VOL. 16 – NO.2
2013 Recognition Awards There are many inspirational people in the Parkinson’s community. To recognise these people, and to mark our 30th anniversary, Parkinson’s New Zealand called for nominations for five categories of awards.
AWARD PRESENTERS AND RECIPIENTS
The awards were presented to the winners of each category at a ceremony held at Parliament on 5 April. The awards ceremony was opened by Annette King, MP and Labour spokesperson for Health. Actor Ray Henwood did a fabulous job as master of ceremony on the evening and we were fortunate to have our Ambassador Jordan Luck present the prize for creativity. The winners in each of the categories were:
for charities including working at the North Shore Hospice three days a week. He sings with a choir and performs with a drama group. Don also writes short stories, poetry and he has written two books about his experiences living with Parkinson’s.
THE SIR PETER SNELL ‘KEEP MOVING ’ AWARD
THE RON GREENWOOD COMMUNITY SPIRIT AWARD
This award is given to someone who has Parkinson’s and endeavours to remain active and takes part in exercise to the best of their ability.
Don Woodward, Auckland Branch
Ron Rickman, Taranaki Division
This award recognises a person who has Parkinson’s and contributes to the wider community. Don Woodward’s contribution to his community is so valued he received eight nominations, the most of any nominee.
Ron makes exercise a priority in his life. In 2008 he attended the PSNZ Outward Bound course and took on board what he discovered during the six day course. He has continued to push new boundaries and undertake new challenges. He also encourages others to do the same.
Don has had Parkinson’s for over 25 years having been diagnosed aged 40. This has not stopped him from volunteering for sports clubs as a rowing and rugby coach. He also volunteers
Ron was one of Taranaki Division’s first members to trial using Nordic Poles and continues to use them on a daily basis.
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The awards ceremony was opened by Annette King, MP and Labour spokesperson for Health. Actor Ray Henwood did a fabulous job as master of ceremony on the evening and we were fortunate to have our Ambassador Jordan Luck present the prize for creativity. Russell continues to enjoy his photography hobby however his Parkinson’s tremor means he often needs to use a tripod now.
THE SIR DAVID LEVENE VOLUNTEER AWARD Kevin Miles, Kapiti/Horowhenua Division This award recognises a volunteer who gives outstanding service to the Society. Kevin Miles has volunteered for his local committee for many years and is currently the division’s chairperson. He is committed to providing a quality service to the members and is constantly looking for new ways to improve the service and the income to support the service.
JORDAN LUCK, ANNETTE KING, RAY HENWOOD, DEIRDRE O’SULLIVAN AND PAUL EAGLE
Last year he set himself a challenge to complete the Taranaki Daily News Half Marathon. So he walked everyday and achieved this goal in a very good time. Ron gets a lot out of the activities he pursues and encourages other people to do the same.
THE GUS & IRENE FISHER CARPE DIEM AWARD This award recognises a person with Parkinson’s who ‘seizes the day’ through their passion for work, creativity or a hobby. There were two awards given in this category.
Pippa Carvell, Wellington Division Pippa’s art work is original and thought provoking. She produces intricate line drawings that, because of the tremor in her hand, have a 3D effect. Pippa says all of the lines in her drawings start as straight lines but get warped by the tremor. “Parkinson’s creates the art but it can ruin it too” she says. In 2012 Pippa’s art was selected to be exhibited at The Museum of Everything in London and at the time of the awards ceremony was touring Europe. “Creativity often allows the voiceless to be heard” Pippa says. “Having Parkinson’s you get told you can’t do this and you can’t do that. I am a quiet person and through my art I can shout, my art work is my scream”.
Kevin has been an unfailing support not only for his partner Sandy who has had Parkinson’s for over 20 years, but also for hundreds of other families living with Parkinson’s. In particular his support and understanding of other partners of people with early onset Parkinson’s has been inspirational. Kevin and Sandy were a driving force and founding members of UPBEAT, the special interest group for people with early onset Parkinson’s.
THE ANDREW DUNN VOLUNTEER AWARD Elizabeth Swift, Northland Division This award recognises a volunteer who gives outstanding service to the Society. Elizabeth Swift’s involvement with the Northland Division dates back over 25 years when she and her husband Don joined the newly formed division. As the division had no paid staff in the early days Elizabeth and Don used to visit others with Parkinson’s to provide encouragement and support. Since then, Elizabeth has helped the division and its members in many ways. She has supported people who are newly diagnosed, started a carer support group which she ran for 12 years and organised fundraising activities. She is a ‘people person’ who loves to relate to people who are on a similar journey with Parkinson’s. She continues to visit people with Parkinson’s living in rest homes.
Jean and Russell Adams, West Coast Division Jean and Russell work as a team, making it impossible to give this award to just one of them. On the West Coast it is hard to find much happening that Jean and Russell haven’t contributed time or wisdom to. Jean was instrumental in setting up the Parkinson’s group on the West Coast. She has been involved in creating fundraising events like Art in the Park, the annual Craft Fair and the annual Wool Drive. Russell ‘seizes’ each day doing the things he loves to do. He continues to maintain their lifestyle block and tends his vegetable gardens and greenhouse.
HIGHLY COMMENDED Chris Hinton, Lorraine Turner, Margaret Griffiths, Nancy Stunz, Robin Prichard, Diana Adlam, Jim Hall, June Grove, Maureen Martin, Morris Sands, Winston Watson, Cathy Christie, Fran Allcock, Helen Hall, Susie Abraham, Christopher Bryant, Colin Murchison, Colleen Pryce, Garth Jennings, Gloria Manson, John Bennion, John Gregory, John Harris, Ken Gavin, Michael Pigott, Ron Parker, Ruth Sutherland.
A WORD FROM THE CHIEF EXECUTIVE
Tena Koutou Katoa It has been a busy few months for Parkinson’s New Zealand. In April we held our AGM and it was wonderful to see old friends and meet people new to the Parkinson’s family. The attendees at the AGM are made up of delegates and observers from each of the local divisions and branches. This ensures the voices of our members are heard when decisions about the running of our organisation are made. The financial climate has made things tough both for National Office and for many of our divisions. It was agreed that to financially assist the divisions National Office will send out a couple of appeals each year to support our work both on a national and local level. The first of these is enclosed with this magazine. We ask anyone who can support this appeal to make a donation to enable us to keep up the high standard of service to people with Parkinson’s around New Zealand. It was an honour to meet the recipients of the 2013 Parkinson’s Recognition Awards. The ceremony was held at Parliament in the Grand Hall, a most beautiful venue. We were inundated with nominations and the judges found it very difficult to decide who of the many worthy nominees should receive the awards. As a result of this there were a number of people who were
awarded highly commended certificates. Congratulations to all those who were recognised, you are truly inspirational. I am delighted to welcome our new Clinical Leader, Stephanie Clare to the team at National Office. The Clinical Leader provides support to the field officers and ensures excellence in the service they deliver. If a field officer needs help or advice on dealing with a situation, Stephanie is the person they can call on. We look forward to working with her. The Asia Pacific Parkinson’s Association is holding a conference in Sydney 15 – 16 June. Those of you who use Facebook or Twitter can keep up with what is happening at the conference by ‘Liking’ or ‘Following’ Parkinson’s NZ on our pages (details are at the bottom of this page). A full report on this conference will be in the next edition of The Parkinsonian and information will also be available on our website. Nga mihi
PARKINSON’S NEW ZEALAND AGM Parkinson’s New Zealand held its annual workshop and AGM April 5 – 6 April. This event was attended by 44 delegates and observers representing divisions from around the country. The workshop and AGM are an opportunity for division representatives to contribute to the direction the organisation is headed in and be updated on changes they need to be aware of in the sector. One of the presentations was on the proposed new accounting and auditing requirements for not for profit organisations like ours. A number of new board members were voted onto the Board of Parkinson’s New Zealand to replace those who had stood down. Andrew Dunn, who was one of the founders of this organisation 30 years ago, was made Chair of the Board.
The Board are: Andrew Dunn, Murray Carey, Garry Frater, Gordon Hancock, Kathy Jenkins, Michael Sinclair, Kirby Taylor, Judi Weir.
PARKINSON’S NEW ZEALAND | PO Box 11-067, Manners St, Wellington 6142 Phone 04 472 2796 | Freephone 0800 473 4636 (0800 4PD INFO) | Fax 04 472 2162 Email firstname.lastname@example.org | Web www.parkinsons.org.nz www.facebook.com/parkinsonsnz & Twitter @Parkinsonsnz Follow us on Facebook
NEWS & RESEARCH NEW TELEPHONE SERVICE FOR HEARING IMPAIRED IN NEW ZEALAND
• $100 million to help meet population changes and cost pressures in disability support services.
A new Government-funded telephone service for the hearing impaired was launched on 1 March. People who struggle to hear on the phone can use the caption-based service that will allow them to take part in telephone conversations at almost the same speed as ordinary conversations.
• $48 million for more elective operations such as hip replacements and cataracts.
Using a specially-designed phone, called a CapTel phone, the user calls out or answers as usual but the other party’s part of the conversation is accompanied by word-for-word captions of what they are saying. These can be read from a small screen on the phone. The captions are generated and transmitted via the internet with a delay of about two seconds. The captioning service is available for calls every day between 8am and 9pm. Although the service is free, you need to pay a one-off cost of $323 for the CapTel phone. You will also need a land-line and an internet connection. For more information see captel.co.nz.
WHITE HOUSE INVESTS $100 MILLION INTO ‘BRAIN MAPPING’ PROJECT In April US President Barack Obama launched The BRAIN initiative, describing it as ‘the next great American project’ and comparing it to the economic and scientific potential of the Human Genome Project that mapped DNA.
The Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative is focused on developing tools for mapping the brain. These new technologies will allow researchers to explore how the brain records, processes, uses, stores, and retrieves vast quantities of information, and shed light on the complex links between brain function and behaviour. Ultimately it is hoped that this will help them find new ways to understand and treat brain disorders such as Parkinson’s. While the details of the project are still being developed the US Government has announced that they will be putting US$100 million into the Initiative.
In response to the Court of Appeal’s decision in Ministry of Health v Atkinson and others, the Government also announced that it will provide $92 million over four years to pay family members who care for their disabled adult children. Overall health received around a third of all new operating funding in the Budget. New Zealand Government Press Release
DEEP BRAIN STIMULATION FOR EARLY PARKINSON’S A study reported in New England Journal of Medicine in February suggests that deep brain stimulation (DBS) may offer benefits before the appearance of severe motor complications which is earlier in the course of Parkinson’s than it is usually performed. In the randomised controlled study a group of patients with relatively mild early motor symptoms of Parkinson’s were treated with either DBS plus medication or medication alone. On several key measures of quality of life and motor function, the group that received DBS did better than those receiving medication alone. The researchers commented that the study suggests that that DBS in combination with medication can “improve motor symptoms better than medical therapy alone at this earlier stage of Parkinson’s”. They also note that “neurostimulation may be a therapeutic option for patients at an earlier stage than current recommendations suggest.” medscape.com Note: you can read more about deep brain stimulation on pages 7-9.
White House Press Release
INCREASE FOR AGED CARE ANNOUNCED IN HEALTH BUDGET Budget 2013 provided (over four years): • $20 million in home-based support to help older New Zealanders live in their homes longer. • $12 million for dementia-bed subsidies to encourage further investment in dementia beds. • $2 million for a dementia awareness/early detection programme. • $1.5 million towards training aged-care staff to carry out the new regular interRAI assessments of their residents’ health and wellbeing.
EARLY SYMPTOMS OF PARKINSON’S While movement problems are the main symptom of Parkinson’s, most people also experience a number of non-motor symptoms. These can affect their quality of life as much, if not more, than the motor symptoms. Many of these symptoms occur even in the early course of the condition, with some preceding the onset of motor symptoms. A study published in Neurology earlier this year compared 159 people with newly diagnosed Parkinson’s to 99 people of similar ages who did not have the condition. Participants were asked whether they experienced any of the 30 non-motor symptoms screened for, including sexual problems, sleep problems and gastrointestinal problems.
• $1.2 million over three years for dementia-related training for health care workers.
Those with Parkinson’s had an average of eight of the non-motor problems, compared to three for the people who did not have the disorder, with certain symptoms being particularly common.
• In addition, DHBs have been funded to invest an additional $33.2 million in aged-residential-care subsidies over four years.
A total of 56% of the people with Parkinson’s had problems with excess saliva or drooling, compared to 6% of those without
the condition. Constipation (42% of those with Parkinson’s compared to 7% of the control group) and anxiety (43% vs 10%) were also much more prevalent in people with Parkinson’s. The researcher commented “These results show that Parkinson’s affects many systems in the body, even in its earliest stages. Both doctors and patients need to bring these symptoms up and consider available treatments.” Another non-motor symptom of Parkinson’s that is often experienced early is REM sleep disorder. Researchers have theorised that the disorder is an early symptom of a Lewy body condition and that with sufficient follow-up, most cases will eventually be diagnosed with Parkinson’s or another Parkinsonism condition such as Dementia with Lewy Bodies. In a study reported in The Lancet Neurology researchers followed a group of 44 people with REM sleep disorder for 14 years. At their latest assessment of the group (2012) they found that 82% of the participants had developed a defined neurodegenerative syndrome. Most had developed their condition within 10 years of their diagnosis with REM sleep disorder. Of the four that remained free of a diagnosed neurological condition, tests showed that two had an impaired sense of smell (another early symptom) and in all four brain imaging showed some changes in dopamine transporter activity. Of the three patients who died during the study, all were confirmed to have widespread Lewy bodies in their brains. sciencedaily.com The Lancet Neurology, Volume 12, Issue 5, Pages 443 - 453, May 2013
IS GENETIC PARKINSON’S A DIFFERENT FORM OF THE CONDITION? A small percentage of people who develop Parkinson’s do so because of a mutation in a gene called parkin. This genetic form of Parkinson’s shows some other differences to the more common sporadic form. People with the parkin form of Parkinson’s are diagnosed earlier (in their early 30s); they have milder symptoms that respond well to Levodopa treatment and progress slowly. There are also some differences in the brains of people with sporadic and genetic Parkinson’s. This has raised the question of whether they are actually distinct disorders. To help answer the question researchers at University College London compared clinical, genetic and post-mortem findings of three groups of people; five unrelated people with parkin mutations, five people with sporadic Parkinson’s and four controls. The study confirmed the clinical differences. On examining their brains they found that people with the parkin mutation had a similar loss of dopamine neurons in the substantia nigra region of the brain to people with sporadic Parkinson’s. However, these people did not have nearly the same loss of neurons in other brain regions, including parts that affect cognitive function. People with parkin mutations either had very few Lewy bodies or none at all. This current study supports the theory that Parkinson’s caused by a mutation in the parkin gene is not identical to the sporadic
form of the condition. This is important because it will help people whose Parkinson’s is genetic, along with their families, to better understand how their condition may be likely to progress and how to prepare accordingly. But it is also important for research. If genetic and sporadic Parkinson’s progress and respond differently to treatment, this has implications for who is involved in testing new medications. It could also change how we understand the genetics of Parkinson’s and the role of Lewy bodies in the condition. Parkinson’s Disease Foundation News 29 March 2013
PARKINSON’S AND CHOCOLATE The link between Parkinson’s and coffee is by now well-known, if not well-understood but it is not the only delicious food item that researchers have investigated. There have been a few studies on Parkinson’s and chocolate as well. A 2009 German group using a self-reported questionnaire of people with Parkinson’s and their partners found that people with Parkinson’s eat more chocolate than those without the condition. The increase was specific to chocolate as consumption of non-chocolate sweets was similar in both groups. It was also independent of any symptoms of depression. They described the reasons for this increase as ‘elusive’ but suggested that one or more component in chocolate (caffeine being one of them) may have potential antiparkinsonian effects. The same group went on to run a trial of the possible benefits. In this study, reported in 2012, they split their test group into two. One group ate 200 g of dark chocolate containing 80 % cacao; the other got a dose of cacao-free white ‘chocolate’. The motor function of both groups was tested one hour and then three hours after consumption. Unfortunately the real chocolate group did not show significant improvement over the white chocolate group. They had to conclude that chocolate does not have an effect on motor symptoms. In this study they also measured levels of ß-phenylethylamine (ß-PEA), one of the chocolate ingredients that may have effects on Parkinson’s. While the German group were suggesting possible positive effects, studies in mice have suggested that this chemical can produce parkinsonism symptoms. Based on these rodent studies an Indian group has recently suggested that consumption of food with ß-PEA (it is in wine and cheese as well) might cause damage to dopaminergic neurons and cause Parkinson’s. So clearly the link, if any, between chocolate and Parkinson’s remains elusive. Journal of Neurology, March 2009, Volume 256, Issue 3, pp 488492 and November 2012, Volume 259, Issue 11, pp 2447-2451 Neuroscience Bulletin , April 2013
OUTWARD BOUND Parkinson’s New Zealand’s UPBEAT Outward Bound course was held this year 14 – 19 April. Twelve people attended the course, overcoming challenges and completing tasks many thought they could no longer achieve. Here’s what some of the participants had to say about the course. “For me Outward Bound showed me that I do not have to use the excuse of Parkinson’s to not do something, I can do it even if it is a bit slower.” Neil Griffith “What an experience of a lifetime! It was both an honour and privilege to have taken part in such a worthwhile event … The six day course was challenging and yet exciting, tiring and exhilarating and because we felt safe we dared to have a go”. Irena Roberts
“I am proud that I finished the course and got the t-shirt but it wouldn’t have been possible without everyone in the group helping me. It has made me accept my Parkinson’s yet get outside the box and live in the moment.” Barbara Davies “A fantastic opportunity to challenge body and mind with a great group of people. I learnt a lot from everyone.” Tony Poole
“It was an amazing, awesome experience. The instructors were wonderful and pushed us just enough and seeing everybody do the activities was really inspiring, especially knowing that everyone has difficulties doing things to a different extent. Even the cold swims in the sea every morning didn’t seem so bad doing it all together.” Karen Llemra “I enjoyed the company of everyone and it was great to be able to discuss with other people with Parkinson’s where they were at on their journey, and what worked for them. I found some of the members to be a real inspiration with their positive approach to all the activities.” Monica Barclay
EXERCISE Strength exercises should only be done every other day. STANDING UP FROM A CHAIR
(1) Sit on a chair which is as low to the ground as you can cope with and move your bottom forward in the chair. (2) Place your feet hip distance apart and push down firmly through your legs and stand up. (3) If possible do not use your hands, keep them crossed over your chest. (4) Repeat 10 times.
Deep Brain Stimulation WHAT IS DEEP BRAIN STIMULATION? Deep Brain Stimulation (DBS) is a treatment, not a cure, for Parkinson’s. It is a therapy that treats a number of the symptoms of Parkinson’s. DBS uses mild electrical pulses to stimulate a precisely targeted area of the brain. It is thought this therapy works by ‘stunning’ the target area which blocks the abnormal nerve signals being transmitted by areas in the brain that are not functioning properly. As a result of the symptoms being better controlled by the DBS, the person usually has a reduction in the medication they need to take. The average reduction in medication of people who have had DBS is 30% to 40%. In New Zealand DBS is only carried out on a small number (less than 20) of highly selected patients each year. This is because there are only certain patients in whom it will work satisfactorily. The majority of these people have Parkinson’s although DBS is also used to treat some other conditions. One of the advantages of DBS is that it does not cause permanent damage to healthy brain tissue by destroying nerve cells. So if a newer more promising treatment or a cure is developed in the future, the DBS procedure can be reversed.
WHAT SYMPTOMS ARE TREATED BY DBS? The main symptoms that are treated by DBS are • Dyskinesia – involuntary or abnormal movements, from writhing and spasms to jerks and twitches, which can affect any part of the body and vary in their severity. • Motor fluctuations – slowness and stiffness and /or weakness. This may also include ‘on-off syndrome’, the abrupt and unpredictable changes in mobility that occur in some people with Parkinson’s. In the ‘on’ state they are able to move and in the ‘off’ state may be virtually immobile. • Tremor – shaking movements of the hands and sometimes the legs, neck, face, or jaw that occurs in people with Parkinson’s.
WHEN IS DBS CONSIDERED? When a person first goes on Levodopa (Sinemet or Madopar) treatment they have a ‘honeymoon’ period where the effect of the medication is good and there is little need to change the dosage or when the medication is taken. This period may last somewhere between three to seven years. Then the person may begin to have problems with dyskinesia and/or motor fluctuations. It may be that the dose of Levodopa they are taking doesn’t seem to last as long or it isn’t as effective at controlling the symptoms of Parkinson’s. The person’s doctor or neurologist may adjust the timings or dosage of the medication, or change the drugs the person is on. They may try putting the person on Apomorphine which is administered under the skin by a pump and may give better control of Parkinson’s symptoms than Levodopa alone. Once all the other available
options have been exhausted DBS can be considered if the person is likely to meet the criteria for this treatment.
WHAT ARE THE CRITERIA? There are only certain people for whom DBS will work well. In order to assess a person’s suitability the following factors are taken into account. • Levodopa responsive – if a person does not respond well to Levodopa and it has little effect on their condition then they will not respond well to DBS. • General health – the person must be fit enough to undergo the operation and healthy enough that there is a reasonable expectation they will not die within the next five years of some other medical condition. • Emotionally stable – the part of the brain that is stimulated is closely connected to the area of the brain that controls emotions. Because of this people with unstable or untreatable emotional conditions may not be suitable to receive DBS. • Cognitive decline – one of the symptoms of Parkinson’s is cognitive decline. This can range from being very mild to people having dementia which is quite limiting. It is known from overseas research that people with advanced cognitive decline don’t respond well to DBS. • Age – there is evidence that the elderly don’t do so well with DBS surgery and the risk of complications are higher. While there is an age limit of 70 years for the surgery, people who are ‘young for their age’ at 70 may still be considered. • Have had Parkinson’s for five years or more – there are a number of conditions that in the early stages look like Parkinson’s but aren’t. To ensure that the person being treated definitely has Parkinson’s they usually need to have been diagnosed at least five years ago, however this criteria is not rigid.
WHAT IS THE ASSESSMENT PROCESS? Usually a neurologist will refer a person to the Movement Disorders Clinic, Neurology Department, at Auckland City Hospital (the Centre for DBS in New Zealand) if they think they are a candidate for DBS. The Neurologist in charge of DBS will ask for supporting information and often request the candidate provide a home video showing them at their best on medication, and at their worst both with bad dyskinesia and in an ‘off’ state. This information is reviewed by the Neurologist and the Movement Disorder Nurse who decide if the person is a likely candidate and arrange for them to come to Auckland for an assessment. During the two day assessment the candidate will • Meet with one of the Auckland Hospital’s Movement Disorders Clinic Neurologists to discuss the procedure, its risks and the benefits of having DBS.
FACT SHEET – CONTINUED FROM PREVIOUS PAGE
• Meet with the Movement Disorder Nurse who also discusses the procedure with them and the arrangements that will need to be made prior to the operation if they are accepted. • Undergo a Levodopa Challenge Test – during this test the person comes completely off their medication so that their condition can be assessed. They then go back on their medication so the effect of the Levodopa can be seen. Usually a video is taken of the person performing tasks while on and off their medication so the difference can be seen by others. If the Levodopa appears to have little or no effect on the person’s condition then DBS will also have little effect on their condition. • Meet with a psychologist and psychiatrist for assessment. There is no pass or fail in this part of the test, it is an assessment of the person’s current situation. It may be that as a result of this assessment it is decided that the person should undergo some treatment prior to undergoing DBS to ensure they are in the best psychological and psychiatric state for the procedure.
WHO DECIDES IF YOU ARE ELIGIBLE FOR DBS?
There is a National Deep Brain Stimulation Committee who decides if a person is suitable for the surgery. The Auckland Hospital DBS group meet on a monthly basis and review the assessments of the people who have been put forward to undergo the surgery and decide if this is the right treatment for the person. Once accepted, while there is no waiting list for the operation, it will usually be three to six months until the procedure is carried out.
WHAT DOES THE SURGERY INVOLVE?
THE DBS TEAM IN AUCKLAND. LEFT TO RIGHT: MR ARNOLD BOK, DR GREG FINUCANE, DR DAVID MCAULEY, DR BARRY SNOW, DR MARK SIMPSON. BACK ROW: LORRAINE MACDONALD, DR JAMIE MACNIVEN
can see the effect this is having to ensure the probes are in the right place. The person then has their head shaved and the metal frame is fitted. This has to be bolted to the person’s head so local anaesthetic is given to relieve any pain associated with this. Once the frame is fitted the person is taken for the CT scan that will help determine the location for the probes to be inserted. The frame on the person’s head is then clamped to the operating table so their head remains still. For the majority of the surgery, the patient needs to be awake. A light sedative is given to them before the surgery. The surgical team are behind the person so can’t be seen. The Movement Disorder Nurse sits with the person to reassure them and offer them sips of water. They can’t see what is happening but they can hear the surgeons and the brain electrical activity as it is being recorded over speakers.
The surgery is done in two stages, usually with around six weeks between operations. After the first stage of the surgery the person can often experience a transient improvement where their condition will be much improved. This is because when the wire is put into the brain a small amount of damage is done which causes the target area of the brain to swell. This swelling turns off the overactive nerve cells in the same way the electrical stimulation will once the patient’s DBS is switched on. The swelling only lasts for two to four weeks, so stage two of the surgery is not done until after the improvement caused by the swelling has gone away as the person needs to be back to their pre-surgery state.
When the probe is put in to the Sub Thalamic Nucleus it makes a characteristic noise. There is no pain associated with the insertion of the probe.
The person is admitted to hospital the day before surgery. They get an opportunity to see the High Dependency Unit where they will be after the surgery. They meet with the neurologist who once again goes through the procedure with them and discusses the risks involved in the surgery. A final medical check is carried out to ensure the person is in good health to undergo the operation.
The second stage of the operation is done under a general anaesthetic. In this surgery the Implanted Pulse Generator (IPG), which is similar to a heart pacemaker and generates the electrical stimulation to the brain, is placed under the skin on the chest. The wires that are attached to the probes and sit under the scalp are connected to a wire which runs behind the ear, down the neck and is connected to the IPG.
On the day of the surgery the person is off their Parkinson’s medication. They need to be off their medication to ensure that when the probes are tested during surgery the medical team
The day after surgery programming of the IPG begins. This programming usually takes around five days but can take up to two weeks. The person can leave hospital once the wounds
A stimulation current is run down the wire to ensure the probe is placed in the optimum location. With this completed the wire is held in place with a plastic clip and tucked under the scalp. The entire procedure is repeated on the other side of the brain and then everything is closed up. After a couple of nights in hospital to ensure everything is healing well, the person is able to return home.
FACT SHEET – CONTINUED FROM PREVIOUS PAGE
DBS uses mild electrical pulses to stimulate a precisely targeted area of the brain. It is thought this therapy works by ‘stunning’ the target area which blocks the abnormal nerve signals being transmitted by areas in the brain that are not functioning properly. have started to heal and just come in each day to have the programming done. Once the programming is completed and the person’s medication has been adjusted they can go home.
Follow up The first follow up appointment is six weeks after surgery where there may be further programming if needed. Another check is made a further six weeks later. After that the check ups occur every six months, with a big review done a year after the surgery. During this check the person temporarily comes off their medication to ensure the DBS is working correctly.
HOW DO THEY WORK OUT WHERE TO PUT THE PROBES? Usually the DBS probes are inserted into Sub Thalamic Nucleus. This is a small structure about the size of an almond located at the bottom of the brain. There is another target for DBS that is used less often which is the Globus Pallidus interna. This is targeted where the person has a risk of increased psychiatric problems as a result of the surgery. In the days or weeks prior to the surgery an MRI of the person’s head is done. An MRI shows the internal structure of the brain in great detail, but it isn’t a reliable form of measurement. On the day of surgery, and with the frame used during surgery bolted to the person’s head, a CT scan is taken. This is very accurate for measurements, but does not show the detail of the MRI scan. These two images are overlaid on a computer and accurate measurements in three planes are recorded in relation to the frame to ensure the exact spot is targeted when the probe is inserted.
the person awake, the Neurologist can run tests to confirm the probe is in the right place. The person can also let the Neurologist and Neurosurgeon know of any other changes they might be experiencing that may be the result of a haemorrhage, one of the risks of DBS.
HOW LONG DOES DBS LAST FOR? The original group of people who received DBS surgery are still getting good results after 10 or even 15 years. However, once Parkinson’s starts, it doesn’t stop progressing, and DBS does not change this or influence the rate of progression. In the long term, even with reprogramming of the DBS, a person’s dosage of medication may have to be increased to help control their symptoms of Parkinson’s.
WHAT ARE THE RISKS OF DBS? As with any surgery there are risks involved, including death, stroke or heart attack. Infections, should they occur, can be difficult to treat as the wires to the probes can allow infection to get into the brain. In some people, DBS surgery can induce apathy, anxiety or depression. Some of this can be reversible, but not always. Through careful selection of who will receive the operation, many of the risks can be minimised. The risk of a serious complications, e.g. stroke or death is about 1% - 2%. The Parkinsonian would like to thank Dr David McAuley and Lorraine Macdonald for their assistance with this factsheet.
HOW IS THE IMPLANTED PULSE GENERATOR POWERED? The IPG is a completely sealed unit with batteries inside it. These batteries last around five or six years. Although rechargeable units are available, in general people with Parkinson’s are implanted with non-rechargeable units and the IPG is replaced when the batteries are running out. The benefit of this is that they receive the latest IPG technology every time it is changed.
WHY DO YOU HAVE TO BE AWAKE FOR THE OPERATION? The person being operated on needs to be awake during the surgery as the probe is stimulated to see what effect it is having and to ensure it is in the optimum place. If for some reason the probe has missed the target the DBS won’t work. It may also stimulate an area that should not be stimulated, so by having
Safe Transfers Parkinson’s can impact on some people’s ability to sit, stand or rise from bed independently. This means that the people caring for them may need to help them do these things. However if not done properly, carers risk injuring themselves, particularly their backs, and the person the care for. For example injuries (strains and/or falls) to both parties often happen when a person is helped to stand from a seated position.
• Tighten abdominal muscles to support your spine.
• Keep your head raised, with your chin tucked in during the movement.
• Never lift – another person is always going to be over the maximum limit a person should lift (about 16 kg). If the person you care for needs to be lifted, you should use a hoist. • Know your limits – know your own capabilities, which may be much less than the maximum, and don’t exceed them. • Wear the right clothes – make sure your clothing and footwear are appropriate. Clothes should allow free movement and shoes should be non-slip, supportive and stable. • Do one thing at a time – don’t try to do two things at once – for instance, don’t try to adjust the person’s clothing during the transfer. 10
are helping) is, the greater the potential for harm.
The ACC Patient Handling Guidelines set out some principles that can help keep you safe while assisting another person to move.
BEFORE YOU MAKE A TRANSFER • Prepare the environment - position furniture correctly, check route and access ways are clear, and check the destination is available.
• Move smoothly throughout the technique and avoid fixed holds.
AFTER THE TASK • Stand up straight to correct your spinal alignment. Hold your chest open, shoulders back and abdominal muscles in so your lower body aligns properly with your upper body. Physiotherapists and occupational therapists can help you learn more about making safe transfers and preventing injury. They may also be able to advise you on equipment to make moving easier. If you have any concerns or would like more information talk to your Field Officer.
Source: ACC Patient handling guidelines – techniques for safer patient handling
• Prepare the person being moved - ensure their clothes and footwear are appropriate for the task, and they have any aids they need. Adjust their clothes, aids and position – for instance, encourage them to lean forward. • Explain the task and give precise instructions. Use a clear command e.g. “Ready, steady, stand”. This is clearer than counting and helps co-ordinate everyone in their moves.
DURING THE TRANSFER When it comes to the actual transfer there is a safe way to hold your body – • Stand in a stable position, your feet should be shoulder distance apart, with one leg slightly forward to help you balance. You may need to move your feet to maintain a stable posture. • Avoid twisting making sure your shoulders and hips stay in line with each other. • Bend your knees slightly, but maintain your natural spinal curve. Avoid stooping by bending slightly at the hips (bottom out). • Keep your elbows tucked in and avoid reaching – the further away from the body the load (person you
The Congress brings together physicians, scientists, allied health professionals and people living with Parkinson’s to share information on a wide range of topics from living with Parkinson’s to highly scientific research presentations. Early bird registrations close on 2 July. Congratulations to Andy McDowell whose entry for the video competition has made the top 12 shortlist, and to Andrew Johnson who has had an abstract accepted. Further information about the congress is available at worldpdcongress.org
GET GOING FOR PARKINSON’S
Haircut raises $3,500 for Parkinson’s NZ Ashley Switzer always wanted dreadlocks. So as soon as his hair was long enough after he left school he had them put in. That was nine years ago. Lately he began to feel that it was time for a change. But he didn’t want to just cut them off. He wanted to do something significant and more meaningful. His grandfather was recently diagnosed with Parkinson’s. For Ashley “after growing up with Granddad being such an active and strong figure, seeing him start to slow down is heart-breaking.” That gave him his reason to cut of his dreads. He decided to ask people to sponsor him to do it and help him raise some money for Parkinson’s New Zealand.
“I was surprised at how many people I talked to told me about their aunts, granddads or other people they knew who also had Parkinson’s. It was really good to be able to increase awareness of Parkinson’s and what a terrible condition it is. And with the help of a lot of awesome people I also managed to raise nearly $3,500 for a cause I feel very strongly about.”
The initial plan was to set a fundraising target of $1,500 but a friend convinced him to increase it. Ashley manages a Wellington bar and has a wide social circle so they thought he could reach quite a few people. He signed up to FundraiseOnline with a target of $2,500. “I thought that was ambitious and I’d struggle to reach it, but I was blown away by the response.” Ashley received an immediate flood of donations and support and had reached his target before he had even confirmed the date for his haircut.
“After growing up with Granddad being such an active and strong figure, seeing him start to slow down is heart-breaking.” The cut-off date was 12 May. One of his customers has a barber shop and lent it to him for the occasion and a few friends and family gathered to watch the event. Ashley “found it a bit nervewracking at the start.” As the dreads were cut off they were placed on his lap forming a bigger and bigger pile. But there was no going back, and eventually they were all off and in a black rubbish bag. Now that it is over Ashley is enjoying having short hair. He has been getting varied reactions around town. Mostly good but his hair has been one of his most identifying features for years, so a few people have just not recognised him.
If you or someone you know would like to raise funds for Parkinson’s New Zealand, please contact us on 04 472 2796 or 0800 473 4636 or email@example.com.
Nevertheless he found the whole experience really rewarding, especially the conversations he had with people about Parkinson’s.
The possibility of events you could undertake are endless and we are always here to help you with your fundraising efforts.
NEWS FROM AROUND THE COUNTRY
HAWKE’S BAY COMMENDATIONS
NORTHLAND VIEW FROM REOTAHI TRACK
LYNDA MCGUIRE AND MANDY EVANS RECEIVE CHEQUE FROM Z GARAGE’S LOCAL AREA MANAGER
“She got everyone involved as she sang gospel music and had the rest of the group singing a three-part backing harmony.”
The Northland Walking Group had a beautiful day for their outing to the Reotahi Coastal Walkway in late February. The track follows a stunning piece of coastline within the Whangarei Harbour with views over to the Marsden Point port and oil refinery. Some of this scenery was captured by member and keen photographer Mrs Sue Vercoe.
In mid-February 13 members of the Marlborough division ventured to Brayshaw Heritage Park to take a trip on the Blenheim Riverside Railway. The two foot gauge rail runs from the Brayshaw Heritage Park Station to Riverside Park in downtown Blenheim. Despite having cooler weather on the day everyone enjoyed the one hour round trip.
On World Parkinson’s Day (11 April) Hawke’s Bay ran a seminar. Speakers included Tara Martin talking about physiotherapy programme LSVT-BIG, Daniel Sullivan from Mylan New Zealand on the drugs available in New Zealand for Parkinson’s and Tina Heesterman from NASC agency Options Hawke’s Bay. The seminar was most successful with nearly 90 people attending including members and carers, rest home nursing and management staff, physiotherapists and GPs. An audio recording was made of the seminar and this is available on CD by contacting the division office on (06) 844 9135.
The Otago division also marked World Parkinson’s Day. They held a music and voice seminar on 12 April which was attended by about 50 people. The highlight was voice coach Lisa Tui Jonathan. She got everyone involved as she sang gospel music and had the rest of the group singing a three-part backing harmony. Lisa said that singing helps people rediscover the ‘power and flexibility’ of their voices. A short video clip of the performance can be viewed on the Parkinson’s New Zealand YouTube channel www.youtube. com/user/ParkinsonsNewZealand. Before the singing, clinical neuropsychologist Dr Glenda Wallace played the group gospel music she had recorded on a holiday in New Orleans.
Hawke’s Bay also took the opportunity present certificates to their members who received Special Commendations in the 2013 Parkinson’s New Zealand Recognition Awards. Robin Prichard received a commendation in the Andrew Dunn Volunteer Award, John Harris – Sir Peter Snell Keep Moving Award and Winston Watson – Sir David Levene Volunteer Award.
KAPITI HOROWHENUA The Kapiti Horowhenua division was one of the charities chosen to benefit for the Z service stations ‘Good in the Hood’ scheme that ran during March. They were supported by the Z Garage on the Kapiti Road, Paraparaumu. Individuals who made a purchase at the garage were entitled to vote for one of four local charities, thus determining how a $4,000 donation from Z Garage would be distributed. They received $590. Z Redwood in Blenheim also supported Parkinson’s with a donation of $977 to the Marlborough division.
THANK YOU Iris & Eric Nankivell Charitable Trust
David Levene Foundation
Published on Jun 1, 2013