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SEPTEMBER 2017

VOL. 20 – NO.3

ISSN 1177-0635

Veteran with Parkinson’s exposed to solvent

HMNZS TARANAKI AT PEARL HARBOR C. 1963

In the 1970s Parkinson’s New Zealand member George* served on a Royal New Zealand Navy ship. Decades later, he is living with Parkinson’s, one of a number of conditions linked with exposure to a toxic solvent that was used within the Navy, both on ships and on shore. LANDMARK CASE In a landmark decision, Veterans’ Affairs New Zealand has provided George with an entitlement to disability compensation for Parkinson’s, a condition that is attributed to his operational service on a Royal New Zealand Navy ship during the Malayan Emergency. The Royal New Zealand Navy used a number of chemical solvents on ships beginning in at least the 1950s. Among the chemical solvents was trichloroethylene (TCE), which is thought to be among the most damaging to human health, with links to a number of adverse health effects including Parkinson’s. Despite receiving his Parkinson’s diagnosis several years ago, George’s entitlements were not paid until June 2017. The family learned that Veterans Affairs’ decision rested largely on the science supporting a connection between exposure to TCE and Parkinson’s. The family voiced some frustration about the delays they experienced receiving their entitlements, but they are largely satisfied with the result. During the appeal process, George said that he received significant support from the Royal New Zealand Returned and Services’ Association (RSA), which has been a vocal advocate for veterans sickened by environmental exposures, including those from radiation exposure and Agent Orange. Over the years the RSA and Parkinson’s New Zealand have worked in partnership to support service personnel including George. The RSA recently expressed concerns to The Parkinsonian about the interpretation of sections within the Act regarding evidential standards and onus of proof, which is requiring an inordinate amount

of research to be supplied by current and former military personnel who may have been sickened by environmental exposures. “These can be extremely complex issues, and beyond the capability of many of our people to deal with on their own, particularly when they are also grappling with a severe illnesses or impairment. There is also likely to be many more serving or ex-serving NZDF people in George’s situation, related to different types of exposures, who are unaware of any possible link,” said National RSA Support Services Manager, Mark Compain. “We are in the process of commissioning research on environmental exposure risk in conflict zones to improve our knowledge, support and advocacy in this area. We are also working closely with Veterans’ Affairs New Zealand and the New Zealand Defence Force to raise awareness of this issue and to lobby for changes that will seamlessly link Defence and Public Health records so we can effectively monitor our Veterans’ health and educate the health workforce on military health matters.”

EXPOSURE TO CHEMICAL SOLVENT MAY INCREASE RISK OF PARKINSON’S Among the evidence that was considered by Veterans’ Affairs in George’s case was a 2011 study on exposure to TCE that was published in the Annals of Neurology journal. In the study entitled “Solvent exposures and Parkinson Disease risk in twins” researchers from institutes in the US, Canada, Germany and Argentina wanted to examine the impact of solvent exposure – specifically six solvents including TCE.

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The research team studied 99 pairs of white male twins, about half of which were identical, born between 1917 and 1927.

In 1997, the US authorities banned its use as an anaesthetic, skin disinfectant, grain fumigant and coffee decaffeinating agent.

One twin of each pair had been diagnosed with Parkinson’s.

TCE is still used as a degreasing agent for metal parts in the US and in New Zealand. In Europe, TCE was reclassified in 2001 as a “category 2” carcinogen, but it is still used in industrial applications.

Because twins are genetically very similar or identical and often share certain lifestyle characteristics, twins were thought to provide a better control group, reducing the likelihood of spurious results. Researchers took detailed occupational histories from all the participants to assess their exposure to a variety of different chemicals. They were also asked about hobbies. People were considered to have exposure to a chemical if their job exposed them to it for one hour per week. The findings were presented as the first study to report a “significant association” between TCE exposure and Parkinson’s and suggest exposure to the solvent was likely to result in a sixfold increase in the chances of developing Parkinson’s. The researchers also found that exposure to tetrachloroethylene (PERC) and carbon tetrachloride (CCI4) increased risk of Parkinson’s. No statistical link was found with the other three solvents examined in the study – toluene, xylene and n-hexane. The study confirmed that common environmental contaminants may increase the risk of developing Parkinson’s, which has considerable public health implications.

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The findings suggested a lag time of up to 40 years between TCE exposure and the onset of Parkinson’s. The researchers suggested this could provide a critical window of opportunity to potentially slow Parkinson’s before clinical symptoms appear.

TOXIC WATER CLAIMS Another factor that was considered in George’s landmark case was the surge of recent disability compensation payments to veterans exposed to toxic water at Camp Lejeune, North Carolina (United States). After decades of lawsuits and appeals since the toxic water at Camp Lejeune was first confirmed, in March 2017, the US Department of Veterans Affairs (VA) began accepting claims from veterans with disabilities stemming from eight presumptive conditions including Parkinson’s who were assigned to Camp Lejeune. From 1953-1987, drinking water wells at Camp Lejeune were contaminated with TCE, benzene, vinyl chloride and other petroleum contaminants from leaking storage tanks and an off base dry cleaner, according to US government environmental health experts. The water at Camp Lejeune was a hidden hazard, and it was not known for years just how dangerous it was.

WHAT IS TCE? TCE is an industrial solvent. It is most commonly used as a degreaser for metal parts. It has also been used in paints, glue, carpet cleaners, to clean computer circuitry, in dry-cleaning and textile industries, and even as a surgical anaesthetic. But due to concerns about its toxicity, the use of TCE in the food and pharmaceutical industries has been banned in much of the world since the 1970s and is also being phased out of industrial use.

In a Workplace Exposure Standard (WES) Review on TCE published in April 2017, WorkSafe New Zealand noted there is still use of TCE in New Zealand workplaces, particularly for degreasing. The WES review authors commented that “it is not feasible to estimate the number of workers potentially exposed to this substance.” Groundwater contamination by TCE is widespread in the US, with studies estimating up to 30% of US drinking water supplies are contaminated with TCE. From the 1950s to the mid-1980s solvents like TCE were found in most households in New Zealand within products such as stain remover, dry cleaning fluids, degreaser and paint stripper. Following disposal to farm tips, sewers and managed or ad hoc landfills, a significant volume of the solvents will have evaporated. However, the remainder may have found their way into the groundwater system. Industrial uses continue in New Zealand with commercial and industrial sites using solvents like TCE and creating further potential sources of groundwater contamination.

IS IT TOO SOON TO KNOW THE EFFECTS OF SOLVENTS? As things like TCE are recognised as harmful, there is more regulation. Industrial solvents like TCE are commonly used in a variety of occupations. They are also frequent environmental contaminants including drinking water. The 2011 study was the first study to show that the solvent TCE may be associated with an increased risk of developing Parkinson’s. It is important to highlight that many of the previous uses of this solvent have been discontinued for safety reasons and that safety and protection in work places where strong chemicals such as this solvent are used has greatly improved in recent years. Low levels of this solvent and other solvents are found in the environment from industrial and other emissions but the 2011 study only examined heavy exposure at work to the solvent. Some experts have argued that larger scale studies on populations with more defined exposures are needed to confirm the link. But according to other scientists, the scientific consensus of recent years suggests that while TCE exposure alone might not be enough to cause Parkinson’s, it likely works in concert with other risk factors such as genetics and age—each of which are also unlikely to be the sole trigger. Any one factor, including the chemical exposure, could prove to be the final straw. It is not likely that people living in New Zealand are going to be exposed to a high dose of TCE. If you have been exposed to TCE, please talk to your doctor or your Parkinson’s Community Educator. For details on RSA Support contact their National Office on 04 384 7994 or email enquiries@rsa.org.nz or speak to your RSA District Support Advisor at rsa.org.nz/support/support-services/team *George’s name has been changed to protect his confidentiality.

Sources: Epa.govt.nz | Worksafe.govt.nz | Parkinsons.org.uk BBC.com | Military.com

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A WORD FROM THE CHIEF EXECUTIVE

Tena Koutou Katoa Our Parkinson’s Community Educator Conference held in Auckland was a great chance for our Community Educators to increase their knowledge and share with Community Educators from across New Zealand. They enjoyed discussions by an inspiring line up of speakers, and they’ve brought back lots of information to share with our branches and divisions. It was an incredible privilege to visit our friends at the Neurological Foundation Douglas Human Brain Bank at the University of Auckland's Centre for Brain Research. Deputy Director Dr Maurice Curtis who works every day with a team of research scientists to unravel the mysteries of the Parkinson's brain discussed their latest research findings with our Community Educators. We were given a sneak preview of some very interesting new results which we look forward to sharing with you soon. Technical Manager Marika Eszes and Dr Curtis generously gave up a morning to show us around. As we go to print with this edition of The Parkinsonian we are putting the finishing touches on the details for our National UPBEAT Weekend for people with early onset Parkinson’s in Hamilton. Our UPBEAT weekends feature excellent presentations on a wide range of topics and offer opportunities to spend time with other UPBEAT members. I would like to extend a special thanks to our friends at STADA along with our other sponsors for helping to support our Community Educator Conference and the UPBEAT weekend. In this issue of The Parkinsonian we share a news story on pages 1 and 2 about a landmark case involving one of our members who was exposed to a chemical solvent while he was working on a Royal New Zealand Navy ship. We hope this article will increase awareness about support services that are available for others who may be in a similar situation. I would also like to recognise the contributions of our

partners and friends at the RSA who have worked with Parkinson’s New Zealand over the years to provide support to service personnel living with Parkinson’s and their families. I also hope you will enjoy the useful article on page 6 about how you can improve the design of your garden this spring. Gardening is a fantastic activity and it’s satisfying to continue to do what we can to make our gardens spaces that we will enjoy in the months and years ahead. If you are affected by curling toes or other foot problems, there are some good tips to help you manage these symptoms in our new factsheet on Parkinson’s and Foot Care on pages 7 and 8. Our 200 Years Is Too Long theme for Parkinson’s Awareness Week (1-7 November) encourages everyone to get involved to help us provide more information and support. Raising awareness is an important part of what we do. Whether you explore the resources on our website, volunteer for your local branch or division or share your Parkinson’s story with the hashtag #ParkinsonsNZ, you will help us raise the awareness message about Parkinson’s all around New Zealand. Please share news about Parkinson’s Awareness Week with all your friends, family, colleagues and networks. With best wishes to you all. Nga mihi nui 3

Deirdre O’Sullivan

COMMUNITY EDUCATORS WITH DR MAURICE CURTIS (LEFT)

SEPTEMBER 2017


NEWS & RESEARCH CALL TO ENSURE SUPPORT FOR RISING NUMBER OF PEOPLE WITH PARKINSON’S

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The number of New Zealanders with Parkinson’s is expected to double in the next 25 years. The study by the Christchurch-based Brain Research Institute used the National Register of Prescriptions to identify people with Parkinson’s. The figures from this study show there are currently 9,600 people with Parkinson’s in New Zealand. However, studies that rely on the analysis of prescription records can be confounded by numerous other factors, including an underestimation in the numbers of younger and less seriously affected people living with Parkinson’s. The author of the study, Dr Toni Pitcher, said using that figure and population predictions, they were able to forecast that by the year 2035 there would be 17,500 people with Parkinson’s. The researchers expect a slower increase up to 24,000 people by 2068. Dr Pitcher said the study found the idea that as age increased so did the risk of Parkinson’s may not be true. According to the researchers, after the age of 85, the chances of someone getting Parkinson’s seems to decrease. This information is important so we can ensure there are enough strategies in place for the increase of people with Parkinson’s. We look forward to further research to determine whether these figures are an accurate representation of the numbers of people with Parkinson’s in New Zealand. Source: radionz.co.nz

PARKINSON’S PROTEIN GETS STARRING RESEARCH ROLE ON INTERNATIONAL SPACE STATION When a resupply mission lifted off in August bound for the International Space Station, it was carrying an important cargo for researchers studying Parkinson’s: a protein considered to be a key to potential future therapies. The LRRK2 protein will be the focus of an experiment conducted on the Space Station. It is hoped that the micro gravity conditions aboard the Space Station will allow growth of larger, more regular LRRk2 protein crystals, which would help scientists solve the protein’s structure — providing valuable information for the design of optimised therapies to fight Parkinson’s.

The experiment is the result of a partnership between the Michael J Fox Foundation for Parkinson’s Research and the Centre for the Advancement of Science in Space (CASIS). The SpaceX CRS-12 cargo resupply mission had a lift-off in August carrying LRRK2 protein to the Space Station to be used in the Crystallization of LRRK2 Under Microgravity Conditions (CASIS PCG 7) experiment. In its role as manager of the Space Station’s U.S. National Laboratory, CASIS is responsible for coordinating transfer of scientific materials to and from the Space Station and oversight of work conducted in the laboratory. LRRK2 is considered to be the greatest known contributor to Parkinson’s. Most Parkinson’s cases are categorised as “idiopathic” — of unknown cause — with only about 10 percent of cases having been linked to a genetic cause. LRRK2 gene mutations are the most common cause of Parkinson’s in that minority, which represents only 1 to 2 percent of total Parkinson’s cases. However, LRRK2 mutations account for a much higher proportion of people with Parkinson’s among people of certain ethnic groups, notably Ashkenazi Jews, North African Arab Berbers, and Basques, than they do in the general population. Because LRRK2 protein function is heightened in people with Parkinson’s, and is associated with a mutation in the LRRK2 gene, researchers believe therapies targeting this gene could accelerate development of treatments that can benefit a broader Parkinson’s population. However, one obstacle holding back this line of drug development is the limited understanding of LRRK2’s exact structure. Greater understanding of the protein’s shape and structure can help developers design therapies more likely to engage a particular protein in treatment of disease. Earth’s gravitational field allows only low resolution versions of LRRK2 protein to be grown. However, the CASIS PCG 7 experiment will use automated biotechnology devices operating in the microgravity environment to grow larger, better-formed protein crystals with fewer defects that may yield higher resolution views of LRRK2. These will then be returned to Earth for post-flight analysis. Having a better detailed view of the precise shape and morphology of LRRK2’s crystalline structure would help scientists better understand Parkinson’s pathology, and accelerate development of LRRK2 inhibitor therapies designed to prevent, slow or stop Parkinson’s progression. Source: parkinsonsnewstoday.com | michaeljfox.org

PEOPLE WITH PARKINSON’S HAVE A HIGHER RISK OF DEVELOPING MELANOMA People with Parkinson’s have a significantly higher risk of developing melanoma, and the opposite could also be true, according to a new study. But researchers aren’t sure of the cause. The study, “Parkinson’s Disease and Melanoma: Confirming and Re-examining an Association”, was published in the journal Mayo Clinic Proceedings. Research dating back to 1972 has examined the correlation between the development of Parkinson’s and the incidence of melanoma. Many researchers have attributed the higher rates

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of melanoma in people with Parkinson’s to the drug levodopa, which is commonly prescribed in Parkinson’s. Other researchers have suggested a link between Parkinson’s and melanoma without the use of levodopa. Overall, scientists have not been able to come to a consensus on whether the association is real, and if so, whether it is caused by levodopa. Researchers at the Mayo Clinic in Rochester, Minnesota (United States) made use of the Rochester Epidemiology Project (REP) medical records of patients from Olmsted County, Minnesota, as a way to obtain a larger cohort of patients. They used data from the REP to review the charts of all available patients with Parkinson’s and compared the incidence of melanoma to ageand gender-matched controls. They also examined data on patients who had been diagnosed with conjunctival or uveal melanoma—two forms of eye cancer— and determined how many of them developed Parkinson’s. Results from this study show that patients with Parkinson’s are roughly 4-times more likely to have pre-existing melanoma compared to the control group. They also determined that patients with melanoma may have fourfold higher risk of developing Parkinson’s. Results from this study suggest a link between Parkinson’s and melanoma, but do not support levodopa as the cause. Given the nature of the two cohorts and age associated expressions of the two conditions, there is a need for more in depth review of their results and comparisons with other studies. The researchers note that despite the need for additional research on this topic, doctors treating either condition should stay aware of the other condition and monitor signs of development. New Zealand has one of the world’s highest incidence rates of melanoma. By far and away, the most common risk factor for melanoma is exposure to the sun — all of us should be cautious about our skin and aware of the dangers. Check your entire body regularly. Ask for help from someone else to check difficult-to-see areas such as your back, neck and scalp. If you notice a mole or skin lesion that looks out of place or feels different from the others, see your doctor. Source: parkinsonsnewstoday.com | michaeljfox.org melanoma.co.nz

Research into the benefits of physiotherapy Physiotherapy features in the NICE recommendations for research. It proposes an investigation into whether physiotherapy, started early in the course of Parkinson’s—rather than after the onset of motor symptoms—is beneficial. NICE says more research is needed to support the use of physiotherapy at an early stage to stop motor symptoms becoming severe. This is because most trials have involved people who have already developed motor symptoms. Source: nice.org.uk | parkinsons.org.uk

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 getgoing@parkinsons.org.nz. We have an information pack on how to get started, fundraising ideas, instructions for setting up a givealittle page and more. 5

“I’ve stopped falling!” Finally! Walking aids for Parkinson’s Now Available - the new & improved U Step 2 Gutter frame option available Stability - The U-Step 2’s ultra stable foundation braces you in every direction, its U-shaped base surrounds you and moves with you. Safety - The U-Step 2 will not roll unless you are ready to walk. When you lightly squeeze a hand brake the unit will roll with you. Once you release the hand brake the unit will stop. Laser - The U Step 2’s unique laser offers an entirely safe, obstacle-free visual cue that helps you break the freezing episode and walk normally. Metronome - The U Step 2 has a metronome to help with uneven gait or those who require an audio cue to help take regular steps. Gutter Arms - The U Step 2 is now available with gutter arms

NICE RECOMMENDS SPECIALIST PHYSIO FOR EARLY-STAGE PARKINSON’S Health professionals should consider referring adults in the early stages of Parkinson’s to physiotherapists for an assessment, education and advice. This is according to an updated guideline from the National Institute for Health and Care Excellence (NICE) in the U.K. Published in July, the document updates a 2006 version and is further evidence that referrals should be made to physiotherapists with experience in Parkinson’s. More generally, the guideline recommends that people are offered Parkinson’s-specific physiotherapy if they experience balance or motor function problems.

Also available, the Lasercane - a cane that projects a laser line on the floor for you to step over to help overcome freezing. Ideal for those who do not need a walker as yet but require the obstacle-free visual cue to get you moving freely again Order your U-Step now! Call 0800 882 884 Web www.ustep.co.nz Email info@ustep.co.nz Mobility Manawatu, 222 Ruahine St, Palmerston North

SEPTEMBER 2017


CARERS CORNER

Creating Friendly Outdoor Areas Plan your outdoor areas so they are easy to access and provide maximum enjoyment. There’s something about gardens. They lend themselves to tranquillity and a positive frame of mind. They are therapeutic to spend time in and to work in. So they are especially good for many people with Parkinson’s. Yet, maintaining your garden often involves a few new challenges when you’ve got Parkinson’s First of all, you might need to adjust your expectations. Maybe it’s better to have a garden and outdoor area without all of the bells and whistles that is more manageable than trying to do too much. Before you do anything else, making time to review your garden with new eyes can make a real difference, perhaps with a family member or friend who can help you make decisions (and move things around for you). If your garden is big, can you remove some plants or flower beds? Or is allowing part of it to grow wild an option? 6

If your mobility isn’t what it used to be, or other symptoms complicate things, keep it simple. It’s worth scanning your outdoor spaces and thinking about how they can be improved to suit your needs. Decluttering any cluttered areas and putting pots on raised benches, for example, will make these areas safer and more accessible. You’ll be able to maintain your pots more easily. Alternatively you may want to replace most of them with hanging baskets to free up space for you to move about in.

GETTING IN THERE To enjoy your garden, you want to ensure getting in there and moving around isn’t too hazardous. Go for only gentle slopes. Equally, ensure that surfaces are firm for safety (concrete, paving, timber). Pebbles aren’t the best on traversed areas because they roll under your feet. Hoggin or crushed limestone may be more suitable. Make sure paths are wide enough to fit a walker, scooter, or wheelchair. As for flower beds, raising them can minimise having to bend or stoop, and mean they’re more accessible from a wheelchair. They also make digging and planting easier. Just make sure they aren’t too wide so that there is reasonable access from both sides, to reach plants. The right tool for the right job is also vital. Tools should be lightweight and have easy grip rubber handles. You can buy them or improve the comfort of existing gardening tools by covering the handles with foam tubing for a better grip. Long-handled tools are available to help you to reach plants for weeding and harvesting. Make sure your tools are sharp to reduce the energy you need to exert to achieve anything in your

garden and always wear gloves to protect your hands. You can also buy tools which have different length handles which are easy to change round so can be used by more than one person, and in different situations.

KEEPING IT SAFE Consider installing handrails next to steps and paths. If possible, get rid of steps to make walking around your garden safer and easier. Or, try placing garden features or sculptures adjacent to pathways. They can help steady someone navigating a path. Remember to include plenty of seated areas in your garden. Is it possible to incorporate seating among your raised planter boxes? Try arranging seats near fragrant plants like star jasmine, gardenia and Australian dwarf frangipani. Seating is also a good idea near veggie gardens particularly, where so much time is spent working! Clear areas around seating are important for wheelchair, walker, and cane users, who need plenty of space for turning. Especially during the warmer months, it’s helpful to think of ways to create shade in the garden, so you can screen out the sun when it’s hot.

HANGING BASKETS Retractable hanging baskets are a great way to add interest from an overhead pergola or to frame a front entrance. As long as they are not in a main access area, hang them at head height so the plants can be easily viewed and looked after. Hanging baskets do need to be watered more often than other containers. This is because they have air movement all around them, so more water is required to replace what is lost through evaporation. Look for specific hanging basket or container potting mix that includes slow release fertilisers. Cascading plants can look wonderful. Often choosing one flowering plant in a single colour can give great impact, especially if you have a row of baskets along a pergola or veranda. There is a myriad of ways you can make gardening more do-able and sustainable as a future option when you have Parkinson’s. For more information about how to improve the design of your home to make it more accessible and pleasant for everyone at all stages of life, see the March 2017 edition of The Parkinsonian.

THE PARKINSONIAN


FACT SHEET

Parkinson’s and foot care Some people with Parkinson’s may find they have problems with their feet. This may be a result of the difficulties they have with their gait and walking, posture or cramps. They may also have difficulty bending over to take care of their feet.

WHAT FOOT PROBLEMS CAN PEOPLE WITH PARKINSON’S EXPERIENCE? There are a number of general foot problems, such as corns, bunions and verrucae, that can affect everyone, regardless of whether they have Parkinson’s or not. But there are other difficulties people may experience because of their Parkinson’s symptoms.

PROBLEMS WITH WALKING Many people with Parkinson’s experience loss of balance, poor posture and gait (manner of walking) problems. Some people find their stride gets shorter and the amount of time their feet remain in contact with the ground increases. People with Parkinson’s can also lose the typical heel-to-toe pattern of walking — striking the ground with the heel and then pushing off with the toes — because of the stiffness in their ankles. This can lead to a more shuffling, flat-footed action. A flat-footed gait can cause foot, leg and even knee pain, as well as reducing the foot’s ability to absorb the shock of striking the ground. In the long term, this type of flat-footed stance may affect your mobility. Some people with Parkinson’s feel as if they are walking on their toes. Stiffness can affect the ankle joint and, in particular, its ability to bend the foot up. Due to this stiffness, the foot holds a downward-pointing position and the person feels as if they are ‘toe-walking’. Stiffness and/or muscle contraction, particularly in the calf muscles, make it harder for people to flex their ankles, affecting the body’s ability to absorb the shock of contacting the ground. This, in turn, may lead to pressure problems, such as too much hard skin on the soles of the feet.

A podiatrist, a healthcare professional specialising in the care of feet, along with a physiotherapist can suggest exercises to help with this. Alternatively, a custom-made insole can spread the force of contact with the ground over the sole of the foot.

DYSTONIA AND TOE-CURLING People with Parkinson’s may experience muscle cramps and dystonia in their feet. This is where one of your muscles or a group of muscles tighten or shorten (contract) involuntarily. Sometimes this may cause the toes to curl in, in a claw-like way. Occasionally, the ankle may also turn inwards (this is known as inversion) and put pressure on the outside of the foot. There may also be ‘hyperextension’ of the big toe, which causes it to stick up and rub on the shoe. This can lead to pressure problems on areas of the foot that are not meant to deal with such pressure. In some cases, dystonia can be connected to your Parkinson’s medication — speak to your specialist or Parkinson’s Community Educator to see if changing your dosage helps. A podiatrist can also advise you on suitable treatments for toe-curling. Dystonia can also affect the Achilles tendon at the back of the heel, causing it to tighten up and pull the foot in a downward position. This is another possible cause of “toe-walking”. To find out more, see our factsheet on Muscle Cramp and Dystonia

SWELLING Swelling can be a problem for people with Parkinson’s. It may be more common in people with slowness of movement. Blood circulation relies on the legs moving and the leg muscles contracting to propel the blood in the veins upwards to the

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FACT SHEET – CONTINUED FROM PREVIOUS PAGE

heart. If you don’t move very much, the veins become congested, resulting in some fluid leaking out and gathering in the tissues of your feet and ankles. This is known as oedema. A physiotherapist can help you if you experience movement problems. Swelling usually builds up during the day and goes down overnight. Sometimes this is called ‘postural oedema’ because gravity causes the build-up of fluid around the ankles when you stand up. While the swelling is usually mild, some people describe their legs as feeling heavy and they can have difficulty in putting on tight shoes. Wearing footwear that can be loosened during the day may help. Ankle swelling may be a side effect of some Parkinson’s medications. You should discuss this with your neurologist. Swelling may lessen if your Parkinson’s is under control and you are able to move around. If you are not able to move around too much, lying flat with your legs slightly raised three to four times a day can help some of the excess fluid to clear. Sometimes a diuretic drug can be taken. Diuretics help to remove excess fluid from the body by increasing the amount of fluid lost as urine. Your GP, Parkinson’s Community Educator or podiatrist should be able to advise you.

EXERCISE Your podiatrist can train you to stretch and exercise your muscles to reduce the effects of stiffness or rigidity on your feet. They can also show you and your carer (if you have one) simple massage techniques to improve movement and circulation.

TOE SPLINTS A removable silicone ‘splint’ can help to stop toe-curling from getting worse and give the toes something to grip. If you still have some flexibility in your toes, they can be supported in a straightened position with a simple and effective device made from quick-setting silicone rubber. This is moulded around the toes and allowed to set, ensuring it fits properly. If you experience toe-curling, a podiatrist can give you advice on the best treatment for you.

GENERAL FOOT CARE TIPS

WHICH PROFESSIONALS CAN HELP?

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If you have been prescribed an insert, make sure you take it with you when you buy shoes. And try to shop for shoes when your feet are at their worst. Remember, if a shoe needs ‘breaking in’, it does not fit.

If you have problems with your feet, you can visit a podiatrist for advice. Podiatrists look at all areas of foot care including the analysis of how the foot should work during ‘normal’ walking and the problems cause by not walking in a ‘typical’ pattern. Podiatrists work in a variety of places including clinics, hospitals, rest homes, shoe shops and marae. Podiatrists often work with a physiotherapist to help with foot-related mobility problems and to help prevent falls. A podiatrist can also develop and produce tailor-made insoles to help reduce foot and leg pain and improve gait. These include, for example, inserts or arch supports that can be place in your shoes (or into specially made pairs), and ankle and foot insoles, which can be particularly helpful if you have balance problems.

WHAT CAN I DO TO HELP MYSELF? FOOTWEAR Make sure your shoes fit well, as ill-fitting shoes can damage your feet. If you wear shoes that are too narrow, your toes get cramped together and may overlap. Try to choose shoes that have a low, broad heel and fasten over the top of the foot close to the ankle. Shoes with laces, Velcro or a strap and buckle are better than slip-on shoes—your toes have to grip too much in slip-ons. Try to wear slippers as little as possible. Although they may feel comfortable, they give your feet little or no support. You also need to make sure that you have enough room to wiggle your toes. Look for lightweight shoes, especially if you have problems starting movement. For example, you could try trainers made from natural or breathable fibres.

• Wash your feet daily in warm, but not hot, water with a gentle soap that does not irritate the skin. Do not soak them for any longer than an average bath time. Dry your feet carefully, especially between the toes. Do not try to get a towel between the toes if they are curled or rigid. • If your skin is dry, use moisturising cream all over the foot except between the toes. • Remove hard skin by rubbing gently with a pumice stone. Apply moisturiser little and often—twice a day if possible. If hard skin is painful, consult a podiatrist. • Do not cut corns, calluses or ingrown nails yourself or treat them with ‘corn cures’ or ‘corn plasters’. • File your toenails weekly, if possible, using a file with a rounded end or an emery board. Don’t file the nail too short, and don’t file them down at the corners as this can lead to ingrowing nails. Do not use sharp instruments such as nail instruments or clippers, especially if you experience tremor or involuntary movements. If you find it hard to manage your toenails yourself or your carer is unable to help, speak to your podiatrist. • Keep feet warm and exercise when possible to improve circulation. • Don’t wear the same shoes all the time. Alternate daily if possible, as this will spread the pressures on your feet.

Sources: Podiatrists Board of New Zealand, Parkinson’s UK Last updated: September 2017

THE PARKINSONIAN


PARKINSON’S AWARENESS WEEK 2017

PEARL, KATE,ANDY AND LILY

200 Years of Parkinson’s Is Too Long Parkinson’s Awareness Week this year (1 to 7 November) will be based around the theme 200 Years of Parkinson’s Is Too Long. 2017 marks 200 years since Parkinson’s was recognised as a medical condition. This Parkinson’s Awareness Week we will acknowledge 200 years of progress in understanding and treating Parkinson’s but we will also send the message 200 years is too long to wait for a cure. “While 200 years is far too long for people to wait for a cure, there has been significant scientific progress in in the last few years and exciting research is taking place in New Zealand,” says Parkinson’s New Zealand Chief Executive Deirdre O’Sullivan. “But we’ve got to fight to protect Parkinson’s New Zealand’s services. That’s why in Parkinson’s Awareness Week 2017 we are asking the public to get involved.”

TAKE ACTION Volunteers are vital for all our branches and divisions during our Parkinson’s 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 info@parkinsons.org.nz or call 0800 473 4636 for more information.

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EXPLORE OUR RESOURCES

This year Parkinson’s New Zealand will partner again with Val Morgan Cinema Network, who over the last two years has given us over $280,000 of donated screen time on over 360 cinema screens for our commercial to increase awareness of Parkinson’s nationwide.

Parkinson’s New Zealand started with one urgent goal – provide information, education and support. This Parkinson’s Awareness Week, learn how you can get involved and help us provide more information and support.

Every share, like and donation can make a difference. Use the hashtag #ParkinsonsNZ to join the conversation on Facebook and Twitter and share your story as a person living with Parkinson's, a caregiver, fundraiser or family member by submitting your story today!

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 info@parkinsons.org.nz | Web www.parkinsons.org.nz www.facebook.com/parkinsonsnz & Twitter @Parkinsonsnz Follow us on Facebook

SEPTEMBER 2017

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ELECTION UPDATE

After the election In May we launched an election awareness campaign because we wanted to help you make your vote count in the General Election. We sent out questions to political parties about how they plan to improve life for people living with Parkinson’s. We received responses from Labour, the Green Party, New Zealand First and the Maori Party and we posted their responses in the June issue of The Parkinsonian. National, Act and United Future did not provide answers. Then you got involved. Thanks to your phone calls, emails and personal visits to your local MP’s offices, the National party submitted statements on their policies and we posted these responses on our website for you to read.

Our members, volunteers and staff are passionate champions for people with Parkinson’s. You have helped us identify who to approach in Parliament to support our work. We are getting in touch with MPs to brief them on key issues and urge them to help improve access for people with Parkinson’s. We feel strongly that government policy needs to improve for people living with Parkinson’s and we are working very hard to make sure this happens. Contact your local branch or division and find out how to make our voice even stronger. All branch and division details are on our website or call 0800 473 4636 for more information.

Disability Respite Strategy Caring for another person is challenging. That is why taking a break every so often is important for both the physical and mental health of carers. The Ministry of Health has launched a new Respite Strategy.

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The Ministry of Health’s new Disability Respite Strategy, Transforming Respite, aims to make it easier for carers of disabled people to have a break from their caring responsibilities. The strategy prioritises actions to set the future direction for improving disability respite support. Some of the changes to the respite model will include: • Offering disabled people and their families/whanau a flexible respite budget that they can use to take breaks in the ways that suit them best • Increasing the range of quality respite options available —this includes the development of new and expanded respite services • Recognising the value of respite and taking a lifelong approach to allocation and funding

• Making the administration and payment methods easier • Providing better access to information about respite and support to find and use the respite options available. The Ministry of Health states that the new strategy responds directly to what disabled people and their families/whanau told the Ministry of Health about their aspirations for the future. You can download and read the new strategy on the Ministry of Health’s website at www.health.govt.nz. Select the “Publications” menu at the top and select the “Disability” category from the menu on the right. Or email respitestrategy@moh.govt.nz Let us know what you think of this new strategy. Email us on info@parkinsons.org.nz or call 0800 473 4636

Stay On-Time!

TabTimer

helping to keep people on time

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helping to keep people on time

Medicine Reminders | Timers | Electronic Pill Boxes | Automated Pill Dispensers | Vibrating Watches & Clocks | Talking Watches & Clocks

visit:

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0800 TAB TIMER (0800 822 846)

F o r t e r m s a n d c o n d i t i o n s o f s a l e s e e w w w . T a b T i m e r . c o . n z . Ta b T i m e r ™ , ‘ h e l p s k e e p m e d i c a t i o n s o n t i m e ’ ™ , ‘ h e l p i n g t o k e e p p e o p l e o n - t i m e ’ ™ a n d t h e Ta b T i m e r ™ l o g o a r e t r a d e m a r k s o f T a b T i m e r P t y L t d © 2 0 1 6 A U A B N : 9 9 1 3 7 4 1 5 9 4 8

THE PARKINSONIAN


HOW YOU CAN HELP

Leave a lasting legacy You can make a real difference in the lives of people living with Parkinson’s by including Parkinson’s New Zealand in your Will. Making a provision in your will to donate to Parkinson’s New Zealand is one of the most significant gifts you can make. It could change lives for better and make a big difference to people living with Parkinson’s.

to your will). It’s important to do this process in consultation with your solicitor.

No matter how big or small, your bequest will be appreciated. It will help us provide services for people living with Parkinson’s now and for future generations.

If you do not have a solicitor you can contact the New Zealand Law Society 04 472 7837, www.lawsociety.org.nz, or Citizen’s Advice Bureau 0800 367 222, www.cab.org.nz

It is easy to include Parkinson’s New Zealand in your Will at the same time as providing for your loved ones. Your gift can be a specific sum, a percentage of your estate or even a specific asset.

For more information about leaving a gift to Parkinson’s New Zealand, please feel free to contact John Henton on 04 801 8850 or john@parkinsons.org.nz. You can also visit our website www.parkinsons.org.nz/bequests.

To create a new Will, we advise you to consult your family solicitor or a trustee company, such as the Public Trust or NZ Guardian Trust. They’ll help you create a will that reflects your wishes, ensuring they’re clearly understood, and can include a bequest to Parkinson’s New Zealand as part of this process.

If you have already left us a gift in your Will, we would like to know so we can personally thank and acknowledge you on behalf of the Parkinson’s community.

If you have an existing will, it can be updated to include a bequest to Parkinson’s New Zealand by making a codicil (a codicil is an addition

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THANK YOU

JAMES SEARLE SAY FOUNDATION

ROD MILNER MOTORS LTD Auckland supplier of disability vehicles Rod Milner Motors in Greenlane, Auckland will pay $500 per vehicle sold to each of our members who buys a vehicle from Rod Milner. Make sure you identify this to the team at Rod Milner Motors FIRST so they don’t miss out the pay-out to you. Phone: 0800 763645 Address: 580 Great South Road, Greenlane, Auckland Website: www.rodmilner.co.nz

SEPTEMBER 2017


NEWS FROM AROUND THE COUNTRY Thank you to our volunteers, sponsors and funders for helping us to increase awareness and raise funds throughout the year. Here is just a sample of the many events and activities taking place around the country. Find out how you can get involved in your area by visiting www.parkinsons.org.nz.

DR BARRY SNOW AT THE PARKINSON’S WELLINGTON SEMINAR

ROD AND RUTH SUTHERLAND

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NORTHLAND

TARANAKI

Parkinson’s Northland has organised a new ballroom dancing group. Led by instructor Chris Leitch, these hour-long dance classes are being held weekly at the Instep Dance Studio in Whangarei. Dance as a form of exercise is especially helpful for people with Parkinson’s.

New Counterpunch Parkinson's non-contact exercise classes have started in New Plymouth. This popular boxing programme is sweeping across New Zealand, with classes available in Auckland, Waikato, Christchurch, New Plymouth, Otago and starting soon in Wellington. We'd love to see Counterpunch Parkinson's go nationwide!

“For me, at the very least, dancing led to much-improved communication (at least for that hour) between my brain and what I wanted my body to do,” says Parkinson’s Northland Chairperson Peter Garelja. There are Parkinson’s dance classes taking place across New Zealand. For more information about Parkinson’s and Dance, please refer to the June 2016 issue of The Parkinsonian.

AUCKLAND We are pleased to announce that Aucklander Andy McDowell has been chosen as an Ambassador for the 5th World Parkinson Congress (WPC) 4-7 June 2019 in Kyoto, Japan. He will join 15 other Ambassadors from 12 other countries. Andy attended the recent congresses in Portland and Montreal, and his presentations at the congresses have been very proud moments for New Zealand. Congratulations Andy!

MANAWATU Parkinson's choirs are gaining popularity across New Zealand. Now Sing Loud, a choir in Palmerston North, is growing from strength to strength. This 12-member choir of people with Parkinson's recently sang their first recital in front of family and friends at the city's Seventh Day Adventist church. To find out more about Parkinson's choirs in your area contact your local Parkinson's New Zealand branch or division.

WELLINGTON Parkinson's Wellington hosted a seminar on Monday 17 July featuring guest speaker neurologist Dr Barry Snow who is the lead investigator in the Living Cell Technologies NTCELL clinical trial. Other speakers included a physiotherapist, a social worker, a speech language therapist and an occupational therapist. It was a great day with learning opportunities for everyone!

WAIRARAPA Parkinson’s Wairarapa member Rod Sutherland was celebrated on the Queen’s Birthday Honours List in June. Rod was one of 186 recipients, which recognises his work in the Wairarapa. Rod is a very active volunteer for Parkinson's Wairarapa. His wife Ruth was diagnosed with Parkinson's in 2006. He is the lynch pin of the Wairarapa street appeal during Parkinson’s Awareness Week, organising volunteers, using his contacts to gather major raffle prizes and leading the donation collection team at the A&P Show. Rod is a highly valued member of Parkinson's Wairarapa. We are thrilled Rod's hard work and dedication to his community has been recognised.

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.

THE PARKINSONIAN

Parkinsonian septemeber 2017 web  
Parkinsonian septemeber 2017 web  
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