when attempting to write, which makes their writing very small and difficult to read. This condition is known as micrographia and can be an early sign of Parkinson’s.
There is already a gel form of levodopa called duodopa which is pumped continuously into the intestine. But duodopa treatment requires surgery and is very expensive.
The researchers, who formed a company called Dopa Solution, found in an initial trial that 12 out of the 14 people with micrographia improved their writing with their vibrating prototype ARC pen. They were able to write larger, clearer letters than they could with a normal pen.
The new liquid form of levodopa is a promising future treatment for advanced Parkinson’s which could help reduce “off periods” and help people with Parkinson’s stay in control.
Parkinson’s can also make pens painful to hold and control. Prototypes of the ARC pen show an ergonomic design that looks like it could be held more comfortably than normal pens.
Dopa hopes to also develop make-up tools, brushes and computer mice that work like their pen. For more about the LIftware spoon, see the June 2014 issue of The Parkinsonian.
RYTARY GETS FDA APPROVAL The U.S. Food and Drug Administration approved a long-acting oral capsule formulation of carbidopa levodopa (levodopa). That drug called RYTARY (pronounced rye-TAR-ee) is meant to allow Parkinson’s patients more “on time”.
Participants in a Phase III clinical trial experienced nearly an hour and a half less “off time” per day when taking the drug, as compared with carbidopa levodopa plus entacapone, another drug to lengthen efficacy of levodopa. A Phase III trial is a detailed evaluation of a promising new treatment. People trying this new medication may be surprised by the number of capsules in each dose, even though there are fewer doses per day with RYTARY.
Annual General Meeting This year’s AGM in Wellington on Friday 17 April and Saturday 18 April started with a little singing therapy – Neil Diamond’s Sweet Caroline and Dancing Queen by Abba to be specific. This set the scene nicely; helping everyone feel relaxed and focussed on our time together, the business to be covered and a good catch up.
AGM GROUP 2015
The singing was followed by a time for reflecting on the events of the year and celebrating our successes. The Divisions and Branches provided summaries of the previous year in each of their areas.
A Board member spoke about a number of pending changes for the not-for-profit sector related to the Incorporated Companies Act, new financial rules and expectations around governance in the name of increased transparency.
As an organisation we made a number of important operational changes in 2014 that were of strategic significance. The establishment of our new Parkinson’s Community Educator service (replacing our Field Officers), integral to which was our new competency framework, has been viewed with admiration across our sector. An important tool associated with this is our powerful new database. The novelty of our creativity competition for Parkinson’s Awareness Week was noted too.
On Saturday Dr Louise Parr-Brownlie, a neurophysiologist and lecturer in the University of Otago’s Brain Health Research Centre, spoke on her world-leading work in optogenetics. This is being termed a revolution in brain science. Her session was informative, leaving the room feeling inspired by the future endeavours of scientists. We would like to thank everyone who contributed to making the AGM such a success.
New Board Member Profiles
Judy was a member of the Podiatry Special Interest Group, and part of the New Zealand Society for the Study of Diabetes.
She served on the Board of Trustees for a local primary school for six years, including two as Chairperson.
Diagnosed with Parkinson’s three and a half years ago, Susan has been involved with our Northland Committee for the past two years. She was the recipient of the local Carpe Diem Award in 2013. Over her career she has worked as an antenatal educator, fundraising manager, primary school teacher, specialist reading teacher and handbag designer.
July is currently on the committee of Parkinson’s Hawkes Bay and has taken on the role of Staff Liaison Manager. She has been married to Peter for 31 years and they have two children who are attending university, one in Auckland and the other in Wellington.
Currently she works work part-time as a Marriage and Civil Union Celebrant. She is a Justice of the Peace. Susan was a class leader for antenatal classes at Whangarei Parents Centre in the late 1980s, was Chairperson of the Whangarei Boys High School Board of Trustees from 1998 to 2001 and has also served on a primary school Board of Trustees.
She is 60 years old, married to Ron, a GP, and mother to four adult sons.
Jan has been member of Zonta International for 18 years and has served as President and Treasurer. Currently also a member of Spectrum Rotorua, with 14 years membership behind her, she has also held the positions of President and Treasurer in that organisation.
JUDY CLARKE After being diagnosed with Parkinson’s eight years ago, Judy says, her life has taken on a complete change. She was a self-employed podiatrist with her own practice in addition to working part time at the diabetes centre at Hawke’s Bay District Health Board. She is now retired.
Jan retired 13 years ago after working in the banking sector for her whole career in one of the major trading banks. She is also the Chairperson of the Parkinson’s Central Plateau Division and has been in the role for two years.
Her interests include travel – she has visited more than 50 countries; gardening and textiles. These days she enjoys patchwork with embroidery and beadwork. Jan is married to Don and they have two daughters and a granddaughter. Their girls live in Rotorua and Napier.
Brain Health There is much importance given to medication in Parkinson’s management. However exercising, relaxing, expressing yourself creatively and retaining a good social life promote brain health, which in turn can help reduce both your motor and non-motor Parkinson’s symptoms.
EXERCISE It is already well established that exercise can help people with Parkinson’s maintain and improve their mobility, flexibility and balance. Recently we have discovered that exercise may also help enhance the connections between neurons. It is not only what we may think of as more traditional exercise that can help people with Parkinson’s. Music has a special place in brain health and has been shown to spur healthy brain activity. Dancing is helpful, as is singing to music. Specifically music like the Tango, with a metric beat can improve cognitive processes, reduce fatigue and enhance functional mobility in Parkinson’s. Movement is the key and as another example, even non-contact boxing has been associated with more fluid body movements. On the psychological front, exercise is a powerful antidote to depression for many reasons. To get the best out of your exercise, you will want a routine that motivates you. Regular Parkinson’s exercise classes are a great start. It’s advisable to set yourself a realistic plan and stick to it. It’s easy to try to do much too early, which means your enthusiasm may wane because you are overly tired or find it excessively difficult to meet your goals. You can notch up the expectations you have of yourself once you have your routine well established. It may help you to envisage the realistic results you are aiming for while you’re exercising. People have different body clocks, so it’s a good idea to exercise at the time of day that suits you best. Perhaps in the mornings to help you fully wake up, or in the evenings to help you wind down.
discovery that brain cells can be replenished in adult brains, it is now clear that new pathways of communication may form between brain cells and areas of the brain that are used intensely can increase slightly in size. Many people find taking up new things they do not know much about can be stimulating. For instance, learn a new language; learn how to sail, or play cards. Anything that involves concentration, learning and focus supports brain health. Exercises, such as memorising lists, can improve your memory and speed up your recollection. Try reading aloud to someone, perhaps a grandchild, regularly as this can help mental development. Games like Sudoku, crosswords and chess provide a challenge and embarking on a creative activity such as drawing or creative writing may provide a welcome distraction, especially if you’re feeling down. Well-designed brain training gym type programmes and apps may help alleviate or slow cognitive decline. It’s important that we take time for ourselves and focus on things outside of ourselves that we enjoy and creativity is perfect for doing this.
RELAXATION There is evidence that long-term stress, depression and anxiety can impair brain function, so learning relaxation techniques is invaluable. Meditation is one option. It can lower blood pressure and help with concentration, even when you are not meditating. This may help you sleep more soundly, which is important for relaxation and brain health. Tai Chi is becoming increasingly popular among people with Parkinson’s as a form of relaxation and exercise.
As a rule, good nutrition for the body is good nutrition for the brain. However there are some foods that are especially efficacious for brain health and others that aren’t. Omega Three oils help our brains to function better, improve concentration and lessen depression. These oils are abundant in fish, walnut and flaxseed. Research suggests antioxidant vitamins E and C may help protect brain cells. You want to avoid excessive unhealthy foods. It is advised caffeine and alcohol be enjoyed in moderation only.
CREATIVITY Creativity in some form is within reach of all of us, not just people endowed with artistic talent. Creativity involves a cognitive brain process which helps develop mental function. It is not limited to the arts—there is creativity in science and mathematics, in fact in any kind of problem solving. In addition to the very significant
Maintaining current friendships and building new social relationships can be of real value too. Parkinson’s can make people feel isolated at times. It’s vital therefore that you do what you can to maintain the friendships you currently have, and seek out new friendships. The research increasingly shows that social contact is central to our psychological well-being. We humans are social animals after all. You may find the people you meet through joining your local Division or Branch of Parkinson’s are a good support because they are experiencing or have experienced at least some of what you are going through. Source: Parkinson’s Association Ireland
Apps to help you care Further to our front page story we have looked around for some apps of interest to carers. With technology racing ahead at high speed, these days when people are faced with a problem or challenge, they increasing ask “is there an app for that?” There are indeed a number of apps targeted at people who care for others at home, and for people with Parkinson’s. Apps can help carer’s keep themselves relaxed, fitter and more psychologically resilient to care more effectively. With these apps, there is usually a free basic version and more complicated and deluxe versions are available if you are willing to spend a little. As with our front page story about apps, we’ve just “tipped our toe in the water” and we recommend readers search online for more information. If you use apps and know about them or you are just learning about them and you have some insights to share please tell us on our Parkinson’s Facebook page or email us on email@example.com. It’s also helpful to tell people at your Parkinson’s carer’s group or other Parkinson’s related groups about useful apps that you hear about. 8
Helpful websites where you can read more about the pros and cons of particular apps and app reviews include www.mindfulness.com, www.psychcentral.com and www.webmd.com. For a story about apps for brain health see the front page.
FIG (www.fig.com) The Fig app is good for carers for looking after themselves and tracking their tasks and describes itself as “your personal wellness guide for body and soul.” It allows you to track progress on a wide variety of
activities, from eating healthy to drinking enough water, and even calling your family to say thank you. You can tell the app how many times a day or week you’d like to complete the activity and receive reminders when you need them.
LIFT PULSE 2.0 (www.tremortalk.com) This is an app that carers can use with people they are caring for, especially if smooth movements on keyboards are tiring or just plain difficult. A smart phone app created by Lift Labs, has released the results of data gathered from users since updating the app in June 2013. Lift Pulse 2.0 includes a journal feature that measures and records tremors. It also records what medications someone is taking for tremor and how they are doing with sleep, exercise and stress. The app stores journal entries anonymously in Lift Lab’s private database. You have access to this data through your phone and computer, and Lift Lab analyses it to provide you with information on how different factors affect your tremor.
IBIOMED (visit the app store on iTunes) Essentially a program that allows a caregiver to keep a detailed log for the person they are caring for. You can create a profile for your loved one, the online information says, and add data on what medications they’re taking, what tests they’ve had, any special diets or supplements they may be on, and places to take notes on their day-to-day condition. Carers may want to read our front page story for more information on exercise and relaxation apps.
“Shifting Gears – The Ride Continues” Fundraiser To say John Stockwell of Stone Hut, South Australia, likes a challenge is an understatement. John, originally from New Plymouth, has Parkinson’s. He drove more than 22 000 km around Australia for three months on one of his beloved Ducati motorcycles last year to raise Parkinson’s awareness, lift people’s spirits and raise some funds on the way. This year he drove around much of the North and South Islands from late February until mid-April to do the same and he’s now mulling over doing a big ride around the United States! Calling himself a medical condition with a motorcycle problem, John’s love of motorcycling is apparent even if you talk with him for a very short time. He says he’s happy when he’s on a motorbike and he has never owned a car. He has clocked up half a million kilometres on one of his bikes. It’s no surprise then that a highlight of the New Zealand tour was meeting Bert Munro’s of the World’s Fastest Indian fame’s real next door neighbour in a shop in Invercargill. He attended meeting’s around the country as well as motor bike rallies and special events, clocking up a significant amount of media coverage along the way. Meeting other people with Parkinson’s and hearing their stories is a big thrill for John and he hopes people find his positive approach to living with Parkinson’s inspirational. Lifting people’s spirits is close to his heart. His tour was called shifting gears, a reference to his increased difficulty in changing gears because of his Parkinson’s symptoms. He also estimates he raised a few thousand dollars while travelling around Aotearoa.
ANDREW DUNN AND JOHN STOCKWELL
You can still donate to John at www.fundraiseonline.co.nz/JohnStockwell/
Get Going: Outward Bound 2015 The UPBEAT members who attended Parkinson’s New Zealand’s 2015 Outward Bound course earlier this year experienced a stark lesson in determination and the power of positive thinking to help you keep going when the going’s tough. Rob Logan from Christchurch, who was diagnosed in 2010, particularly enjoyed the challenge of the six day Outward Bound course. Rob attended with eight other people (two men and six women). The team was accompanied by several Outward Bound instructors. “We were up at 6am and went to bed at 11pm each day. Although it was more intensive than I expected, we all coped well with the work load. “ Rob says that just after arriving they went for a walk in nearby mud flats and rolled around in the mud. He says this was a great icebreaker. “It was really cool.” They then made their way to a jetty where they jumped into the very cold water to wash off the mud. .
A watershed moment for Rob was completing a number of activities on the high wires, about 10 metres up. He was not confident with heights and didn’t think he could do it. However, he says, 90 per cent of what you do is attitude. In the end, he says, he was swinging between the trees. It was empowering he says “You just do it.”
“You get so much encouragement and people had things like ‘just do it’ written on their hands. “Although scary at the start, by the end, although exhausted, I was feeling great!” They rowed cutters and kayaks and spent a night out in the elements. “Team work was vital and we got to know each other well.” “You can do a lot more than you think you can do.” “You are sharing a dormitory room with all the others and for washing you just have a few tubs, there’s sometimes soap. It’s pretty basic stuff. But you do not have distractions and you are so focussed. When I first got to the course I had a walking stick with me but I left it in the bedroom after arrival and did not use it again. You are very single minded about what you are doing.” Parkinson’s New Zealand thanks Douglas Pharmaceuticals for sponsoring the Outward Bound Course.
PRACTISING OUR TECHNIQUE FOR ROWING THE CUTTER
SCOTT WATCH HAVING A BITE TO EAT
Averil Carey from Wanganui found Outward Bound a “life-changing journey.” “When I was diagnosed with Parkinson’s in 2008, I never imagined this in my wildest dreams. I was at a stage in my life of being frightened of the future. I was increasingly allowing Parkinson’s to define who I was and what I did.” Averil has praise for the Outward Bound instructors who, she says, pushed the participants physically, mentally and emotionally. “The amazing, professional and passionate Outward Bound instructors Chee, Michelle and Meg encouraged us to extend ourselves. They encouraged us to be positive put other people’s interests before our own and show compassion at all times. “I was personally challenged as never before. I ran the morning runs in times I hadn’t run since pre-Parkinson’sdays. I completed the high ropes course 10 metres above the ground; I slept out under the stars; I shared my deepest thoughts with people I had just met. I failed lots; I succeeded lots; I cried lots but I came looking at everything in a new light, feeling that a door is open and the sun is shining in. No longer will Parkinson’s define who I am.”
IRIS & ERIC NANKIVELL CHARITABLE TRUST
PARKINSON’S NEW ZEALAND | PO Box 11-067, Manners St, Wellington 6142 Phone 04 472 2796 | Freephone 0800 473 4636 (0800 4PD INFO) | Fax 04 472 2162 Email firstname.lastname@example.org | Web www.parkinsons.org.nz www.facebook.com/parkinsonsnz & Twitter @Parkinsonsnz Follow us on Facebook
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.
NEWS FROM AROUND THE COUNTRY
THE SPECIALISED ART OF NUT TASTING.
NUT PICKING INVOLVES SPECIALISED EQUIPMENT.
Up and down the country people ran information stands, street appeals, seminars and took part in newspaper articles to help raise awareness of living with Parkinson’s and of the work of Parkinson’s New Zealand. World Parkinson’s Day was a particular focus for many of our regions. Here is just a selection of what our wonderful volunteers and members have been up to.
The Hawke’s Bay Hospital Education Centre in Napier was filled to capacity for a Parkinson’s Hawke’s Bay World Parkinson’s Day seminar in April.
Over 100 people attended a free World Parkinson’s Day public seminar on 10 April hosted by Parkinson’s Auckland. The topic was “Parkinson’s and your plumbing.” The speakers were Dr Anna Lawrence, an urologist specialising in neuro-urology, Janet Thackray, a central continence nurse from Auckland DHB, and Judy Hattie, a continence management specialist from Continence New Zealand.
Local neurologist Dr Bethany Jones spoke about motor symptoms and medications. Hilary Sye, community physiotherapist, spoke about daily living aids; Pip Acock from Hospira spoke to medical professionals about Apomine; cognitive issues and dementia were amongst the non-motor symptoms discussed by Dr Ian Hosford; Amy Maunder, a speech therapist from the DHB explained how Parkinson’s affects speech; and Auckland movement disorders nurse, Lorraine Macdonald, talked about the benefits of deep brain stimulation.
TARANAKI Parkinson’s Taranaki had a tour and morning tea at a macadamia farm at Oakura, near New Plymouth, in April that attracted 23 members, carers, spouses and family. Visitors walked around the farm’s 500 macadamia trees. The morning began with a nut tasting, which involved trying to match different pastes/spreads of nuts with 8 different nuts. Cakes and afghan biscuits with macadamia nut fillings were also on the menu.
WAIKATO Dr Chris Lynch from Waikato DHB spoke at another World Parkinson’s Day seminar in Hamilton on 10 April. Dr Lynch covered current opinions in neurology, atypical Parkinsonism and treating tremor and more than 50 people attended.
KAPITI/HOROWHENUA The Big Walk was held on 11 April 2015 as part of the events for World Parkinson’s Day and also included yoga breathing, BIG exercises and stretches, a Parkinson’s and dance exercise class and a Tai Chi taster at the Waikanae Memorial Hall.
Published on Jun 2, 2015