VOL. 18 – NO.1
Creativity competition winners Congratulations to the winners of our Living with Parkinson’s Creativity Competition. Our judges were highly impressed by the standard of the entries and moved by the stories they saw reflected in the art works and poetry. Our thanks to everyone who shared their work. We’d also like to thank our Judges Vincent O’Sullivan (Poet Laureate) Barbara Strathdee (artist and author) and Mike Clare (photographer) and all of those who voted in the people’s choice section, your participation helped raise the profile of Parkinson’s in your communities and in the media.
PAINTING/DRAWING CATEGORY Parkinson’s Section
Untitled (Thinking about my ancestors) GRANT HOPE-EDE, AUCKLAND The Judge for the Painting/Drawing category, Barbara Strathdee, commented: “In this fine painting we see the mask of a person composed and still. The back of the mask releases the chaos of thoughts not shown on the person’s face. To the left of the picture is some intricate drawing of symbolic forms: wheels, stalks and leaves of plants, and even a human head peering out above a column of red on which the wheels are depicted. Below the head a perfect rose is placed. Each viewer must guess at the meanings these symbols hold for the artist, while responding to the entire painting in their own individual way. I sense beauty and strangeness. The mask dominates. This is the condition the artist must live with.”
Barbara thought another entry from the Painting/Drawing category in the Parkinson’s section was worth a special mention.
Dance with me ROSE JOHNSON, SILVERDALE Barbara commented: “At first the prose spoke to me both the text written on the drawing and the description accompanying the entry. Only afterwards did the drawing itself begin to communicate and I deciphered the shadowy figure personifying Parkinson’s manipulating the poles which decide the kind of movements the woman can make. The woman, who like the ‘wraith’, is masked, has no choice and her bent over body eloquently expresses her anguish. The structure of the drawing with the ‘V’ shape created by the poles contrasts well with the organic forms of woman and shadowy figure.”
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Non Parkinson’s Section The Mask of Parkinson’s KAYE HUBNER, TAURANGA Barbara commented: “This is a very accomplished painting and conveys a strong sense of how the person with the condition loses their ability to express their feelings with facial expressions. The play of forms is an indication of a skilled artist: the whites of the eye contrasted with the black eyes of the mask, the mouth of the human showing dismay and confusion compared to the straight line mouth of the mask giving nothing away. A strong composition of reds [the jersey and the mouth], browns [the jacket and the hair, nose, eyebrows, pupils and nose], and pale gold [of skin and background] are an indication of an experienced artist at work. And note the mask itself divided into a lit half and a shadowed side.”
POETRY CATEGORY Parkinson’s Section ‘The Parkie Meter Never Stops Ticking’ 2
JAMES NICOLLE, LOWER HUTT Bed at eleven awake since three, This never used to be the real me. Five thirty, time to get up and take the meds, While lucky people still sleep in their beds. My uninvited guest changed my life, Bloody PD you’ve cause me a lot of strife Off to the gym for a session with Kathryn my trainer. Gym bunny now, four days a week, with PD it’s a no brainer. Workout, back home shower and walk to the train, Catch up on sleep as I traverse Wellington’s terrain. Wellington rail, walking to work I’m back on my feet Bit like groundhog day - step ,repeat then repeat. Nine thirty and it’s time for the meds Work life balance is a now series of interlinking Parkies threads. This bloody disease never stops, BTW before my mind pops. Five rolls round as it does every day, Bugger missed my meds for that I’m going to pay! Least an hour off but the Parkie meters still ticking
Non Parkinson’s Section
Who the hell did I think I was tricking? Long off walk to the train, Fifty minutes and Im home again.
deep resistance to letting illness take over one’s whole life.
Six Thirty my appetite gone, what do I eat? I don’t really care just crank up the music and listen to the beat. Escape to another world free from the pain, Then reality hits and I wonder am I sane.
The very fact that someone wants to write a poem to say so is itself a triumphant thing, a refusal to be taken over, even though the same poem so courageously asks,
Night time is dilated like the edge of a black hole I thank God for my faith and my soul The parkie meter ticks all through the night Meds then bed, beware the night fright.
“Does Parkies define me, honestly I don’t know. The meter ticking, that’s the new status quo.”
Does Parkies define me, honestly I don’t know, The meter ticking, that’s the new status quo. The uninvited guest that lingers and stalks This is now how my life story talks.
Poetry Judge, Vincent O’Sullivan, remarked: “There’s a poem here by James N that’s called ‘The Parkie Meter Never Stops Ticking’. That’s a brilliant way to put what is the most repeated thought in these poems – wherever one is ‘parked’ by the way chance and luck place one, there is a
There’s an honesty like that ringing through each poem I read, as it confronts ‘the uninvited guest’. To write it out in a poem helps the writers to call things as they are. Another poem I would mention is by Catherine Mair of Katikati, realises a poem is a deliberately crafted way of using language, quite apart from what it may be about. Her poem is a personal story, of course, as most poems are. But it was one I especially admired for the way it was put together, the way its repetitions became a pattern, a chant of shock and surprise.”
CHRISTINE ATKINSON, AUCKLAND
His gifts of trembling, shaking, Quiet voice and gait,
Mr Parkinson came to visit, A year ago it was. He brought with him his luggage And suits he thought we’d fit.
Are but external baggage, The inner self and spirit are Robes to marvel at.
a poem that stands up to the long shadow that challenges any home it forces its way into. What so set down their own terms for dealing with it, were kindness and courage. There were few poems in either category, where I wasn’t struck by that.
He’s long outstayed his welcome With his unwanted traits,
“In the non Parkinsonian category, my pick was ‘The Unwelcome Visitor’,
It has been a privilege to read these poems. Kia kaha.”
The Unwelcome Visitor
But leaving us no option, He shares our home and waits.
PHOTOGRAPHY CATEGORY Parkinson’s Section Summer LLOYD JENKINS, AUCKLAND Category Judge, Wellington photographer Mike Clare Mike Clare: “In the People with Parkinson’s section I chose ‘83 Summers’ by Lloyd J - it is a powerful portrait that seems to convey a lot about the personality of the subject by using strong framing, interesting lighting and having a good rapport with the sitter.”
Non Parkinson’s Section Checking the Paddocks BRIGETTE BILBE, CHRISTCHURCH Caption: “Dad is in full time care but loves to come home for visits. This photo is a glimpse into the life of my mum who deals with Dad’s Parkinson’s so admirably. Mike Clare: “I chose ‘Checking the Paddocks’ by Brigette B as first place in the Non-Parkinsonian section. The image has a great mood enhanced by soft backlight on the subjects and a well-timed capture.”
The people’s choice section of our Living with Parkinson’s creativity competition was well supported and resulted in the following winners.
PAINTING/DRAWING People with Parkinson’s
The Mask of Parkinson’s
PHILIP HULSE WHANGAREI
KAY HUBNER TAURANGA
PHOTOGRAPHY People with Parkinson’s Light at the End of the Tunnel HELEN PENTECOST STOKES VALLEY
Non Parkinson’s Checking the Paddocks BRIGETTE BILBE CHRISTCHURCH
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POETRY People with Parkinson’s
Parkinson’s Has Come Into My Life
A Carer’s Perspective
GAIL WATSON, CHRISTCHURCH
JILL HALL, MANUREWA
Parkinson has come into my life. A most unwelcome guest. To overcome his limitations I'll try my very best. I'll ride my bike, exercise, walk and stand up tall. Which will hopefully prevent another fall ‘Cause they just happen without any warning at all. Broken bones and dislocations are painful and no fun Four fractured ribs and three vertebrae. Ouch –I’ve had a bad run Frustrations and challenges lie ahead – Like simply turning over in bed. Getting in and out is becoming a chore, Sometimes when I go to walk, one foot seems to be stuck to the floor. I often have trouble falling asleep Because my left foot wants to jump and leap. I have a satin nightie and a satin sheet It makes getting out easier and is a real treat. My voice is quieter so I have to think LOUD And when I speak, imagine I'm in a crowd. My balance is awful , my handwriting too, But thank God for the computer, I can still write to you.. So, with God's grace, kind friends and family, I hope I'll be able to live out my life quite happily.
I feel as though I also might be showing some traits of Parkinson’s, Watching the clock for the next event, next meal, next medication, Trips to the doctor, no overseas trips, no dancing Hawaiian. I’m one of many who faithfully care for bland faced Sarah or Ryan. We carers are a quiet, unseen, invisible and hardy task force, Dopamine, sinemet, depression are now part of our resource, Fifty years ago, I promised “for better or worse.” I still do endorse, I’ve proved love glues us together as we finish this course. With get up and go, I know that Parkinson’s is not part of me, Mow lawns, change light bulbs, drive car, and prune trees, Teach craft, sing in two choirs, train a third, none off key, Sunday church, organise ‘Come Walking.’ Dr Janet and I agree. Physical, mental and emotional exhaustion can take its toll, Helping, dressing, wiping, and feeding this lovable frustrated soul, Respite care, Carers, and Parkinson’s Group help to keep my control, Exercise, brain stimulation, Age Concern, healthy food, a nice casserole. This sometimes out of control person, I call Mr Jekyll or Mr Hyde, Needs me and others, considerate, devoted, dedicated and bright eyed, To ease him through long days and black nights, to generally provide, To stimulate, care, love and respect, this I do with great pride.
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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.
A WORD FROM THE CHIEF EXECUTIVE
Tena Koutou Katoa In this issue of the Parkinsonian we report on a recently announced venture, Brain Research New Zealand, which has been awarded the status of one of the Government’s Centres for Research Excellent (CoRE). Bringing together professionals from the Centre for Brain Research in Auckland with colleagues from the Universities of Otago, Canterbury and AUT, BRNZ will also reach out to a number of allied organisations and people. It will build and strengthen the relationship between scientists, researchers, clinicians and organisations such as ours working in the neurological space. This synergetic relationship is vital to progress with Parkinson’s therapies and the search for a cure. The establishment of BRNZ is particularly exciting news in terms of its goals of encouraging better brain health among New Zealanders to, among other things; help them lessen their chance of experiencing dementia. I would like to publicly acknowledge and congratulate BRNZ co-directors Professors Richard Faull and Cliff Abraham for their brilliant work to date and wish them and their team every future success. On a quite different matter; with its numerous facial aspects, difficulties swallowing and similar, Parkinson’s has many consequences for dental and oral care and you or someone you care for may find the Parkinson’s and dental health factsheet on pages 7 and 8 useful.
I hope you find the winning entries in our Parkinson’s creativity competition as striking and interesting as I did. The sentiments that came through in the various artworks and poems were certainly thought provoking and our panel of Judges was suitably impressed. We also have an article about Enduring Powers of Attorney, or EPAs, admittedly a sometimes difficult subject. However hard it is to discuss these things, though, it’s essential we are prepared and ensure we use the right legal instruments to protect our interests if we cannot do this ourselves in the future. Finally, we have a new feature on this page of the Parkinsonian. Our Clinical Leader, Stephanie Clare, takes questions directly from readers. Please, if you have a question, ask. I hope you’ve enjoyed some of what has been a brilliant summer for much of the country, wherever you are. Nga- mihi nui
ASK THE CLINICAL LEADER This is the first of a new regular feature in the Parkinsonian. Our Clinical Leader, Stephanie Clare, answers readers’ questions. Q: My mother is in process of moving from New Plymouth to live in Orakei, Auckland. She is 80 years old and has Parkinson’s. Can you tell me what I should do? A: We have Community Educators and support groups all across the country so she and your family will continue to be able to access our services. Her New Plymouth Community Educator can let your mother know the name of her new Community Educator or it can be found on our website or by calling us on 0800 473 4636. In this instance, Margaret McNab, Central Auckland would be your mother’s new Community Educator (phone 09 827 1447, mobile 027 520 4483). When she contacts Margaret, your mother can request the local newsletter and be added to their mailing list for activities such as exercise groups, support groups and carers groups. Margaret will arrange an introductory home visit with your mother and request her notes from the New Plymouth Community Educator.
Q; I was diagnosed with Parkinson’s five years ago. While my voice seems to me still okay, I am aware Parkinson’s can affect speech. When is the best time to start speech language therapy? A: We now know that early therapy rather than waiting until changes in voice are noticed is of significant value. Referrals to a Speech Language Therapist can be made on your behalf by a Community Educator. You can find the name of your nearest Community Educator by visiting www.parkinsons.org.nz and looking under your area for the Division closest to you. Factsheets also found on our website, for example “Speech and Parkinson’s,” can help with understanding the changes you may experience and provide tips for people with Parkinson’s and their families. With the advance of everyday technology, smartphones also offer tools to prompt speed of speech, volume, cueing or word-finding; a number of these apps are available on the web.
NEWS & RESEARCH PROTECTING CONNECTIONS IN BRAIN COULD STOP PARKINSON’S Researchers funded by Parkinson’s UK at University College London have been looking for a new way to stop Parkinson’s. They are investigating synapses--the sites that connect neurons.
The trial showed that safinamide helped reduce ‘off’ periods (when medications stopped working) and improved quality of life and mood. It may also help reduce levodopa-induced involuntary movements, called dyskinesia.
Synapses are sites where information is passed from one neuron to another. They are needed to regulate a variety of functions, including learning, memory, and the coordination of movements, such as walking.
Safinamide works like other MAO-B inhibitors that are already used to treat the symptoms of Parkinson’s. They prevent the breakdown of dopamine in the brain by blocking an enzyme that breaks it down, called monoamine oxidase type B (MAO-B).
There is a loss of synapses in the early stages of neurodegenerative conditions such as Parkinson’s. However, UCL research associate Dr Soledad Galli explains that
However, the new drug safinamide blocks the MAO-B enzyme in a slightly different way which may make it more effective as a Parkinson’s treatment in some situations.
It is difficult to say exactly how the loss of synapses contributes to Parkinson’s because there is no way we can detect Parkinson’s during the early stages. When people are diagnosed with Parkinson’s, as many as 60% to 80% of the neurons are already dead.
Previous research from animal studies that mimic the genetic component found in some cases of Parkinson’s has shown that a functional deficit and the loss of synapses occur before neurons die. In addition, this loss of synapses occurs with the development of motor symptoms. 6
patients) who were already taking levodopa.
The researchers think that the loss of synapses could cause the symptoms to appear in the early stages of Parkinson’s, something that is already known to happen in other neurological conditions such as Alzheimer’s and Huntington’s. In the current study, published in October in Nature Communications, the researchers showed that the death of synapses in the brain may be due to proteins called Wnt not working properly. The researchers gave mice drugs to stop Wnt proteins working and saw problems with movement, one of the main symptoms of Parkinson’s. The study suggests that restoring Wnt’s protective abilities in people with Parkinson’s could stop synapses dying, and the condition from progressing, but this still needs to be proved. If it can be shown that Wnt is involved in the early stages of Parkinson’s, there could be new possibilities for treatment targets and ways to detect Parkinson’s during the early stages. www.parkinsons.org.uk www.news-medical.net
EU APPROVES NEW PARKINSON’S MEDICATION In December the EU approved a new Parkinson’s drug called safinamide. It is the first completely new drug to be approved for treating Parkinson’s in the last 10 years. The drug was tested in a 2 year study in people with mid-tolate-stage Parkinson’s (including a number of New Zealand
E. COLI MAY HOLD ONE OF THE KEYS TO TREATING PARKINSON’S The gut bacteria E. coli is often associated with contaminated water and food, but researchers have discovered a protein in E. coli that may hold one of the keys to treating Parkinson’s. The protein called CsgC inhibits the accumulation of potentially toxic amyloids. Amyloids are formed by proteins that misfold and group together. When amyloids build up in the wrong place or time, they can damage brain tissue and cause cell death, explain The University of Michigan lead study author Margery Evans and Matthew Chapman, principal investigator and associate professor in U-M Molecular, Cellular, and Developmental Biology. The findings could point to a new approach to treating Parkinson’s and a way of targeting amyloids associated with Parkinson’s and other neurodegenerative conditions. In people with Parkinson’s, certain proteins can build up to form toxic amyloids in brain tissue, which is toxic to cells. While these amyloids are found in Parkinson’s and other conditions like Alzheimer’s, not all amyloids are harmful. Some cells, including those in E. coli, assemble helpful amyloids used for cell function. E. coli produce a curled amyloid system called curli outside the cell, where it’s protective. Although the curli fasten the E. coli bacteria to kitchen benches and intestine walls, where they can cause infections and make us sick, these helpful amyloids that E. coli produce do not form on the inside of the cell. The researchers investigated how E. coli prevented amyloids from forming inside cells. They found the CsgC protein is a very effective inhibitor of E. coli amyloid formation. The researchers also found that the CsgC protein inhibits amyloid formation of the kind associated with Parkinson’s. The study was published in the January online edition of the journal Molecular Cell. www.medicalxpress.com www.ns.umich.edu
EXERCISE MAY IMPROVE BALANCE, MOBILITY AND QUALITY OF LIFE A new study suggests exercise can improve balance, mobility and overall quality of life for people with Parkinson’s. The researchers of the University of Sydney in Australia published their findings in the December online issue of Neurology. For the study, 231 people with Parkinson’s either received their usual care or took part in an exercise programme. The exercise programme included 40 to 60 minutes of balance and leg strengthening exercises three times a week for six months. Although the exercises were prescribed and minimally supervised by a physical therapist, most of the exercises were performed by the patients in their homes. Study author Colleen G. Canning, Ph.D commented These results are unique because they were achieved with an exercise programme in which more than 87 percent of the prescribed exercises were undertaken independently by participants at home. Falling is a common problem for people with Parkinson’s, with 60 percent falling each year and two-thirds of those falling repeatedly. Compared to those in the control group, the number of falls by participants who exercised was reduced in people with less severe Parkinson’s—but not in those with more severe conditions. These results suggest that minimally supervised exercise programs aimed at reducing falls in people with Parkinson’s should be recommended early in the process of the condition. This is not the first study to emphasise the benefits of exercise for people with Parkinson’s. The researchers of the current study said the 70% reduction in falls for the group with less severe Parkinson’s is on par with the 67% reduction in falls in a 6-month, fully supervised trial of tai chi. For more information about the tai chi trial, see the December 2012 issue of The Parkinsonian. www.medscape.com www.medicalnewstoday.com
PORTABLE STIMULATOR BEING TESTED ON PEOPLE WITH PARKINSON’S In the later stages of Parkinson’s, people may have problems with balance. Although motor symptoms, such as impaired motor control, tremors and stiffness, are usually treated with medication, problems with balance do not usually improve with pharmacological treatment. Researchers at the University of Gothenburg in Sweden have shown that a weak electric “noise” can improve balance and
motor skills in people with Parkinson’s. With some help from NASA, the research team has developed and is testing a new portable device that electrically stimulates the balance organs to help improve balance and manage other symptoms of Parkinson’s. The device delivers an electric noise signal via electrodes to a nerve in the ear responsible for balance. The technology was first tested on rats and the results showed that noisy electric stimulation of the balance organs improved the animals’ balance and motor skills. The researchers have now tested the same method on ten people with Parkinson’s. The participants were not aware of when the signal was being delivered and they were tested in both medicated and unmedicated states. The results showed that noise stimulation improved both the participants’ balance and the combined symptoms such as walking, balance and symptom variations. The study is published in January in Brain Stimulation. The research team is developing the next generation of the device which will be smaller than a wallet and able to be carried in a pocket. It will be tested in a longer study to determine whether the therapeutic effects continue to last and whether there are any noticeable unwanted side effects. www.medicalxpress.com www.medgadget.com
NTCELL CLINICAL TRIAL UPDATE The final person was successfully implanted in biotechnology company Living Cell Technology Limited’s clinical trial of the regenerative cell therapy NTCELL for Parkinson’s. The operation took place at Auckland City Hospital in December. The 26-week trial, led by neurologist Dr Barry Snow, is an investigation of the safety and clinical effects of NTCELL. Dr Snow leads the Auckland Movement Disorders Clinic at the Auckland District Health Board and is an internationally recognised clinician and researcher in Parkinson’s. The trial involves surgically placing tiny capsules of choroid plexus cells from pigs into the brains of people with wellestablished Parkinson’s and experiencing a lot of problems with traditional therapy. This ground breaking treatment aims to slow or stop the dieback of dopamine pathway nerves by transplanting cells that release growth factors. LCT plans to present the results of the trial at the 19th International Congress of Parkinson’s Disease in San Diego in June 2015. For more information about NTCELL, see the December 2012 edition of The Parkinsonian. www.lctglobal.com
Olympians Swim for Parkinson’s in the 2015 Legends Relay The Swimming New Zealand Zonal Championships included a charity relay that featured many Olympic and Commonwealth Games swim stars from the past as well as Olympic rowing stars. The star of the night proved to be 97-year-old Kath Johnstone who swam in a team alongside Olympic swimmer Steven Kent. The teams raised more than $28,000 for their various charities. Thanks to our team who were 3rd in the amount of money raised (over $3000) and 6th in the pool. They were Olympic Swimmers Richard Lockhart, Natalie Wiegersma, Daniel Bell and Olympic Rower Juliette Drysdale.
PARKINSON’S AUCKLAND CHAIRPERSON BRIAN GARLICK WITH TEAM PARKINSON’S SWIMMERS RICHARD LOCKHART, NATALIE WIEGERSMA, DANIEL BELL AND OLYMPIC ROWER JULIETTE DRYSDALE.
ACTION IN THE POOL
PSNZ to Work With New Centre for Research Excellence 8
Parkinson’s New Zealand welcomes the recent establishment of a new Centre for Research Excellent (CoRE*), focussed on the aging brain and age-related neurological disorders. Brain Research New Zealand (Rangahau Roro Aotearoa) brings together researchers from the Centre for Brain Research in Auckland with colleagues from AUT, Canterbury and Otago Universities, The collaboration focusses on a number of key themes one of which is prevention, intervention and delivery. PSNZ will work with BRNZ to educate the public on brain health and disease prevention strategies - this is particularly relevant for the significant proportion of people with Parkinson’s who experience Parkinson’s dementia. PSNZ will also inform people with Parkinson’s and others in our Parkinson’s community on BRNZ’s work and possible therapies and similar and help ensure patient’s concerns are conveyed to researchers. Led by co-directors Distinguished Professor Richard Faull (Auckland) and Professor Wickliffe Abraham (Otago), Brain Research New Zealand, combines scientific and clinical expertise and its vision is “to enable people to age well with a healthy brain and to the delay the onset of these aging-related brain disorders.” The Deputy Director of the Human Brain Bank, Dr Maurice Curtis, told the Parkinsonian that the BRNZ considers PSNZ an important organisation to work with. “There is a significant role for Parkinson’s New Zealand in raising awareness of the novel treatments and scientific advances in Parkinson’s research. It is important to communicate the latest research results, their implications and the hope for future
therapies to community based organisations; they in turn can communicate these to their patients,” Dr Curtis said. “We have always had a very good relationship with community organisations and it is critical that we work together toward educating the public about brain health, disease prevention strategies and future therapies that are under trial in the laboratory. Patients rely heavily on Parkinson’s New and its Divisions throughout the country for support and help to improve their lives and we would like to tap into their connections as much as possible. “The CoRE seeks to become more involved with community organisations so that those affected by neurological diseases can help inform the scientists about issues that affect those with brain diseases and scientists can inform patients about the future direction of science and new potential treatments.” *From the Tertiary Education Commission website: The Centres of Research Excellence (CoREs) Fund was established in 2001 to encourage the development of excellent tertiary education-based research that is collaborative, strategically focused and creates significant knowledge transfer activities. CoREs are inter-institutional research networks, with researchers working together on commonly agreed work programmes. CoREs make a contribution to New Zealand’s development and link to user groups. They also build research capacity and capabilities through post-graduate programmes and the training of new researchers.
Parkinson’s and dental health HOW CAN PARKINSON’S CHANGE THE WAY YOU LOOK AFTER YOUR TEETH?
WHAT CAN I DO TO IMPROVE MY DENTAL HYGIENE?
The physical symptoms of Parkinson’s can present challenges both for daily dental hygiene and regular visits to the dentist. Poor motor function means nearly half of all people with Parkinson’s have difficulty with their daily oral hygiene routine. Tooth brushing, flossing and mouth rinsing require co-ordination, digital dexterity and tongue-cheek-lip control. Tremor and other movement disorders associated with Parkinson’s can cause difficulty for dental hygiene routines. Some Parkinson’s medications lead to a dry mouth, which increases the risk of tooth decay and infections. Tooth grinding at night is also common in Parkinson’s patients and can be the cause of abnormal wear and tear on teeth.
The key to good dental health is consistent preventive dental care. You can reduce the number of times a day that you eat sugar or sugary foods. Ensure your dentures are cleaned daily. It’s vital that any dental problems are identified and treated in their early stages, so visit your dentist and hygienist every six to 12 months. If you are able to do so safely, use a non-alcohol mouthwash to keep your mouth clean. (Please note some people with Parkinson’s are at risk of choking when using mouthwash. You can ask your GP, Community Educator or Support Worker about whether using mouthwash is safe for you).
Yet, a healthy mouth is critical to chewing, tasting, swallowing and speaking. For people who have difficulty swallowing, good dental hygiene is important to help prevent chest infections.
You need to ensure you brush your teeth at least once a day (preferably twice), making sure you clean all sides of your teeth. If you find brushing your teeth tiring, you could clean one part of your mouth in the morning and the other in the evening. An electric toothbrush provides the repetitive motion required to clean teeth effectively and may make cleaning your teeth easier. Cleaning between teeth with floss or special brushes is important. There are special holders for floss which can make it easier to use. Your dentist may be able to prescribe you with a fluoride gel to help prevent tooth decay. They may also be able to provide strategies for dealing with a dry mouth. If your carer helps you clean your teeth, they may find it easier to stand behind you (like a dentist does) to effectively brush and floss your teeth.
WHAT HAPPENS WHEN TEETH AREN’T HEALTHY? A cavity or decay of a tooth is known as dental caries. Oral bacteria combine with foods that contain sugar or starch to produce acids, which eat away at tooth enamel. About 9 out of 10 adults have some type of tooth decay. Prevention includes good oral hygiene through brushing twice daily, flossing, eating nutritious meals and limiting snacking, and visiting the dentist on a regular basis. Another common problem is dental abscesses. This is a collection of pus that accumulates in teeth or gums as a result of bacterial infection giving rise to a severe throbbing pain. It is caused by consuming sugary or starchy food and poor dental hygiene and is treated by a dentist draining the pus and possibly removing an infected tooth. You can reduce the likelihood of suffering from dental abscesses through following the prevention tips for tooth decay already mentioned.
TIPS FOR PEOPLE WITH NATURAL TEETH
TIPS FOR PEOPLE WITH DENTURES Some of the symptoms of Parkinson’s may make wearing dentures difficult, for example: loss of muscle tone, difficulty controlling facial muscles, dry mouth and problems swallowing. It is important your dentures fit you correctly, because badly fitting dentures can cause problems with speech and damage your gums, which may lead to infection and problems eating.
BADLY DECAYED TEETH
FACT SHEET – CONTINUED FROM PREVIOUS PAGE
There are also behavioural changes in some people with Parkinson’s that may negatively impact on dental care. These include apathy, depression and forgetfulness, all of which may lead a person with Parkinson’s to pay less attention to their daily dental health. You may want to keep this in mind if your Parkinson’s means you are depressed or apathetic.
TIPS FOR DENTIST’S VISITS It’s important that people with Parkinson’s visit their dentist every 6 to 12 months for a check up. Some symptoms of Parkinson’s can be aggravated by anxiety so it is important to make your visit to the dentist as low stress as possible. Some tips when visiting your dentist: • Book an early morning visit as the waiting times are likely to be shorter. • If you are prone to troublesome dyskinesia it will be easier
if you time your visit for a period when your dyskinesia is minimal. • If you take levodopa, take it 60 to 90 minutes before your appointment so your dentist visit coincides with the drug’s peak response period. • Make several brief visits to the dentist for any remedial work you require, rather than one long visit. • Tell your dentist about all the medications you take, including over the counter medicines, vitamins and herbal supplements. You may find it difficult to hold your mouth open for long periods of time and to control your tongue movements and swallowing. Your dentist has special devices that can help. For example, a rubber bite block may be placed between your teeth to keep your mouth open and reduce stress on your muscles. A tongue retractor may be used to keep your tongue in one place.
If you would like further information about Parkinson’s to pass on to your dentist, please contact Parkinson’s New Zealand on 0800 473 4636. With thanks to Mr. David Banks BDS, BSc, Carterton
Condition Management People with Parkinson’s, health professionals and carers have identified the top ten priorities for research into the management of the condition in a study by Parkinson’s UK and the University of East Anglia. Commissioned by Parkinson’s UK, people with direct and indirect personal experience of Parkinson’s identified gaps in the existing evidence to address everyday practicalities in the management of the complexities of Parkinson’s. Patients said the overarching research aspiration was an effective cure for Parkinson’s. However, while we waited for this more research was needed into the management of Parkinson’s. Top of the list, which was narrowed down from a list of 94 uncertainties, was the need to identify what treatments help reduce balance problems and falls in people with Parkinson’s. The top 10 priorities 1. Balance and falls. 2. Stress and anxiety 3. Uncontrollable movements 4. Personalised treatments 5. Dementia 6. Mild thinking and memory problems 7. Monitoring symptoms 8. Sleep 9. Dexterity 10. Urinary problems.
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Published on Mar 2, 2015