VOL. 20 – NO.4
Parkinson’s Awareness: 200 Years of Parkinson’s Is Too Long It’s been 200 years since English physician James Parkinson first described the condition named after him in An Essay on the Shaking Palsy. Volunteers were out in force around the country during Parkinson’s Awareness Week (1-7 November) to send the message that 200 Years of Parkinson’s Is Too Long and raise much needed funds to support people affected by Parkinson’s. Thank you to everyone who participated in Parkinson’s Awareness Week. There were bucket collectors and information stands on the streets, in malls and community centres. We had coverage in national and local media, and people shared their stories on Facebook and Twitter. Parkinson’s New Zealand wants to remind people to continue to get involved. You can explore our resources, volunteer for your nearest Parkinson’s branch or division or national office throughout the year and share your story on the #ParkinsonsNZ hashtag.
CHLOE SWARBRICK MP AND GORDON MCTAVISH COLLECTING AT PAK’NSAVE MOUNT ALBERT
Supporting Parkinson’s New Zealand and the thousands of people whose lives are affected by Parkinson’s does not necessarily mean a big commitment. You can help make a difference by making cups of tea or giving someone a ride. If you have a bit of time to give, a full list of our divisions and branches and their contact details are available on our website www.parkinsons.org.nz.
LUKE QIN COLLECTING ON LAMBTON QUAY
HAMISH WALKER MP COLLECTING AT NEW WORLD BALCLUTHA
PARKINSON'S AWARENESS WEEK
Awareness Week around the Country From 1-7 November our network of volunteers and staff were out in their communities to increase awareness of Parkinson’s and raise much needed funds.
SENIOR NEUROLOGICAL PHYSIOTHERAPIST GILLY DAVY
ELEVATE GYM MEMBERS
JAYNE WYLDE, DR JANET TURNBALL AND SHARON MACKIE
People ran information stands, street appeals and seminars to help raise awareness of living with Parkinson’s and support the work of Parkinson’s New Zealand. Here is just a small selection of some of our Awareness Week activities around the country.
Parkinson’s Northland presented a seminar, “200 Years, Is It Too Long to Discover a Cure for Parkinson’s” with guest speakers neurologist Dr Barry Snow and Movement Disorder Nurse Specialist Adele McMahon.
More than 100 people attended Parkinson’s Kapiti Horowhenua’s educational seminar in September. Speakers included neurologist Dr David Bourke and geriatrician Dr Janet Turnbull.
WAIKATO As we go to print, Martin Bennett, his daughter Steph Bennett, and 50 other fundraisers from Waikato, Auckland, Whangarei and Napier are training hard to take up the challenge of the 2017 Tinman Club Triathlon in Mt Maunganui on 19 November. Our thanks to everyone involved for raising awareness and funds for Parkinson’s Waikato.
BAY OF PLENTY Parkinson’s Bay of Plenty held an Awareness Week film fundraiser. Ticketholders enjoyed nibbles before watching the film Tulip Fever.
Parkinson’s Hawke’s Bay held a “Living Well with Parkinson’s” seminar in September. Speakers included Associate Professor Dr Maurice Curtis, neurologist Dr Matthew Phillips, Dr Lucy Hone and senior neurological physiotherapist Gilly Davy.
WELLINGTON Wellington Elevate Gym held a fundraiser with each member doing 10,000m on rowing and cycling machines to represent the 10,000 New Zealanders living with Parkinson’s. “It felt like the toughest workout we’ve done,” one gym member said. The group raised $320 with their hard work.
TARANAKI Parkinson’s Taranaki offered a group question and answer session with neurologist Dr Mark Simpson.
South Canterbury held a fantastic street appeal. They raised over $780. A big thank you to all the volunteers who helped us raise funds and awareness.
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
A WORD FROM THE CHIEF EXECUTIVE
Tena Koutou Katoa I thoroughly enjoyed September’s UPBEAT weekend. Not only did my team and I get the chance to learn more and develop professionally and personally, we also got to catch up with old friends and make new ones. The weekend also served as a reminder of the benefits of socialising among people whose lives have been affected by Parkinson’s. It’s helpful for many people with Parkinson’s and their loved ones to know that others are facing similar challenges and to have the opportunity to compare notes. I would like to thank everyone involved in making this fun and thought-provoking weekend for our early onset members happen. You can read more about what happened during the UPBEAT weekend on page 11 of this edition of The Parkinsonian. I’d also like to take this opportunity to thank everyone who participated in Parkinson’s Awareness Week. Those hours of volunteering in the community do make a difference. Without the generosity of our volunteers and supporters, we would not be able to reach nearly as many people. There has been a buzz of excitement around New Zealand and overseas after ground-breaking research discoveries from Dr Maurice Curtis, Dr Victor Dieriks and the team at the Centre for Brain Research. We provide an update on their most recent work on page 4. We hope you will find a few gift ideas on page 6 to help you finish your holiday shopping and on page 9 we provide some advice for staying well in the summer. On 3 October 2017, representatives from each area, the Council of the Parkinsonism Society of New Zealand, met and agreed to make a change to the legal structure of Parkinson’s New Zealand. This change will mean that Parkinson’s New Zealand
and the divisions and branches will reform as one legal entity, the “Parkinson’s New Zealand Charitable Trust”. Our new structure means we can continue to deliver local services that best support the growing number of people with Parkinson’s and enhance our core Parkinson’s Community Educator Service. We will be keeping everyone updated and informed about next steps and how we will all work together in the future. We wish you a very happy and peaceful Christmas and send our best wishes for the New Year. Meri kirihimete me ngā mihi ote tau hou ki a koutou katoa
CORRECTION The advertisement for disability vehicle supplier Rod Milner Motors in Greenlane, Auckland was wrongly represented in the September 2017 edition of The Parkinsonian. Rod Milner Motors will donate $500 per vehicle sold to each of our members who buys a vehicle from Rod Milner to Parkinson’s Auckland.
NEWS & RESEARCH RESEARCHERS FIND THE KEY TO LOSS OF SMELL IN PARKINSON’S University of Auckland research has found an anatomical link for the loss of the sense of smell in Parkinson’s. The research, “A ventral glomerular deficit in Parkinson’s disease revealed by whole olfactory bulb reconstruction”, was published in the journal Brain in October. It results from the work of Associate Professor Maurice Curtis, Dr Victor Dieriks, Dr Sheryl Tan and Sir Richard Faull. All are part of the Centre for Brain Research. They worked with a research team in Germany. The work in New Zealand was funded by the Neuro Research Charitable Trust, founded by Bernie Crosby, who has Parkinson’s. The work in Germany was funded by the Max Planck Society. Parkinson’s New Zealand is delighted that the commitment and dedication shown by our friends and partners, Dr Curtis, Dr Dieriks and the team at the Centre for Brain Research, have led to this ground breaking research discovery. Loss of the sense of smell is an often overlooked but remarkably prevalent early symptom of Parkinson’s. “A complete loss of smell or a diminished sense of smell often precedes the usual motor symptoms of Parkinson’s by several years,” Associate Professor Curtis, from the Faculty of Medical and Health Sciences, University of Auckland, said in a press release.
The researchers compared the olfactory bulbs from people with and without Parkinson’s and found that the volume taken up by the glomeruli (the functional units of the olfactory bulb) was reduced by more than half in people with Parkinson’s. The researchers discovered that the distribution of the glomeruli was greatly altered. The olfactory bulbs of people without Parkinson’s had 70 per cent of their glomerular component in the bottom half of the olfactory bulb, but the olfactory bulbs of people with Parkinson’s had only 44 percent in the bottom half. The team also calculated the joint volume of all glomeruli in the olfactory bulb. They then compared the values between olfactory bulbs from people with and without Parkinson’s. Findings showed that the number of glomeruli in people with Parkinson’s was reduced by more than half. This research will be followed up with further work to unravel what causes the glomeruli to deteriorate and whether there are any other changes in the olfactory bulb in Parkinson’s. Source: medicalxpress.com | Parkinsonsnewstoday.com
CAN COFFEE HELP TO TREAT PARKINSON’S? NOT LIKELY In 2012, Canadian researchers brought some welcome news for people with Parkinson’s: caffeine may ease symptoms of the condition. But five years on, the research team has revealed that the coffee compound may not be so beneficial after all. The disappointing findings come from a new analysis of more than 120 older adults with Parkinson’s. Compared with participants who were given a placebo, those who consumed caffeine in doses equivalent to around three cups of coffee per day showed no improvements in movement symptoms or quality of life after 6 to 18 months of follow-up.
Dr Ronald B Postuma, of McGill University in Canada, and colleagues reported their results in the journal Neurology in September. From the results of their previous study published in August 2012, Dr Postuma and colleagues believed that they may have identified another promising treatment strategy for people with Parkinson’s, after finding that 6 weeks of caffeine supplementation led to improvements in movements in people with the condition. Their latest study looked the longer-term effects of caffeine supplementation, but it was unable to find any benefits for people with Parkinson’s. The new research included 121 adults aged 62 years on average. All of the participants had been diagnosed with Parkinson’s at least 4 years prior, and they were followed-up for between 6 and 18 months. Half of the participants were given 200 milligrams of caffeine twice daily—which is the equivalent to around three cups of coffee each day—while the remaining participants were given a placebo. The researchers note that the caffeine-consuming participants began with a placebo and gradually increased their caffeine dose over the first 9 weeks, reaching 200 milligrams twice daily at week 9. This was to help them adjust to the caffeine. Upon accessing the movement symptoms and quality of life of the participants, the researchers were unable to identify any differences between participants who took caffeine and those who took the placebo. “While our previous study showed possible improvement in symptoms, that study was shorter, so it’s possible that caffeine may have a short-term benefit that quickly dissipates,” Dr Postuma said in a press release. The current evidence indicates that for people with Parkinson’s, that coffee is unlikely to offer any benefits for movement. Source: Medicalnewstoday.com
SINGING HELPS PEOPLE WITH EARLY ONSET PARKINSON’S RETAIN SPEECH, RESPIRATORY CONTROL Singing may help people with Parkinson’s—especially in its earlier stages—because it strengthens muscles involved in swallowing and respiratory control, suggests two studies from researchers at Iowa State University (United States). One study, “Therapeutic singing as an early intervention for swallowing in persons with Parkinson’s” was published in the journal Complementary Therapies in Medicine in April. The other, “Effects of singing on voice, respiratory control and quality of life in persons with Parkinson’s disease,” appeared in Disability and Rehabilitation in March. Previous research has suggested that singing can ease voice impairments and improve respiratory control in people with other conditions, leading researchers to examine if it could also aid those with Parkinson’s, especially in the condition’s early stages. Lead author Elizabeth Stegemoller conducted two separate pilot studies to determine whether a group of 25 people with
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Parkinson’s would benefit from light therapy, singing for 60 minutes once a week, or more invasive therapy that involved singing for 60 minutes twice a week. Certified music therapists conducted the sessions, which included vocal and articulation exercises as well as group singing. After eight weeks, the researchers measured vocal, respiratory and quality-of-life parameters. Results showed that both groups had significant improvement in respiratory pressure, including both breathing in and breathing out. Phonation time, a measure of how long a person can sustain a vowel sound, also significantly improved. Patients also reported significant improvement in measures of both voice-related and whole health-related quality of life. “We’re not trying to make people better singers,” Stegemoller said in a press release. “We’re trying to work the muscles involved with swallowing and respiratory control, to make them work better and therefore protect against some of the complications of swallowing.” The goal now is to expand the initiative, she said. Source: parkinsonsnewstoday.com | medicalnewstoday.com
SINGING AS THERAPY Robin Matthews, Speech Language Therapist and PhD candidate from Tauranga, is doing his thesis on whether singing and music activities may improve voice and well-being in people with Parkinson’s. Robin is assisted by Professor Suzanne Pudry and Professor Lynette Tippett from the University of Auckland. Participants from the Bay of Plenty and Waikato have been involved in the study. We look forward to sharing the results from Robin’s research in The Parkinsonian. His work will provide more evidence about how singing may help people with Parkinson’s.
HOW A SIMPLE DRAWING TEST CAN DETECT PARKINSON’S Drawing a simple spiral may be able to determine whether or not a person has Parkinson’s far enough in advance to allow preventative treatment, an Australian study has found. The study, “Distinguishing Different Stages of Parkinson’s Disease Using Composite Index of Speed and Pen-Pressure of Sketching a Spiral,” appeared in the journal Frontiers in Neurology in September. Led by chief investigator Dinesh Kumar, the team behind the new diagnostic software hopes its discovery can one day become a standard screening test to spot Parkinson’s in its earliest stages with a simple drawing test. The tool has shown promising results already. The study claims the tool can automatically detect whether a user has Parkinson’s or not with 93 per cent accuracy. Kumar said the customised software his team has developed records how a person draws a spiral and analyses the data in real time. The software is designed to be easy to use, which means it could be operated by a GP or nursing staff. The study involved 62 people with Parkinson’s, half of whom had no visible symptoms. The other half were mildly to severely affected by the condition. Comparing the effectiveness of different dexterity tasks, including writing a full sentence, individual letters and sequences of letters, as well as sketching a guided Archimedean spiral, the team determined that the spiral was the most reliable and the easiest for participants to complete. Researchers measured the speed and pressure a person made while drawing the spiral. This allowed researchers to distinguish not only people with Parkinson’s from controls, but also people with different severity of the condition. The data from the Australian study will need to be used on significantly larger numbers of people before it can be introduced to GP surgeries. “Our study had some limitations so we need to do more work to validate our results, including a longitudinal study on different demographics and a trial of people who are not taking medication,” said Poonam Zham, another of the researchers, in a press release. “But we’re excited by the potential for this simpleto-use and cost-effective technology to transform the way we diagnose Parkinson’s.” Source: nzherald.co.nz | parkinsonsnewstoday.com
Enjoying the Festive Season
Queues in shops, trouble parking, lots of visitors, and limited medical support can all increase stress.
• A nightlight really can be a necessity, and there are many gorgeous options to choose from. • A gift certificate for a massage or for a pedicure and manicure. • Exercise equipment, such as an Exercycle or Nordic walking poles. • A guide or service dog may be worth considering. They can bring peace and safety to people with Parkinson’s.
So we’ve put together a few tips for making the holiday season more enjoyablefor everyone.
MORE ADVICE AND TIPS
We’ve put together a few tips on making the holiday season as easy as possible. The festive season, although a time for enjoyment, can bring extra pressure.
FORWARD PLANNING It’s important to plan ahead to make the festive season an enjoyable time. Here are some handy hints for carers to keep in mind: • Make sure that you and the person you care for have enough medication to last over the holiday period. • Share any extra workload with family and friends. • Get your shopping done in advance to avoid extra stress and huge queues.
DIFFERENT GIFT IDEAS FOR PEOPLE WITH PARKINSON’S 6
Finding the perfect gift can be challenging. If you or someone you know needs a suggestion about what to give to someone with Parkinson’s, here are a few gift ideas: • If someone loves playing cards, but it’s difficult to hold the cards, an automatic card shuffler and a hand-held or a freestanding card holder. • An electric shaver is a great idea for men and women. • An electric toothbrush makes brushing your teeth an easier task. • Thick terry towelling robes for drying off when we just don’t have the strength or balance to use a towel. • Satin pyjamas to make turning over in bed easier • For the person who loves to cook and bake, how about an electric can opener or a stand mixer? Or, lighter baking pans and dishes, an electric wine bottle opener, or knives with rubber gripping on the handle. • If you know a gardener, look for ergonomic gardening tools that might feel better in the palm of the hand. You could give them some seeds, potting mix and pots along with a tool or set of tools. • Everyone loves a good gift card, but they can seem impersonal. You can always make your own. How about a coupon book that entitles the recipient to a once a month treat? Looking forward to an event or outing once a month can be revitalising. Some ideas may include: a movie night or a game night, a picnic, or a walk in the park. • A gift membership for a Tai Chi or dance class, or buy an exercise DVD. • A Kindle or other e-Reader to make it easier to hold books.
• Have realistic expectations of what you have the time and energy to do • Communicate with family and friends about how things may be different this year. • Ask for help. • Get family and friends to give you a break so that you can enjoy the festive season too.
Gift ideas for carers If you or your loved one has a carer, you know just how much they do to make the lives of those living with Parkinson’s easier. It’s time to say thank you with these gift ideas for carers.
PAMPERING Carers spend so much time looking after others that they rarely get time to look after themselves. Whether you want to treat them to a manicure, massage, or a spa day, treating them to some pampering time will help them feel refreshed and rejuvenated. Small gifts of pampering products like bubble bath and luxury lotions are just as good for relaxing at home.
HELP AROUND THE HOME If the carer you know is a family member, they might appreciate gifts that will help them and the person they care for around the home. A gift certificate for a cleaner or someone to mow the lawns could make all the difference.
TIME OFF The very best gift you can give a carer is some time off. Can you step in for a day or organise some extra help? You can buy them a nice meal or tickets to an event, or simply let them decide how to spend their day off. It’s all about giving carers some much-needed time in which to relax.
Restless legs syndrome and Parkinson’s Some people with Parkinson’s experience restless legs syndrome. This factsheet explains what restless legs syndrome is, what the symptoms are, how it is diagnosed and what treatments are available.
WHAT IS RESTLESS LEGS SYNDROME? Restless legs syndrome is a condition that causes an overwhelming urge to move your legs. It is experienced by more women than men in the general population and can be a common problem for people who have Parkinson’s. Symptoms can start at any age, but it is more common as you get older. Most people’s symptoms are not severe or frequent enough to need medical treatment. When it happens can vary from person to person. Some people experience it occasionally, while for others it happens every day. It happens most often when you are resting— for example, when you are sitting watching the TV or lying in bed.
People with Parkinson’s have secondary restless legs syndrome – this means there is an underlying cause for the condition. Secondary restless legs syndrome is also linked to pregnancy, iron deficiency and chronic kidney failure. If you are concerned about any of these, speak to your GP, neurologist or Parkinson’s Community Educator.
WHAT ARE THE SYMPTOMS? Symptoms include tingling, burning, itching or throbbing in your legs. People have described it as feeling like you have bugs crawling under your skin, or that if feels like you have fizzy water in your veins. Others describe the symptoms as a creeping, pulling, tugging or gnawing at the legs. You may need to walk around to get relief. Contact with bedclothes may also feel uncomfortable.
In most cases, the underlying cause for restless legs syndrome is not known. This is called idiopathic (or primary) restless legs syndrome.
The symptoms of restless legs syndrome generally occur, or get worse, in the evening or at night, so the condition can have a major effect on your sleeping pattern. This lack of sleep can cause daytime tiredness and sleepiness. People with restless legs syndrome are also more likely to experience anxiety and depression.
You are more likely to have idiopathic restless legs syndrome if people in your family have had the condition.
Some medications, smoking, caffeine, alcohol, being overweight, and a lack of exercise may make symptoms worse.
WHAT CAUSES RESTLESS LEGS SYNDROME?
FACT SHEET – CONTINUED FROM PREVIOUS PAGE
HOW IS IT DIAGNOSED? If you are experiencing symptoms, you should talk to your Community Educator and make an appointment to see your GP. Your doctor can refer you to a specialist if necessary. Before your appointment, you may find it useful to keep a diary of your symptoms. To assess your symptoms, your doctor may ask you the following: • How often do your symptoms occur? • How uncomfortable are your symptoms? • Do your symptoms cause you distress?
Rarely, a person with Parkinson’s may experience disturbed sleep due to dyskinesia. These are involuntary movements caused by Parkinson’s medication. If you are concerned about this, speak to your GP, neurologist or Parkinson’s Community Educator.
HOW IS RESTLESS LEGS SYNDROME TREATED? Your treatment will depend on how severe your symptoms are and what may be causing them.
• Is your sleep being disrupted? • Do you have a family history of restless legs syndrome? There isn’t a single test to diagnose restless legs syndrome, but there are some basic things your doctor will look for, including: • An overwhelming urge to move your legs, along with feelings of itching or tingling • Symptoms that happen or get worse when you are resting, especially while sitting or lying down • Symptoms that get better when you move or rub your legs • Symptoms that tend to occur or get worse in the evening or at night
Mild symptoms of restless legs syndrome may be treated with lifestyle changes. There are a number of things you can try, such as: • Massaging your legs • Walking and stretching • Applying a hot or cold compress to your legs • Relaxation exercises – yoga or Tai Chi, for example You might also find the following helpful: • Taking a hot bath in the evening • Avoiding alcohol, caffeine and smoking at night • Establishing a regular sleeping pattern • Having a cool, comfortable sleeping environment
Your doctor may also consider: 8
• Whether you find that your symptoms improve when you take your Parkinson’s medication • If you experience periodic limb movements of sleep. This condition causes involuntary arm and leg movements while you are sleeping, but may cause you to wake up briefly. It tends to disrupt the sleep of the sleeping partner more than the person with Parkinson’s. • How the condition develops. Restless legs syndrome is normally ongoing, but sometimes symptoms may only happen from time to time. • Your age when diagnosed. Most people are middle-aged or older, but symptoms can start at any age. • Symptoms such as numbness and tingling, or a burning or shooting pain in your hands or feet. This could be a sign of damage to your nervous system, which could be a sign of another condition such as peripheral neuropathy. • Disturbed sleep, usually insomnia. Insomnia is a sleep disorder that causes problems getting to sleep or staying asleep. • Depending on your medical history, you may be sent for further tests to rule out other underlying conditions. Sleep tests may be recommended if your sleep is very disrupted. These can help diagnose periodic limb movements of sleep.
MEDICATION Moderate to very severe symptoms are normally treated with medication. Levodopa is a chemical building-block that your body converts into dopamine. Levodopa occurs naturally and taking it as a drug treatment boosts the supply. It may be recommended if you only have symptoms now and again. Dopamine agonists are usually prescribed if you are having more frequent symptoms. Dopamine agonists act like dopamine to stimulate your nerve cells. Painkillers like codeine can be prescribed if you are in pain. Your doctor may also recommend anticonvulsant drugs to relieve symptoms. Sleeping pills may be helpful if your symptoms flare up. Usually you will be prescribed a low dose for a short period of time only. In general, prescription sleeping tablets are safe and effective when taken as prescribed. However, speak to your healthcare professional if you have any concerns.
IS IT DIFFICULT TO MAKE A DIAGNOSIS IN PEOPLE WITH PARKINSON’S? Because there isn’t a specific test for restless legs syndrome, it can be difficult to diagnose the condition. Symptoms can be brief or only happen from time to time. Also, the condition can cause discomfort at night time and this can be mistaken for arthritis in people with Parkinson’s.
Sources: parkinsons.org.uk | www.rls-uk.org Last updated: September 2017
Repurposing drugs for Parkinson’s treatments We’ve talked about how drug repurposing (also called repositioning) can accelerate a treatment for Parkinson’s through the development pipeline. A drug that is already approved by Medsafe for one indication may have beneficial effects for those with another condition. Proving that this is effective and safe is called “drug repurposing” (or repositioning). One of the great advantages with repurposing drugs is that if a drug is already available and well characterised, it can progress more quickly through the lengthy drug development, testing and approval process. This can accelerate a treatment for Parkinson’s through the development pipeline compared to investigating a brand new drug. However, the lack of commercial incentive for drug repurposing makes the practice less attractive to industry funders. With this in mind, various foundations are looking at ideas to prioritise the most promising existing drugs and treatments that may be potentially suitable for repurposing in Parkinson’s.
DIABETES DRUG MAY HAVE POTENTIAL FOR PARKINSON’S Researchers are evaluating diabetes drugs and other compounds for their impact on Parkinson’s. It is hoped that findings from clinical trials testing the efficacy and safety of diabetes drugs to treat Parkinson’s will lead to further Parkinson’s research. Taking a diabetes medication for Parkinson’s may seem odd, but repurposing gives researchers an alternative route for Parkinson’s medication development. The interest in diabetes drugs is not new. In recent years Parkinson’s researchers have looked to diabetes drugs because of their action on pathways also believed to be in involved in Parkinson’s. Researchers in the UK have recently shared promising results from a phase 2 clinical trial that suggests a diabetes drug could help those living with Parkinson’s. The results from the trial suggest that exenatide, currently used in the UK to treat type 2 diabetes, improves movement-related issues and might also slow the progression of Parkinson’s. Exenatide is not routinely used to treat type 2 diabetes in New Zealand. The results, published in the scientific journal The Lancet in August, show promise that exenatide and other similar drugs have potential as a new, future treatment for people with Parkinson's. The trial of the drug at University College London involved 60 people with moderate Parkinson’s. Half received exenatide once a week for 48 weeks, while the other half, the placebo group, received a dummy injection. At the end of the study, those who received exenatide had a slight but significant improvement in movement symptoms when measured off their regular Parkinson’s medication.
In comparison, participants who received the placebo worsened slightly on this measure over the course of the study. The benefit persisted even when the drug had not been taken for 12 weeks, suggesting it might be helping to slow the progression of Parkinson’s. However, there was no difference between the two groups on any other measures, including quality of life, non-motor symptoms or movement symptoms, while on their regular Parkinson’s medication. Throughout the study all participants were carefully and comprehensively monitored to assess any changes in their symptoms and to identify any potential safety issues or side effects. The benefits seen in this study offer encouragement that diabetes treatments could provide new treatments for Parkinson’s in the future. However, although exenatide shows promise, more research, with a longer follow-up, is needed to prove the effects of the drug and determine how it might work. It is possible that researchers may find treatments that work in a similar way to exenatide may be more effective. Repurposing existing drugs could allow treatments to be made available more quickly than starting from scratch to develop entirely new medication. No current treatment can slow or stop the progression of Parkinson’s. Repurposing existing drugs warrants further research to deliver the breakthroughs people with Parkinson’s urgently need.
Sources: Parkinsons.org.uk | Parkinsonstoday.com For more information on repurposing drugs, please see the December 2016 issue of The Parkinsonian.
BOARD TRUSTEE NOMINATIONS We are looking for nominations for trustees for the Parkinson’s New Zealand Charitable Trust Board. We are particularly interested in people with experience in clinical environments, business development and organisational change management. For more information please contact email@example.com
Tips for staying well in summer It’s officially summer. As we look forward to all the joys that summer brings—BBQs, holidays, weekend visits, and outdoor activities—it is important to take the warmer weather into consideration.
SWEATING TOO LITTLE
People with Parkinson’s may have problems with how much or how little they sweat. Problems with the part of the nervous system that controls sweating can lead to excessive sweating (known as hyperhidrosis), which most often happens if your Parkinson’s drugs wear off. Sometimes, people with Parkinson’s can also experience sweating at night.
Some people with Parkinson’s may not sweat enough, which is caused by a condition known as hypohidrosis. This may be a side-effect of anticholinergics, a type of medication used to treat Parkinson’s. Lack of sweating may affect parts, or all of the body.
Sweating excessively can also happen in the “on” state (when your Parkinson’s drugs are working at their best) especially if you have dyskinesia (uncontrollable muscle movements or spasms). Some people living with Parkinson’s may be taking medications to help reduce depression and anxiety. Some of these medications can also cause an increase in sweating, especially at night. Check with your GP if this might apply to you. Because some people with Parkinson’s may have a reduced sense of smell, they may not be aware of body odours caused by excessive sweating. 10
Sweating is normal and helps your body regulate its temperature. If you sweat very little or not at all, particularly when it is hot or you feel hot, speak to your doctor, neurologist or Community Educator. This is because a lack of sweating, or reduced ability to sweat, may put you at risk of over-heating.
TIPS FOR KEEPING ACTIVE Hot weather can be draining, making it difficult to stay active during the summer months. But with the many benefits of exercise for people with Parkinson’s, it’s important to stay active even if you’d rather just spend time on holiday, relaxing at the beach or on the couch.
Excessive sweating can be distressing, but there are things you can do to keep it under control.
Family and carers can help motivate loved ones by joining them for an indoor dance class, early morning walk or swim in an indoor pool. If you and your loved one love to do exercise outdoors, pay close attention to energy levels, bring plenty of water and be sure to apply and re-apply sunblock.
• Try to identify any food or drinks that may trigger sweating
Here are some ideas on ways to stay active in summer.
HOW TO MANAGE SWEATING
• Use an antiperspirant frequently to reduce sweating • Don’t wear clothes that are tight-fitting or made of synthetic materials • Wear cotton socks or sports socks that are designed to absorb moisture. Change your socks twice a day if possible. • Wear leather shoes and change them or take them off often. • Try to avoid situations that may trigger sweating, such as crowded rooms. If these don’t work, or you feel your symptoms are having a major impact on your life, speak to your doctor or Community Educator.
1. Take an indoor walk. The mall or local museums are both airconditioned destinations for a warm-weather stroll. 2. Move your workout to later in the evening or first thing in the morning. An outdoor Tai Chi class can be an invigorating way to get moving first thing in the morning before it gets too hot outside. 3. Try a dance or yoga class with your partner or a friend. Ask your Community Educator about classes specifically for people with Parkinson’s. 4. Go to the gym or an indoor pool. Enjoying a game of indoor ten-pin bowling can keep you moving too. 5. Use an indoor exercise machine. Indoor gyms or at home exercise machines can keep you out of the hot sun, while providing the chance to get active.
Sources: Parkinsons.org.uk | Michaeljfox.org 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 firstname.lastname@example.org.
UPBEAT Weekend The 2017 UPBEAT weekend was held 15-17 September at the Airport Conference Centre in Hamilton. Over 80 people with early onset Parkinson's and their partners attended. The North Island was well represented and members as far away as Invercargill also attended. Friday afternoon started with Speech Language Therapist Robin Matthews and a sing-along. This was a fun way to learn about Parkinson’s and communication and a great icebreaker. The members who attended the 2017 Outward Bound course had everyone laughing with their "rap" performance. Senior Neurological Physiotherapist Gilly Davy outlined the principles of exercise for people living with Parkinson's and then got us on our feet and moving. Before dinner, we enjoyed trying a walking bike called the Alinker (pictured below). The Saturday morning session began with a group Tai Chi session led by Waikato Tai Chi instructor Doug Downs. Nurse Practitioner Tony Lawson from Bay of Plenty DHB spoke about Parkinson's and medication. STADA Nurse Advisors Rebecca Manners and Elise Tune described medication treatment using Movapo (apomorphine). Movement Disorder Nurse Lorraine MacDonald from Auckland Hospital spoke about Deep Brain Stimulation (DBS), the assessment process and what the surgery involves. These presentations were followed by a panel discussion with plenty of question and answer time. Saturday afternoon's excursion to the Hamilton Gardens for lunch and a wander through the gardens was a good way to get to know people better. Group discussions on topics relevant to people with early onset Parkinson’s and their partners were well attended. On Saturday night there was dinner and dancing with Wellington Dance For Parkinson's instructor Rachel Horwell. A number of us danced the night away! The Sunday morning session began with a group dance session led by Rachel Horwell. Dr Helen Murray from the Centre for Brain Research talked about the latest research on the progression of Parkinson’s in the brain and discussed her own research on neuroplasticity and the Parkinson's brain. The weekend ended with a presentation by psychiatrist Dr Colin Patrick from Waikato DHB who spoke about non-motor symptoms related to Parkinson’s including depression, anxiety, psychosis, and problems with sleep. Arrangements were tailored to suit the needs of people with Parkinson’s. Breaks between sessions allowed members to eat, drink, chat or rest. A special thanks to the Parkinson's Waikato branch for hosting this weekend. Visit our website www.parkinsons.org.nz under UPBEAT to view presentation reports from the weekend. We are also grateful to our funders The Southern Trust and STADA Australia for their generous support.
MOVAPO® WHAT IS MOVAPO® AND HOW DOES IT WORK? MOVAPO®
contains apomorphine which belongs to a group of medicines called dopaminergic compounds. Apomorphine is used in the treatment of Parkinson’s disease to reduce the number and severity of bouts of freezing and stiffness (or “off” periods). This medicine works by acting on dopamine receptors. These receptors help control movement by the body. 1 Although morphine is in its name, it is not at all related to the pain reliever.2
HOW IS MOVAPO® GIVEN You will usually be in hospital when you start using MOVAPO®. It is recommended that you are given an anti-nausea drug (domperidone) and that you stop all your other anti-Parkinsonian medication before you start using MOVAPO®. It is given as an injection under the skin (subcutaneously), usually into your lower abdomen or outer thigh. It is either injected several times a day or continuously as an infusion (ie, slow injection via a pump).1
WHY IS MOVAPO® GIVEN BY INJECTIONS OR INFUSION? Like everything we eat, tablets need to be processed by the digestive system – once processed, the tablets can start to have effects on Parkinson’s symptoms. Unfortunately, the digestive system can also be affected by your Parkinson’s Disease. This means that tablets can sometimes take a long time to get absorbed, and therefore it takes longer for you to feel the effect of the tablet.3,4
MOVAPO® is given by infusion, which means it can bypass the digestive system and move rapidly via the bloodstream to the brain.
MOVAPO® is available in 2mL ampoules. The content of the ampoules is drawn into a small syringe to inject yourself. It is a similar syringe and needle as those used by people with diabetes to inject insulin.
MOVAPO® INFUSION is small, lightweight and discreet – it is no bigger than the average mobile phone. It can be easily hidden under clothing by attaching it to the waistband of your trousers or skirt.
WHAT HAPPENS NEXT? Once prescribed, you will be trained how to administer apomorphine in your home by an experienced PD Nurse or a STADA Nurse Advisor. STADA Nurse Advisors provide support to healthcare professionals and patients who are being treated with MOVAPO® therapy. They are experienced registered nurses and are available to visit patients directly in their homes or can provide support in clinics and over the phone. The STADA Nurse Advisor is there to help improve management and to support the patient with Parkinsons disease and their family when MOVAPO® therapy has been prescribed.
IS THE TREATMENT REVERSIBLE? Using MOVAPO® is not permanent and is completely reversible should you need to discontinue use for any reason. You simply remove the infusion line and the medication will be out of your system within a few hours.5 No invasive surgery is required to insert or remove the device. It is also a convenient option for those who like to swim or immerse themselves in water as the device can be removed for swimming.
For further information about MOVAPO® please contact your GP or Neurologist.
REFERENCES 1. MOVAPO Injection and MOVAPO PFS Consumer Medicines Information 2. https://www.parkinsons.org.uk/sites/default/files/publications/download/ english/b003_advancedparkinsons.pdf 3. Heetun ZS, Quigley EM. Parkinsonism Relat Disord 2012; 18: 433-440. 4. Marrinan S, et al. Mov Disord 2014; 29 (1): 23-32. 5. Movapo PFS Product Information, 2 November 2015.