ISSN 1177-0635SEPTEMBER 2012 VOL. 15 – NO.1

THE PARKINSONIAN

New Physiotherapy Approach for Parkinson’s

Conventionally, physiotherapy for Parkinson’s has aimed to improve flexibility, strength, and balance, so things like walking, getting up from a chair, or turning over in bed, become easier. This approach breaks down each action into smaller discrete parts but requires patients remember multiple instructions for each one. What was once automatic becomes a feat of memory, concentration, and will.

The new approach is based on the Lee Silverman Voice Treatment (LSVT) and in the same way that system incorporates sensory awareness training to help people with Parkinson’s recognise that their voice is too soft, LSVT-BIG teaches patients to recognise how much physical effort is required to get something done.

In Parkinson’s, the body’s proprioreception system –the feedback system that returns information to the brain when the body moves (or is moved) and allows subsequent adjustments to be made – goes awry, and abnormal movements feel normal and normal movements feel abnormal.

“The LSVT-BIG programme aims to recalibrate the system,” says On-the-Go physiotherapist Tara Martin.

The programme has three components: a general set of prescriptive exercises, a set of functional exercises specifically designed for each

patient, and a walking programme aimed at improving gait and reducing falls.

The general exercises address the most common problems people with Parkinson’s have and are the foundation of the programme. The five routines demand coordination and balance and involve every part of the body. The exercises move patients from the closed, hunched position people with Parkinson’s typically adopt and open them up into a more extended posture.

One of the problems with Parkinson’s, Tara says, is its impact on the sensory system. It’s not that people can’t make a movement or that they are too weak, it’s that they don’t fully feel their movements or posture.

“They may not necessarily feel small or cramped or hunched. They just know they can’t do things and they don’t understand why because they don’t feel the smallness of their movement.

“LSVT-BIG allows people to experience the feeling of bigness, of over-exaggeration... like being an actor on stage.”

Once this recognition is achieved through repetition after repetition of the foundation exercises, components of these base exercises are used to develop a set of functional exercises aimed at addressing the specific goals of each patient. Goal-setting is a key part of the programme Tara says, as each patient has different challenges.

The first patient Tara treated with the programme was 71-year-old Jagjit (Jimmy) Dillon, who was first diagnosed with Parkinson’s in 2008. Mr Dillon wanted to walk indoors without shuffling; sit on the floor and be able to get up again; to improve the fine motor movements of his right hand and fingers, which were affected by tremor; and to be able to walk uphill more easily, with less shortness of breath

Listening is a vital part of establishing the functional exercises, Tara says: “A key part [of establishing goals] is finding out what the real problems are. Sometimes therapists don’t spend enough time

TITLE ONE

Last year Christchurch physiotherapy practice On-the-Go Physio began to offer a new movement training programme--LSVT-BIG—specifically designed for people with Parkinson’s. The programme requires participants to focus on one goal and one goal only: to think BIG and make the biggest movements with the most effort they can muster.

CAPTION GOES HERE

THE PARKINSONIAN

2

Tena Koutou KatoaWelcome to the first issue of The Parkinsonian for 2012. We are starting off BIG this year! Tara Martin, the physiotherapist in our lead story is speaking at the UPBEAT Weekend in Auckland in March and I am even more interested to hear her after reading the story. I am pleased that we could also bring you an update on Dr Megan McAuliffe’s communications research. As part of our support for Parkinson’s research, we try to help researchers find study participants, often by publishing invitations in the magazine. So it is good to hear about what happened next.

I know you all agree that supporting research and education is a vital part of Parkinson’s New Zealand’s work. I hope you will consider making a donation to help us do more this year.

Remember that donations to registered charities (which we are) are tax deductible. That means that for any gift you make before the tax year ends on 31 March, you can claim a tax credit amounting to 33.3% of the amount of the gift. Just ensure that you include your name and address so we can send you a receipt.

On a personal note, I’d like to thank everyone for their congratulations on the birth of my daughter. My family and I appreciate your kind thoughts and words.

finding out what the real issues are. A lot of the time people with Parkinson’s will say ‘I know what the problems are, I just don’t know how to fix them.’ That’s a big part of it, listening. Really listening. “Everyone’s Parkinson’s manifests itself in different ways.” On-the Go Physio works with patients in their own homes, an approach Tara believes makes a lot of sense. “If we want to work on a problem like getting out of bed, we can work with the patient’s bed. If we want to work at sitting at the dining table and pulling the chair in, we do it with that table and that chair.” The third part of LSVT-BIG is LSVT-BIG Walking. present with some sort of walking problem, Tara says.

“What we are learning about Parkinson’s is that broadly, people with the condition fall into two groups. Some people have a tremor

dominance but can go for a long time without having any real problems with their gait and walking. Others have more problems with gait apraxias from an early stage. They typically have a shuffling gait but may not necessarily have a tremor.”

Gait problems involve issues of amplitude and can respond well to the LSVT-BIG approach. In LSVT-BIG Walking, the patient is asked to concentrate on taking big steps, exaggerating their arm swing, and keeping a big upright posture.

If you say ‘show me some really gigantic big walking’, most of the time the walking goes from a Parkinson’s shuffle to normal.

“Very rarely does it go to a Ministry of Silly Walks type gait. A patient may feel silly because (to them) it feels wrong but it isn’t.”

A WORD FROM THE CHIEF EXECUTIVE

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 Follow us on Facebook www.facebook.com/parkinsonsnz & Twitter @Parkinsonsnz

Deirdre O’Sullivan

THE PARKINSON’S AUSTRALIA NATIONAL CONFERENCE

BRISBANE >>13TH & 14TH JULY 2012Topics to be covered include: advances in surgical, drug, and exercise treatments; depression and anxiety in Parkinson’s; nutrition and Parkinson’s; the Australian Parkinson’s Nurse Specialist Service; and speech therapy.

The keynote speakers are neurologist Professor Barry Snow and Professor Tipu Aziz, Professor of Neurosurgery at the University of Oxford.

CONTINUED FROM PREVIOUS PAGE

SEPTEMBER 2012

Telling people you have Parkinson’s

DO YOU HAVE TO TELL EVERYONE?Many people feel the need to announce their ‘situation’ or ‘news’ to everyone around them when they are first diagnosed. While feeling that everyone should know is a normal response, it’s not always best. Some people may want to hide the news from everyone. This is also a normal reaction but adjusting to the news is something that is ultimately best done with the support of others. You may find that it is best to only tell those who you know will offer positive support, such as immediate family and very close friends.

Friendships can sometimes be difficult enough to maintain when you are healthy and in good spirits. But it is even more difficult when you do not feel 100% - when you are tired or stressed, your mood is down, or you are have anxieties about your condition, your future and that of your family.

It’s important to remember you have control. While you can’t control how people react to your Parkinson’s, you can control when and how you tell them. You can choose to be proactive and positive in your approach to others.

While it may be hard, actually saying “I have Parkinson’s” can be a good thing. Saying it aloud may release emotions that you may have been suppressing. Telling someone makes the condition more real; it is validating. Although it may be difficult, it is very therapeutic, because you are admitting you are living with an illness. This is the first step in coping.

Don’t apologise for your disorder. It’s not your fault. It happened, and now all of those around you need to come to terms with it. If certain people have difficulty accepting it, remind yourself that this is their issue for them to contend with, not yours.

Stress that while things may have changed, fundamentally you are the same person you always have been and don’t require special pitying voices or deep, meaningful looks and embraces. Your essence is the same. You are not defined by your diagnosis – it is simply a part of your life that you are adjusting to living with.

Let your friends know that what you need is empathy not sympathy. What you need is someone who can put themselves in your place and see what your needs are. Often, you may simply need someone to listen to you, not someone to go around fixing anything. What you don’t need is someone who is just going to add to your burden of gloom.

For some people, crying together may be a very bonding and supportive activity, enabling a person to feel less lonely in their grief and shock and sorrow; but for others, dealing with other people’s tears may be burdensome and one of the last things they feel like doing.

Of course some people may react, at least initially, with grief, anger and disappointment. Accept that. These reactive stages, however, should not go on indefinitely. Adults should have the grace not to burden you with unnecessary outbursts of anger or denial. Being surrounded by people whose anxieties and fears are obvious and excessive will not allow you to cope in a healthful manner. Parkinson’s is now a fact of your life and it must be accepted. How you are coping is more important, not how they are dealing with your condition.

Talk. It is amazing how effective talking can be. Sharing feelings and fears can resolve a million problems. Sharing your feelings with one another will defuse any resentment that tends to build in reaction to any pain and stress you both feel.

People may automatically think the worst. You can help them understand by educating them about your condition. Parkinson’s New Zealand has leaflets about the condition which you may want to give them to read. The more at ease and knowledgeable they are, the more effective support they can give to you. They need to learn that you are still you and that the relationship can still go on. Give your friends clear facts about Parkinson’s. Tell them that you want them to help you maintain your independence for as long as possible, which will likely mean many years after you received the diagnosis. Tell them that as time passes you will likely face greater challenges from the condition but that you wish to maintain the relationship.

In short, people around you need to come to terms with your Parkinson’s and its implications for the relationship. Once they do so, the relationship will grow and may even nourish both of you just as it always had done.

WORKPLACE DISCLOSURE OR NON-DISCLOSURE - THAT IS THE QUESTIONParkinson’s is different for each person and it may never progress to the point where you have to consider giving up work prematurely. However, this may become reality for some. For employees in this situation who need to work or want to work, the question of how best to hang on as long as possible is critical.

Don’t be in a rush to make major decisions. Many of us identify closely with our jobs and careers and giving them up can be painful. Besides concerns about one’s status and identity, deciding to leave work involves decisions about one’s financial future. And that of the family. Explore your options. For example, is going part-time an option if full time work becomes too difficult?

At some point though, you are going to have to disclose your condition. Exactly when to do this is a tricky question. Timing, as they say, is everything: deciding when to tell your employer that

FACT SHEET

You have recently been diagnosed with Parkinson’s. How do you tell your friends and family? It is not an easy task. Not only do you have to deal with the new emotions you are feeling, but you also have to cope with the reactions of the people you are telling. This can result in added stress, which can increase your own fears and anxiety.

3

THE PARKINSONIAN

4

Title here

SUB TITLEMany people feel the need to announce their ‘situation’ or ‘news’ to everyone around them when they are first diagnosed. While feeling that everyone should know is a normal response, it’s not always best. Some people may want to hide the news from everyone. This is also a normal reaction but adjusting to the news is something that is ultimately best done with the support of others. You may find that it is best to only tell those who you know will offer positive support, such as immediate family and very close friends.

Friendships can sometimes be difficult enough to maintain when you are healthy and in good spirits. But it is even more difficult when you do not feel 100% - when you are tired or stressed, your mood is down, or you are have anxieties about your condition, your future and that of your family.

It’s important to remember you have control. While you can’t control how people react to your Parkinson’s, you can control when and how you tell them. You can choose to be proactive and positive in your approach to others.

While it may be hard, actually saying “I have Parkinson’s” can be a good thing. Saying it aloud may release emotions that you may have been suppressing. Telling someone makes the condition more real; it is validating. Although it may be difficult, it is very therapeutic, because you are admitting you are living with an illness. This is the first step in coping.

Don’t apologise for your disorder. It’s not your fault. It happened, and now all of those around you need to come to terms with it. If certain people have difficulty accepting it, remind yourself that this is their issue for them to contend with, not yours.

Stress that while things may have changed, fundamentally you are the same person you always have been and don’t require special pitying voices or deep, meaningful looks and embraces. Your essence is the same. You are not defined by your diagnosis – it is simply a part of your life that you are adjusting to living with.

Let your friends know that what you need is empathy not sympathy. What you need is someone who can put themselves in your place and see what your needs are. Often, you may simply need someone to listen to you, not someone to go around fixing anything. What you don’t need is someone who is just going to add to your burden of gloom.

For some people, crying together may be a very bonding and supportive activity, enabling a person to feel less lonely in their grief and shock and sorrow; but for others, dealing with other people’s tears may be burdensome and one of the last things they feel like doing.

Of course some people may react, at least initially, with grief, anger and disappointment. Accept that. These reactive stages, however, should not go on indefinitely. Adults should have the grace not to burden you with unnecessary outbursts of anger or denial. Being surrounded by people whose anxieties and fears are obvious and excessive will not allow you to cope in a healthful manner. Parkinson’s is now a fact of your life and it must be accepted. How you are coping is more important, not how they are dealing with your condition.

Talk. It is amazing how effective talking can be. Sharing feelings and fears can resolve a million problems. Sharing your feelings with one another will defuse any resentment that tends to build in reaction to any pain and stress you both feel.

People may automatically think the worst. You can help them understand by educating them about your condition. Parkinson’s New Zealand has leaflets about the condition which you may want to give them to read. The more at ease and knowledgeable they are, the more effective support they can give to you. They need to learn that you are still you and that the relationship can still go on. Give your friends clear facts about Parkinson’s. Tell them that you want them to help you maintain your independence for as long as possible, which will likely mean many years after you received the diagnosis.

In short, people around you need to come to terms with your Parkinson’s and its implications for the relationship. Once they do so, the relationship will grow and may even nourish both of you just as it always had done.

SUB TITLEParkinson’s is different for each person and it may never progress to the point where you have to consider giving up work prematurely. However, this may become reality for some. For employees in this situation who need to work or want to work, the question of how best to hang on as long as possible is critical.

Don’t be in a rush to make major decisions. Many of us identify closely with our jobs and careers and giving them up can be painful. Besides concerns about one’s status and identity, deciding to leave work involves decisions about one’s financial future. And that of the family. Explore your options. For example, is going part-time an option if full time work becomes too difficult?

At some point though, you are going to have to disclose your condition. Exactly when to do this is a tricky question. Timing, as they say, is everything: deciding when to tell your employer that you have Parkinson’s is a very personal decision and depends very much on circumstances.

NEWS & RESEARCH

Lead in. How do you tell your friends and family? It is not an easy task. Not only do you have to deal with the new emotions you are feeling, but you also have to cope with the reactions of the people you are telling. This can result in added stress, which can increase your own fears and anxiety.

SEPTEMBER 2012

5

Title here“It’s important to remember you have control. While you can’t control how people react to your Parkinson’s, you can control when & how you tell them”

On one hand, you may fear disclosing your health status will be bad for your career. You may be concerned your employer will favour healthy workers over you. You may wonder how willing your employer will be to make adjustments in job duties or deadlines.

You may also be afraid disclosure will mean your co-workers and supervisors perceive you as less able to do your job well. (Or you may fear their pity.)

On the other hand, non-disclosure may mean you lose out on any protection, accommodations, and time off provided under the law. Non disclosure may mean your co-workers become resentful at having to make allowances for you without understanding the reason or it may unfairly rob them of them of the opportunity to understand the situation and make some helpful changes.

In some circumstances you are obliged to disclose your condition. The Employment Relations Act (2000) requires that employers and employees deal with each other in good faith, which means dealing with each other honestly and fairly and openly. If your job poses any hazards, openness and honesty are crucial, not only for your own wellbeing but that of your co-workers. Your employer may need to know of your condition to help him or her fulfil their health and safety obligations toward you as an employee.

Under the Human Rights Act, it’s unlawful to discriminate on the grounds of a disability in employment.

Until you decide one way or another, perhaps the best advice to follow is to be as public as you need to be and as private as you want to be.

But if and when you do decide to disclose your condition, approach the conversation with the boss with the same level of professionalism as you would with any other work-related matter. Bide your time until you know what you want and can talk specifics. Do you need a change in role? Shorter hours? To work part-time or work from home? Present your boss with solutions not problems. Show that you’ve put some serious thought into maintaining the quality of your input and minimising disruption to the work place. Research what support is available for both you and your employer.

One example of this support is Workbridge (workbridge.co.nz). Workbridge is a professional employment service for people with all types of disability. Besides matching jobseekers and employers, Workbridge also administers three training and employment support funds available to disabled people on behalf of the Ministry of Social Development. This funding is available to help with any additional costs directly relating to a person’s disability

when entering or retaining a job, entering training, or commencing self employment.

Explain what’s going on and provide reassurances that the condition is manageable. Parkinson’s New Zealand field officers may advocate on your behalf. They are well qualified to explain what Parkinson’s is and what it means in employment terms.

Discuss privacy issues if you and your employer agree to formally let other people know about your disability.

You may not be able to control the course of your Parkinson’s, but you can control the direction you take and the choices you make regarding your condition in the workplace.

SUB TITLEIt is never easy to tell children bad news. Most adults have a natural instinct to protect the feelings of children and often do so by omitting information. Many psychologists agree that this hurts them more in the long run, so being straight forward and honest is best.

It’s important to let your children or grandchildren know that you have Parkinson’s and it’s important that you be honest about what that means. Assume they don’t know what it is and explain the physical process of how it develops and what can be done about it.

On the other hand, non-disclosure may mean you lose out on any having to make allowances for you without understanding the reason or it may unfairly rob them of them of the opportunity to the Human Rights Act, it’s unlawful to discriminate on the grounds of a disability in employment.

THE PARKINSON’S AUSTRALIA NATIONAL CONFERENCE

BRISBANE >>13TH & 14TH JULY 2012Topics to be covered include: advances in surgical, drug, and exercise treatments; depression and anxiety in Parkinson’s; nutrition and Parkinson’s; the Australian Parkinson’s Nurse Specialist Service; and speech therapy.

The keynote speakers are neurologist Professor Barry Snow and Professor Tipu Aziz, Professor of Neurosurgery at the University of Oxford.

THE PARKINSONIAN

6

Communication difficulties for people with Parkinson’s are reported as being one of the most socially isolating aspects of the condition. For up to 90% of people with the condition, speech difficulties prevent full participation in family, social, and work activities or make participation onerous.

The first study investigated how communication difficulties associated with Parkinson’s affects people’s ability to participate in their everyday lives –how they communicate with family and friends and speak with their doctor for example. The research aimed to clearly identify the problems experienced and develop a tool to measure the extent of these difficulties.

Associate Professor Megan McAuliffe from the Department of Communication Disorders at the University of Canterbury is working in collaboration with Professor Tim Anderson (Van der Veer Institute of Parkinson’s and Brain Research) and colleagues in the USA on the project.

In December 2010, Parkinson’s New Zealand issued a call for people with Parkinson’s and speech difficulties to participate in the project and complete questionnaires. The response was tremendous Associate Professor McAuliffe says: “without the assistance of Parkinson’s New Zealand, the project would not have reached over 200 people with communication difficulties and Parkinson’s from across New Zealand.

“Parkinson’s New Zealand was instrumental in ensuring that we were able to promote the research to those with Parkinson’s and also followed through with their field officers to ensure that appropriate people with Parkinson’s might be made aware of the research and given the opportunity to participate.”

The research team is currently analysing the responses and will share the findings with the community later this year.

In the second study, the first of its type internationally, Associate Professor McAuliffe and Professor Anderson are looking at speech rehabilitation strategies for people with Parkinson’s. This three-year study examines how older adults comprehend the disordered speech associated with Parkinson’s. Until now, listener-based rehabilitation research has used young people, such a university students, to examine how adults comprehend disordered speech. However, the partners of individuals with speech problems are usually much older than these test subjects and may be affected by age-related hearing loss and slowed cognitive processing.

“We want to determine which rehabilitation strategies provide the greatest benefit to listeners. It is all very well for a speech therapist like me to tell the person to talk six decibels louder but what effect does that have for the communication partner, and more particularly the older communication partner? That’s what we want to find out.”

Participants with Parkinson’s were recorded (audio and video) speaking and then asked to carry out tasks simulating common speech strategies, such as speaking twice as slowly or twice as loudly.

These speech samples were replayed to older and younger listeners who were asked to transcribe what they had heard. The results provide insights into whether conventional strategies facilitate better communication or not.

Communication studies

RESEARCH UPDATE

Parkinson’s New Zealand support was instrumental in the completion of two ground-breaking studies at the University of Canterbury into the communication difficulties faced by people with Parkinson’s.

CALL TO ACTION BOX TITLE

For more information about our Getting Going for Parkinson’s please call 0800 473 4636 or email us at info@parkinsons.org.nz or.

SEPTEMBER 2012

7

NORTHLANDThe Division organised a ‘doughraisers’ event with Domino’s Pizza. This is a scheme run by the company where a local store will raise funds through the sale of pizza products on a particular day for a chosen charity or community group. Details may vary between stores but usually once a store has agreed to run a doughraiser, one day of the week, usually a Monday or a Wednesday night, is chosen as the doughraiser day and a pre-determined amount, usually $1, from every pizza sold goes directly to the chosen group or organisation.

Northland’s doughraiser evening raised $156. To help boost sales, members Bruce and Jeanne Thompson held a pizza dinner for their family and friends.

WAIRARAPA Parkinson’s Wairarapa held a well attended Christmas lunch at the Copthorne Solway Park, 28th November. Field officer Sue Syben and Chairman Mike Lynch made a lovely fairy and Santa as they distributed the gift exchange.

TARANAKIIn late November Taranaki held a fishing weekend for its “young Parkinsonians”. Fifteen people including partners and a field officer headed to Omori on Lake Taupo. The Saturday morning produced ideal fishing conditions and three trout found their way into the smoking chamber and that evening’s dinner. The rest of the weekend was spent relaxing.

SOUTH CANTERBURYSouth Canterbury branch had a very successful Christmas afternoon in December. Rather than going out for the usual lunch they had an afternoon function at which the Waimataitai School brass band entertained. Everyone joined in to sing Christmas carols after which Santa handed out gifts and there was an afternoon tea.

For the January meeting members went to Temuka to see the alpacas run by members Neil and Anne (also division Treasurer).

WEST COASTParkinson’s West Coast had a full house at the office for their Christmas morning tea on 3rd December. The Mayor and Patron of the Society Tony Kokshoorn joined them for a cuppa prior to opening the Greymouth Christmas Parade. They also held a bake sale and raffle out on the street as part of the Christmas Carnival. A great day enjoyed by all!

OTAGOParkinson’s Otago folk visited member Kieran Hurring’s garden at the start of February. Kieran is a keen gardener and each season has a different show of colour in his large property. The undulating walk was a little difficult for some members so they were able to view the prolific vegetable and flower garden from the large balcony around the house. The majority of plants Kieran has grown from seed or cuttings. February was a great month to view the dahlias and hydrangeas in particular.

NEWS FROM AROUND THE COUNTRY

CAPTION GOES HERE

CAPTION GOES HERE

CAPTION GOES HERE

CAPTION GOES HERE

CAPTION GOES HERE

CAPTION GOES HERE