ISSUE 1, 2014 Featuring Research: Improving … 1, 2014 Featuring Research: Improving outcomes with DBS, Hydrotherapy for Parkinson’s and A Walk in the Park 2014 A MAGAZINE FOR …

ISSUE 1, 2014

Featuring Research: Improving outcomes with DBS, Hydrotherapy for Parkinson’s and A Walk in the Park 2014

A MAGAZINE FOR THE PARKINSON'S COMMUNITY

2 www.parkinsonsvic.org.au

CEO and President’s Message

… as you may be able to tell from your new-look member magazine, InMotion!

After many years, the time had come for the national network to update our look and voice to ensure the brand of all Parkinson’s associations around Australia reflects our bold mission and strong community. The national network worked together to develop a modern, bright and clean look. At Parkinson’s Victoria we couldn’t be more excited to see it in action.

The update of the Parkinson's Victoria magazine’s style is part of this national rebranding project.

The new magazine InMotion will feature the same relevant and expert information as always, but in a much more stylish and easy-to-read package. Soon, you’ll see the new look in action on our fresh and improved website, which is set to launch in late November. We’ll be updating other materials to match the new brand in the coming months.

To go with our new style, we also have a new tagline, In This Together. This statement reflects the strength and unity we see every day in the Parkinson’s community, as well as our belief that Parkinson’s is a national health issue and needs to be addressed as such.

But our fresh face is just the start. Parkinson’s Victoria is making changes internally, building our resources to meet the growing needs of the community. We are creating a stronger multidisciplinary health team, as well as adding an occupational therapist and nursing supports. Additionally, we hope to have a speech pathologist as part of the team in the next six months.

We have worked on increasing fundraising and community awareness so that we can build capacity, deliver more services and supports, and engage broader audiences… and it’s worked.

The Living Well seminar was our biggest ever metro education event, with more than 200 health professionals and consumers in attendance. Similarly, the Albury-Wodonga seminar attracted 350 health professionals and consumers from Victoria and NSW, making it our most successful regional event. This year’s A Walk in the Park was a monster success, raising a record-breaking $240,000 and attracting over 3,400 participants at Walks across the state. In early October, Socceroo Mark Milligan hosted a benefit dinner for Parkinson’s Victoria at the Grand Hyatt, raising over $40,000.

With our profile growing in the community, we are also working hard to push Parkinson’s to the top of the political agenda.

Damien has been working with Parkinson’s Australia to develop a long-term advocacy campaign to ensure that Parkinson’s is recognised by the Federal Government as a national priority. On a local level, active community members in Shepparton and Mildura – with the assistance of Parkinson’s Victoria – have been applying pressure to their local members to improve access to Parkinson’s nurses in their areas.

As the Board President and CEO of Parkinson’s Victoria, what shows us that the community is making real headway is when we arrive together at an event like A Walk in the Park and see thousands of participants and feel the energy in the community.

Positive change is happening all around us. The Parkinson’s community is making it happen. We thank you for your support of our organisation in 2014, and look forward to big things in 2015.

We wish you and your family a happy and safe festive season.

Emma Collin CEO Parkinson’s Victoria

Damien Farrell President Parkinson’s Victoria Board

Parkinson's Victoria President Damien Farrell with CEO Emma Collin

Cover Image: Jill Goss and her 6-month old granddaughter, Alice

Change is afoot at Parkinson’s Victoria

3www.parkinsonsvic.org.au

Two new fact sheets

The Health Information Team is pleased to announce that two new fact sheets have been developed as part of a collaboration between Parkinson’s Victoria and the Continence Foundation of Australia.

Difficulties with constipation and bladder are experienced by many people living with Parkinson’s. Using the combined expertise of our two organisations, a fact sheet on constipation has been reviewed and a new fact sheet on bladder and Parkinson’s has been developed and adopted nationally.

Copies of the fact sheets can be downloaded from www.parkinsonsvic.org.au or call (03) 9581 8700 for a copy.

Parkinson’s Victoria has a fabulous selection of Christmas cards and gifts available for sale. Every gift ordered will make a difference to the lives of people with Parkinson’s in Victoria.

See the Christmas Catalogue 2014 and order form inserted within this edition and online for full details.

Orders can be made by returning the order form to Parkinson's Victoria or calling us on (03) 9581 8700.

Christmas orders must be placed by Friday 12 December.

News and Highlights

Celebrate the festive season and make a difference

Parkinson’s benefit dinner

Socceroo Mark Milligan with grandmother, Maria

Mark Milligan, Socceroo team member and Captain of Melbourne Victory Football Club, together with his wife Rhia, brought together 160 guests to honour Mark’s grandfather, Mont and his wife Maria, on 3 October at the Grand Hyatt for a very memorable Parkinson’s Benefit Dinner.

“There was an amazing energy in the room which was purely a reflection of the positive and enthusiastic attitudes of our guests. People rocked up, frocked up and coughed up to ensure we raised as much as possible for Parkinson's Victoria”, said Rhia in a big thank you to guests.

Major sponsor, TAC and table sponsors including Melbourne Victory, Premier Fruits, Checkpoint Building Surveyors, Community

Training Initiatives and Oliana Foods showed their support for Parkinson’s by generously contributing to the raffle, as well as the evening's auctions.

Mark’s grandmother Maria shared her story which gave guests an insight into how Parkinson's has affected her husband, Mont.

The event raised over $40,000 and will help Parkinson’s Victoria play a lead role in the development of national information fact sheets. The funds will also help in the delivery of national education seminars and conferences and provide support for Australian research to continue to improve life outcomes for people living with Parkinson’s.


For Carers

Scheduling breaks from your caregiving responsibilities isn’t being selfish. Your loved one needs you to be at your best so you can consistently provide high-quality care at home. BrainLink can help you make this time with our supported getaway program. The best part of attending a BrainLink getaway is that respite can be arranged if required. If you have not used respite before, we are happy to discuss your options with you.

Our motto is “You deserve to be pampered”, with a few days of sleep-ins in your own private room, while enjoying gourmet meals, beautiful surroundings, massages, good company, tears and laughter.

When you lead a stressful and busy life, caring for yourself becomes a high priority. BrainLink's wellness sessions for carers focus on breathing, stretching, self-massage and basic yoga poses, giving you a greater sense of health and wellbeing. With an expert instructor on-hand to lead these empowering sessions, you will come out feeling revitalised and at ease.

BrainLink has experienced staff who can provide you with information, resources and suggestions about your situation either over the phone, email or face-to-face.

The information line is open from Monday to Friday, 9am to 5pm. Call 1800 677 579, email [email protected] or visit www.brainlink.org.au for more information.

Parkinson’s Victoria members can directly contact Karen Jorgensen, a Client Services Manager with BrainLink, on 9845 2956 or via email at [email protected]

Taking a break: supported getaways

Relaxation and Wellness Days BrainLink Carer Supports

BrainLink Services is dedicated to improving the quality of life of Victorians affected by acquired disorders of the brain.

BrainLink’s first priority is to respond to the immediate needs of the families and friends of those who are living with an acquired brain disorder. These conditions include stroke, head injury, brain tumours and progressive neurological diseases such as Multiple Sclerosis, Parkinson’s, Muscular Dystrophy, Motor Neurone disease and Huntington’s disease.

The services BrainLink offers include:

• A first point of contact for families after diagnosis

• Education support programs for carers and families

• Innovative and flexible respite opportunities

• Specialised case management for individuals with severe brain disorders

• Comprehensive information and resources

• A referral service to assist the community in navigating the disability services sector

Caring is a critical job that can often be difficult and lonely. Carers need specialized knowledge, skills and assistance. Our programs provide a chance for you to meet with others in similar situations and to develop support networks so that you don’t have to cope alone.

BrainLink’s education support programs feature a wide range of service providers and health care professionals who provide:

• Self-care strategies for carers

• Strategies for coping with physical or behaviour changes

• A road map of the service sector and how to navigate the maze

• Strategies for coping with the grief and loss that comes from changed relationships


Our Community

PSP t-shirts for sale

Vale Ruth Harrop

A Walk in the Park moves throughout Victoria

It wasn’t just Melbourne walking in August to raise awareness of Parkinson’s.

On Sunday 24 August, scooters, prams and dogs made an appearance as almost 100 people gathered in Mildura to raise awareness of Parkinson’s. Dressed in red, with some carrying balloons and banners, the annual Mildura Parkinson’s Support Group Slow Walk set off from Henderson Park.

Walk organiser Cheryl Barnes, who was diagnosed with Parkinson’s nine years ago, said the Walk has received overwhelming support since 2009. For her the day is about raising awareness, “Parkinson’s is an issue that deserves more community attention, so people don’t feel they are suffering alone.”

Warrnambool residents also had a chance to show their support on 31 August, by joining a Walk on the Lady Bay foreshore. Andrew Suggett, Warrnambool organiser and Parkinson’s Victoria Board Vice President, welcomed support from service

clubs, sports groups as well as friends and families.

Warrnambool City Mayor Michael Neoh led the walk from the Harbour Pavilion, with about 300 locals joining him in a fantastic show of support.

For the first time, residents of Buckland House in Mansfield took advantage of the sunshine to walk to the Botanic Park and back again. Dr Geoffrey Gartside, who is living with atypical Parkinson’s and is a resident of the nursing home, organised some 30 residents, carers and two dogs to join him on the walk to help raise awareness of Parkinson’s and movement disorders.

Local support groups in Shepparton and Mt Martha are scheduled to complete their Walks by the end of October.

The PSP Support Group have their beautifully designed t-shirts available for sale at $15 each. Adult small, medium and large sizes are available, and can be purchased from Parkinson’s Victoria.

Call (03) 9581 8700 for more information.

It is with sadness that we announce Ruth Harrop passed away on Tuesday 2 September 2014.

Ruth, who was the President of the Camberwell Support Group for 10 years and received a Service Recognition Award for her contributions in 2012, passed peacefully with her family beside her. The Cabrini Nursing Home provided Ruth with excellent care, and supported her family during the last weeks of Ruth’s life.

Ruth was a wonderful and valued member of the Parkinson’s community, and she will be missed. Our thoughts are with Ruth’s family at this time.

Dr Geoffrey Gartside with residents of Buckland House in Mansfield


Living Well

Hydrotherapy comes from the Greek word meaning ‘healing water’. For people with Parkinson’s, hydro-therapy can be a great way to exercise in a safer and more comfortable environment. The buoyancy of water is a significant help for balance difficulties, the warmth of the water helps with stiff and sore joints and muscles, and the impact on joints is reduced. Water also provides a resistance to movement, meaning you get a great work out. Research also indicates some very specific benefits to balance for people with Parkinson’s.

REsEaRChIn a recent study, exercises were based around challenging muscles used in balance and strength. One group did the exercises on land and the second group did the exercises in water.

Both groups improved their balance scores but the water-based participants showed a greater improvement in their scores than land-based participants.

Why Is ThIs so?First, we must understand what goes into maintaining balance. Our body does this through an automatic feedback loop, which is linked in a series of subconscious pathways that sense touch, sight and motion on land. This loop is understood by the basal ganglia and other parts of the brain, which in turn send messages down to the body’s muscles to provide appropriate postural control and movement.

The authors of this trial suggest that because water is a different and novel environment, people with Parkinson’s may be more likely to use more conscious pathways that help bypass the subconscious pathways they may normally struggle with. This may mean that water-based exercise is a more effective environment compared to land-based exercises.

ThE EFFECT oF WaTERWater, being more dense than air, provides a greater resistance for the body to move in. Therefore each movement can demand more muscle activity and therefore demand postural control. As water is constantly moving around us, muscles are used even when we are standing still. This partly explains why hydrotherapy can make someone feel tired even though the exercises are gentle.

However, water is also supportive because of the effect of floating, known as buoyancy. Hydrotherapy can be a great place to improve range of motion in joints and muscles, especially if the water is warm. As a result, large circular movements are easier to achieve. Also, most people feel more relaxed in a water-based exercise setting.

Water also applies pressure on the body, and this pressure increases with depth.

This can improve the awareness of our l egs and arms, especially if they are moving, because of the changing resistance of the water on the skin, muscles and joints. The ability to sense the position of our limbs is called proprioception, and it is an important ingredient for balance. Perhaps this may explain why people with Parkinson’s improve their balance in the water.

WhaT soRT oF ExERCIsEs aRE IDEal?

RotationalExample: Using hand paddles, make large sweeping movements across diagonals, in and out of the water to challenge your body.

agilityExample: High and fast stepping on the spot, then in zig-zag formations, using both arms and legs.

speedExample: Perform a set of 10 star jumps in the water, and repeat 3-4 sets.

BoxingExample: With floats or no equipment, box forwards and sideways while marching on the spot. Try placing one foot in front of the other.

lungesExample: Holding a noodle, lunge forward as far as possible while pushing the noodle in front.

aerobicExample: Walk briskly, or try and jog forwards, sideways and backwards in the water. This could be made more difficult by changing directions rapidly.

Try and do these exercises with a friend or someone you trust, not only to ensure safety but also to make it more social. The happier and the more enjoyable you make the activity, the more you will benefit.

Disclaimer: Before you undertake exercises in an aquatic environment, please consult your physiotherapist or medical health professional to ensure your safety and suitability for this form of therapy.

Reference:

Volpe D, Giantin M, Maestri R and Frazzitta G. (2014). Comparing the effects of hydrotherapy and land-based therapy on balance in patients with a Parkinson’s disease: randomized controlled pilot study. Clinical Rehabilitation: 28 (7) DOI: 0269215514536060

Hydrotherapy for Parkinson’s

Written by Keegan Bow of Klint Neurological Physiotherapy


Emotional changes

Parkinson’s is a condition that brings many changes to a person’s life. Sometimes the biggest changes can be those that affect your emotional state. Receiving the diagnosis and learning to live with a life-changing condition is not an easy task. Everyone will handle this challenge differently.

In this issue of InMotion, we speak to Paula Forsyth, a clinical social worker and counsellor. Paula has experience in a range of areas and now practices as a private clinician where she sees a lot of clients with Parkinson’s and their families. Paula offers us some valuable insights into the emotional changes and challenges of living with Parkinson’s.

PV: Describe some of the emotional changes you commonly see in people recently diagnosed with Parkinson’s.PF: Elizabeth Kubler-Ross became famous for her theory on the five stages of grief. This theory is not foolproof, however it is a good start to describing the emotional

responses of grief. Her stages are: denial, anger, bargaining, depression and acceptance.

Recognise any of these? Having a diagnosis of Parkinson’s is frequently a cause of grief; grieving for future plans, for sense of identity, for life’s dreams. As everyone is different this grief phase can last a day or a lifetime or somewhere in-between. Some get stuck on one of these stages, others tend to circulate around a couple of 'favourites'. None are wrong to experience. There is no ‘perfect’ way to cope. However it helps to be able to identify where you are at so that you can start to choose where you would like to be.

PV: are the emotional changes similar in people who have been living with Parkinson’s for many years?PF: I’m a big fan of collecting people into groups when it is helpful – e.g. some people don’t 'see' mess, some people do

Denial, Acceptance and Everything In-between

Again, everyone moves towards acceptance at different paces. Some can accept almost instantly, others accept little bit by little bit.


– however most situations require individual assessment. A person who tends to see a glass “half-full” will tend to actively search for the positive aspects of any situation, including a diagnosis of Parkinson’s. A person who is gently supported by those around them will tend to reflect on what a diagnosis means for them in their own time with a more open-minded philosophy. The length of time a person has been diagnosed is not necessarily an indication of better or worse coping strategies.

There are people who may need more understanding, time or support. Often it is those who have one or more of the following occurring: dependent children, unfulfilled financial obligations, identity connected to providing for others, identity connected to physical abilities, have experienced multiple losses, have no experience with medical conditions, are unfamiliar with asking for help, are uncomfortable adapting to change, have a history with mental illness, depression or anxiety, have additional medical issues. As most of us can tick at least one of these boxes, it is understandable that at some point in time most people will benefit from help.

PV: We know how physical symptoms can impact on quality of life, but how can emotional changes impact on quality of life?PF: One person sums all of this up for me: Stephen Hawking, the ‘genius in the wheelchair’. Hawking has a body that does not cooperate with him and causes significant discomfort – yet he has ploughed on to make phenomenal advancements in the scientific community. This is not just because he is a genius - what emotional strength would this man have to have? It is this aspect of the man that I am most fascinated and inspired by. Who are your heroes? Why?

Think back to different times in your life that you remember fondly. What about these moments made a bigger impact, the emotions or the physical aspects? It is undeniable that physical health is a wonderful enabler of emotional satisfaction; however perfect physical health and an unhappy headspace is not something many of us would aim for.

PV: Michael J. Fox has been quoted as saying “acceptance doesn’t mean resignation; it means understanding something is what it is and there’s got to be a way through it”. What are your thoughts regarding this statement? Is acceptance necessary?PF: Denial is: “A refusal to grant the truth of a statement or allegation; a contradiction.” Denial requires concentration and effort to maintain. It is generally a waste of time and energy, and leads to disputes between those around us who are attempting to offer assistance. Is it ever useful? Sure, while managing the grief response, denial can help the brain block unwanted information and allow an artificial safety net and reduce traumatic responses. It absolutely has its place and everyone will experience it differently, some fleetingly, some more long-term. Denial is normal but clinging to this coping strategy long-term can lead to being ill-informed about potentially helpful options, distance you from others and increase negative ‘self talk’.

Acceptance: The act of taking or receiving something offered, or the act of assenting or believing acceptance is the start of improvement. It is impossible to get help for something you don’t believe in. Acceptance means having a clearer mind and allowing informed choices. It means being able to spend energy on hunting for ways to improve and move forward on your own terms. Acceptance takes bravery and honesty. Acceptance helps you to connect with others openly and warmly.

Again, everyone moves towards acceptance at different paces. Some can accept almost instantly, others accept little bit by little bit. When has denial worked for you? When has acceptance? How do you perceive others that accept Parkinson’s? How do you perceive others that deny it? Which group is living a more emotionally comfortable life?

PV: What advice would you give to someone who is experiencing denial or disbelief regarding the diagnosis?PF: The grief stages are simplistic but real. None of us are perfect. Not me, not you, not those around you. Understand where you are at. Be honest with yourself with how you are coping with Parkinson’s. Lean

on your medical team and other supports when you are unable to cope alone. Be brave and reach out for help.

PV: Are there any specific coping strategies that people can employ to help them come to terms with a diagnosis of Parkinson’s?PF: Learn about yourself. Do you like to adapt to changes? How have you managed challenges in the past? Would you expect others to know everything without asking? Do you expect yourself to go through this alone? Can you ask for help? What coping strategies do you most rely on? Do you need to look for new/moderated coping strategies?

The world is full of people offering to support you. We are ready to help when you are ready to ask for it.

To find out about support in your local area talk to your GP or call the Parkinson's Victoria Heath Information Team on 1800 644 189


PSP

Dear PSP, MSA and CBS members

Just a short note to keep you up to date with our news. We had a good turn out for A Walk in the Park. About 40 supporters and some dogs enjoyed the sunshine and fun as we walked the four kilometres amongst 3,200 Parkinson’s supporters. Our new black t-shirts stood out in the sea of white Parkinson’s walkers!

Our group continues to grow at the Cheltenham meetings, highlighting the fact that more support is needed. Our Mornington group, although small, is very vibrant and caring. Victor McConvey, Ann Robinson (PSP Support) and myself travelled up to Brisbane for a PSP seminar on 27 September, and we are looking to start a support group in the Brisbane area.

I hope all carers are taking the time to smell the roses in this wonderful spring weather and that your loved ones are as well as they can be.

As we are now getting warmer weather, and due to its popularity, we have decided to run our lovely wine fundraiser again. In the very near future order forms will be distributed to enable you to stock your cellars. Please support us in our endeavours to raise money for research.

Take care, anne Mooney

Message from the Convener

There are always a number of clinical trials discussed at this meeting; the purpose of these trials is to look for the cause, improve treatments and perhaps find a cure for movement disorders. It is very encouraging to see a number of clinical trials looking specifically at MSA, PSP and CBS. While no trials to date have resulted in treatment improvements, they have allowed us to increase knowledge of the conditions.

Some recent studies that have significantly increased our awareness of PSP and MSA include:

Multiple system atrophy: Rifampicin studyThe purpose of this study was to determine whether Rifampicin, an antibiotic, was effective in slowing or reversing the progression of multiple system atrophy (MSA). In the laboratory exposure the

News from the Movement Disorder and Society Meeting, Stockholm, June 2014


antibiotic seemed to stop the aggregation of Alpha Syncline, a protein implicated in MSA. The trial was developed as a placebo-controlled ‘blind study’ where the participants and research staff were unaware of who was taking a placebo and who was taking the active agent. However, the results in the human trial unfortunately did not show that Rifampicin had any impact in slowing the progression of MSA.

Progressive supra Nuclear Palsy: TaURosThis study looked at the value of an agent called Tideglusib in restoring tau proteins in the brain. Abnormal tau proteins form the neurofibrillary tangles which cause the symptoms of PSP. This trial was carried out over one year and involved two doses of Tideglusib. The results of this trial were not encouraging and there appeared to be no real change in the progression of PSP.

A key difficulty discussed at the Cheltenham Peer Support Group meeting was saliva and secretions.

A common issue experienced by people with PSP and related conditions is difficulties with saliva and experiencing episodes of coughing. In Atypical Parkinson’s, saliva changes and it often becomes thicker and stickier; it can sometimes pool in the mouth, becoming ropey or stringy and occasionally stimulating a coughing episode. Seeing a speech pathologist can help in establishing a secretion management plan.

Other techniques that can be helpful include: taking regular sips of juices, particularly dark grape juice which

From the Meeting

helps break down secretions; and using a nebuliser mask and pump with some normal saline at regular intervals, particularly before meals or during coughing episodes, will help moisten the airway and make it easier to cough up sticky secretions.

More information about management tips is available from the Parkinson’s Victoria Health Information Team on 1800 644 189


Feature Story


A Walk in the Park 2014

Our biggest and best walk ever

On Sunday 31 August 2014, 3,200 participants travelled from across Victoria and gathered at Federation Square to walk under glorious spring skies in support and celebration of those living with Parkinson’s, as well as remembering and honouring loved ones.

The sea of white T-shirts and purple balloons travelling from Fed Square and along the banks of the Yarra River was a very special sight and the event contributed greatly to generating awareness of Parkinson’s within the wider community.

We are so grateful to our participants and supporters for your outstanding fundraising efforts as individuals and teams. To date, you have helped to raise a record-breaking $240,000. Parkinson’s Victoria is committed to reinvesting these funds into providing additional services to support people living with Parkinson’s and increasing its investment in research to help find a cure.

Special thanks also goes to Parkinson’s Victoria Ambassador, Shane Jacobson and his mum Jill Goss, along with dignitarie s City of Melbourne Cr Richard Foster and Federal Minister for Chisholm Ms Anna Burke MP who cut the ribbon at the start of the Walk.

We sincerely thank you for making A Walk in the Park 2014 such a successful event for the Parkinson’s community, and look forward to your support at an even bigger and better A Walk in the Park next year.

Now’s the time to pencil next year’s A Walk in the Park date in your diary: Sunday 30 August 2015!

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Personal Stories

Mildura’s Alan Collins is a sharp shooter

Mildura Support Group member, Alan Collins is a successful shooter who recently represented Victoria at the Open Australian Titles.

At this year’s national titles in Adelaide, Alan competed against the top shooters in the country, coming second with an impressive display of skill. At 66 years of age, he won the Veteran’s title competing against others aged 65 and over, and was the top scorer for the Victorian team.

In the recent North West Victorian Small Bore Championship, Alan had his best ever result, coming second in the 50 metres and third in the aggregate.

To give you an idea how difficult this can be, his targets at 50 metres are just 10mm across, and all shots must fall into, or at least touch that ring to score a 10. With the eye of an eagle, Alan put 18 out of 20 shots inside a circle the size of a 20 cent coin.

Alan’s result was successful by anyone’s measure but for someone with Parkinson’s who has to manage tremors and mental fatigue while training for long hours at the range, this is nothing short of extraordinary.

Alan has tried various types of shooting. He now specialises in ‘bench rest shooting’ where the rifle sits on adjustable rest at the front and a leather pillow-like rest at the back. The rifle he uses features a barrel tuner and a scope, all of which he can adjust to suit the conditions.

“I am probably lucky in that I do not shake too much and then in the bench rest event we shoot at night when Mildura evenings are often calm,” said Alan.

As a person living with Parkinson’s for the past nine years, Alan is a great role model showing how to keep active in body and mind and enjoy his passions.

Tell your story

We welcome personal stories and contributions of approx 150 words or visual artwork to include in future editions of InMotion.

Email: [email protected]

Post: Po Box 2606, Cheltenham, VIC 3192

Anne Atkin receives Victorian Senior Achievement Award

Congratulations to Anne Atkin who received a Senior Achievement Award for her work with Parkinson’s Victoria. Anne walked the red carpet at Government House before being presented with her Award by Minister for Health and Ageing David Davis on 2 October.

Anne set up the Painting with Parkinson’s program across Victoria and in Western Australia. The program helps people living with Parkinson’s to relax, develop a new skill and have some fun in the process.

Painting with Parkinson’s has recently been accepted by community and health centres across the state. It is another development that Anne is very excited about as more people with Parkinson’s will have access to the program and can enjoy its many benefits.

Alan Collins takes aim

Anne Atkin


Change @ home

Sometimes it can be difficult to objectively look at your own house and see its potential shortcomings. You may think your house is fine and will always remain fine. Indeed, it can be difficult to predict how your function will change and in what ways the home might become challenging. For this reason it’s a good idea to get an objective assessment of your home completed by an occupational therapist (OT). OTs are specially trained to identify potential difficulties and hazards in the home environment. They regularly complete home assessments to understand how people function in their home.

Once an OT has completed a home assessment, they will make recommendations about possible changes to the home that could benefit you now and into the future. These changes are commonly referred to as home modifications. In some circumstances you may be eligible for a government subsidy to assist with the cost of modifications; an OT can provide more information on available subsidies.

Having the ability to move about safely and use all the areas of your home can easily be taken for granted. We encourage you to think now about what changes you can make so that your home remains a place of comfort, happiness, choice and safety. Good house design benefits everybody.

Talk to your GP if you would like to find an occupational therapist in your local area

A House Ready for Change

Our home is a place we associate with comfort, happiness, choice and safety. It is no surprise most people have a wish to remain in their own home for as long as possible. However, the physical changes that Parkinson’s brings can make it difficult to move about freely and safely within your home. Whilst your home might be perfectly functional for some people, it may not be completely appropriate for someone faced with the physical changes of Parkinson’s.

Making some small changes to your home can make a big difference. Take a look around your home and ask yourself the following questions. Try to be as objective as possible:

• Can I get in and out of the home safely?

• Can I safely manage the stairs? Will I always be able to?

• Is there adequate lighting over walkways and stairs?

• Are there any hazards obstructing walkways?

• Is there adequate space in rooms and corridors to walk and turn freely?

• Can I comfortably and safely transfer from the shower and toilet?

• Are there any areas in the home that are prone to becoming slippery?

• Do I freeze in any particular areas of the house?

• Are there any activities or areas at home that make me feel tired?

• Can I maintain a comfortable temperature in the house?

• Are taps, door handles and other fixtures easy to use?

Did you identify any possible areas of difficulty? Even if you don’t feel ready for any changes right now, it is a good idea to start thinking about what you might need in the future. Parkinson’s is progressive, and your physical capabilities will inevitably change over time.

Even if you don’t feel ready for any changes right now, it is a good idea to start thinking about what you might need in the future.


Change @ home

In every medical condition, treatments are most effective when measurement guides the choice of therapy. For example, in diabetes blood glucose levels guide the choice of treatment and measure its effectiveness. However there is no similar, objective measure to guide therapy in Parkinson’s.

In a single day, people with Parkinson’s oscillate between the slowness and disability of under treatment and the annoying involuntary movements of over treatment. When visiting their specialist it may be difficult for a person with Parkinson’s or their carer to accurately communicate their symptoms. What is needed is an objective measure of the movement abnormalities of people with Parkinson’s while going about their activities of everyday living.

In untreated Parkinson’s, movements are described as bradykinetic, a Greek word meaning slow movement. Medications may produce excess troublesome movements called dyskinesia. For a long time, these were considered to be fundamentally different movements to normal. A research

team at the Florey Neuroscience Research Institute in Melbourne came to the conclusion that these movements were not so much “abnormal” as normal movements but made in the wrong context.

The team at the Florey placed sensors on the wrist to measure acceleration and monitor this movement. This recording of movement was then developed into a system, the Parkinson’s KinetiGraph™ (PKG™), that could be readily used in routine clinical practice for the management of Parkinson’s.

The PKG™ consists of a small wrist worn device for collecting data and a report for the doctor that shows how bradykinesia and dyskinesia vary throughout the day. The device also reminds the patient to take their levodopa medication and records the time when the patient registers that they have taken it. The PKG™ therefore helps show compliance in taking medications and how movement symptoms are impacted by medication.

As well, the research team has shown that when the PKG™’s bradykinesia score is very high, then it is almost certain that the

person is asleep. As day time sleepiness and night time disturbance is a major but treatable problem in Parkinson’s, the sleep data can be a major aid in better management.

The PKG™ system is now used in routine clinical care in leading centres in Australia, Europe, Asia and the UK. In these clinics, patients wear the PKG™ prior to their consultation so that the report is available to the doctor at the time of consultation. Feedback suggests that in approximately 30% of patients the PKG™ provides information that would not otherwise have been known. This is important in managing dosage, side effects and the timing and impact of other non-oral medication interventions known as “advanced therapies”.

The PKG™ provides the clinician with objective measurement that allows them to manage Parkinson’s with the same precision that clinicians can manage other disorders such as diabetes.

For more information please visit www.globalkineticscorporation.com.au

Global Kinetics - Parkinson's KinetiGraph™

Parkinson's KinetiGraph™


Have you ever discovered that you can’t do something you used to do, and explained it away as getting older?

Getting older is something that happens to all of us, however, when living with Parkinson’s not being able to do something you always took for granted can be a sign that we need to look at how effective our management is.

Parkinson’s is a progressive condition, and over time the body’s dopamine production continues to reduce; we manage this by giving medication that replaces or supports the dopamine level. Sometimes, particularly if you haven’t seen your neurologist in a while, the level of dopamine you need becomes greater than the level you are taking – that means it’s time for a change.

The need to adjust medications often occurs subtly and sneaks up on you. You might notice that it takes you longer to walk to the shops, or your handwriting is harder to read, or you are having more difficulty remembering things. It’s always valuable to be aware of some of these subtle changes and make your doctor aware of them.

Sometimes the changes can be quite noticeable – you may be aware of motor and non-motor symptoms fluctuating with highs and lows of medication, so the changes relate to when you take your medication, often worsening not long before you take your medications.

Some keys to identifying, communicating and managing the changes are:

• Be aware of your activities, especially ones you may only do occasionally, if something becomes more difficult or impossible you should mention it to your doctor

• Keep a diary or complete a ‘wearing off’ question card to help identify the symptoms you are experiencing

• Be diligent with taking your medication – on time, every time. Sometimes using a medication timer can help in getting into this habit

Medications: Time for a Change?

• If you’ve noticed a sudden change in response to medications, think. Have you done anything different? For example, a bout of vigorous exercise may cause you to use your medication up more quickly than normal

• Keep your appointment with your neurologist, plan ahead and where possible have an appointment booked

Over time treatment needs change, and to keep up with these changes medications will need to be adjusted. For many people medication regimens are very finely tuned, and ideally the only person who is adjusting them is your neurologist or doctor who speak directly with your neurologist.

Treatments are changing and improving all of the time. To achieve the best symptom control for your Parkinson’s, have regular visits with your neurologist. Be aware of the changes you experience as time goes by. This is the best way to manage the changes that living with Parkinson’s can bring.

Over time treatment needs change, and to keep up with these changes medications will need to be adjusted.


Research update

Improving outcomes with Deep Brain Stimulation. Neurobionics research at the Bionics Institute

Many people with Parkinson’s experience good symptom alleviation with Deep Brain Stimulation (DBS). Already over 100,000 people worldwide have received DBS treatment to alleviate certain movement disorders, in particular Parkinson’s and essential tremor.

In general, DBS helps reduce motor symptoms such as tremor, slow movement, muscle stiffness, and problems with gait. Although medications are typically the primary treatment for Parkinson’s, they can have severe side effects and their benefits vary over time. If the motor symptoms progress to a point where medications and other therapies are inadequate, DBS may help.

Today’s DBS devices require an array of electrodes to be implanted in the brain and a stimulator, containing a battery, to be placed under the skin usually below the collarbone. The stimulator delivers a series of brief electrical pulses to the electrodes. The parts of the brain closest to the electrodes are important in controlling movements, and they are affected by the electric stimulation in ways that reduce many of the unwanted motor symptoms of Parkinson’s and other movement disorders. Although the precise mechanism of action is unclear, the stimulation is safe and most people who undergo DBS benefit significantly from the treatments.

At the Bionics Institute, we are developing better DBS implants and carrying out studies on how to get the best outcomes from DBS.

The basic principle underlying our research is that nerves can be electrically stimulated to treat various neurological or sensory conditions. This principle applies both to the cochlear implant, with which the Institute – formerly the Bionic Ear Institute – has 30 years of experience, and to the bionic eye device that is currently under development.

The Institute’s Neurobionics program is specifically focused on development of an advanced device to treat Parkinson’s symptoms. This includes preclinical work to design and test improved DBS electrodes and clinical research to maximise patient benefit.

By Hugh McDermott, Deputy Director at the Bionics Institute


Our electrodes will be smaller than existing implants, enabling surgeons to target the selected areas in the brain more precisely. They will be connected to an advanced stimulator developed originally for cochlear implant use, which will provide much greater control over the patterns of pulses delivered to the brain, and will be placed in the skull rather than in the body far from the electrodes.

Our clinical studies currently involve users of DBS who are living with Parkinson’s or essential tremor. We have developed a sophisticated system for accurately measuring movements and disorders of movement, as well as certain side-effects of DBS such as problems with speech production. By relating these measurements to the settings programmed into the DBS stimulator (e.g. the level of the pulses), we can determine which settings will give the most benefit with the least side effects to each patient. In addition we can ensure that the implant has the longest possible battery lifetime, which means longer intervals between surgical battery replacement or between charging sessions.

By combining this information with our advanced stimulator and electrodes we will produce a new DBS system that provides even better outcomes for people living with Parkinson’s and other disorders.

We believe our research can transform lives. This year, the Bionics Institute is celebrating 30 years of research and development know-how. We are using our proven technology platform to develop devices which will provide practical benefits for a large number of people. However, this requires significant funding and commercialisation to take our innovative DBS system into clinical practice.

We have therefore established a company, Bionic Enterprises, to seek investment and commercial partners and to manage the path to market. Although this work is at an early stage, by focusing on Parkinson’s and with adequate funding and investment, we predict we can get our advanced DBS device into clinical trials within about three years.

For more information visit www.bionicsinstitute.org

We believe our research can transform lives. This year, the Bionics Institute is celebrating 30 years of research and development know-how.

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Tech update

Smiling Mind is a free mindfulness meditation app that you can download onto your smartphone or computer. It’s a simple tool developed by a Melbourne-based not-for-profit company and designed by a team of psychologists to help users learn how meditation can provide a sense of calm, clarity and contentment. Smiling Mind is meditation made easy, and could be really useful for people with Parkinson’s.

Mindfulness is a skill or quality of bringing one’s complete attention to the present. It involves paying attention in a particular way, on purpose, in the present moment – as Albert Einstein said, "Any man who can drive safely while kissing a pretty girl is simply not giving the kiss the attention it deserves."

In recent years, mindfulness meditation has surged in popularity for use in the treatment of stress, resilience, anxiety, depression and other physical and mental illnesses.

Highly regarded institutions such as UCLA, Harvard, Oxford, and our own Monash and

Smiling Mind

Melbourne Universities have developed clinical studies into the positive impacts of mindfulness meditation.

Ringwood Support Group recently enjoyed their first session of mindfulness training, and Parkinson’s Victoria have partnered with Monash University and undertaken research regarding mindfulness and Parkinson’s with positive results.

For people with Parkinson’s, mindful meditation can provide the following benefits:

• Lowered stress, leading to improvement in general symptoms

• Improved mood

• Improved relationships

• Improved concentration

• Slowing of neuro-degeneration

• Improved emotional management

• Strategies for freezing

Smiling Mind is available for your computer, iPhone, iPad and Android

For more information on the app, visit www.smilingmind.com.au

• Better pain management

• Improved movement

The Smiling Mind app is really easy to use. You simply download the app, select your age group and get started.

The first session is a 5-minute ‘body scan’ which brings awareness of the different parts of your body from the tips of the toes to the top of the head. Further sessions introduce breath awareness and a 1-minute practice, which can be used as a fantastic pause in the day.

Your progress is logged as you go, which is great for tracking your improvements. When starting to practice meditation, it can be really helpful to have a guide. Smiling Mind is an excellent choice, as it’s simple to use, has been developed by psychologists and other mental health professionals and helps you along your mindfulness journey!

Reviewed by Nicola Graham


Young @ park

Relationship changes

When you, or someone you are in a relationship with, are diagnosed with Parkinson’s, there can be many changes in your life. The physical changes are often the first that we notice, but there are also mental and emotional changes, changes to your social life, and changes in your relationship.

Some people experience relationship issues in the early days, when they’re adjusting to diagnosis, while others may run into problems after many years. Below is some advice on how to manage these changes as they come.

REaCTIoNs aND ExPECTaTIoNsHow both parties in the relationship react to the diagnosis will affect your individual wellbeing and your relationship. There is no right or wrong way to come to terms with a diagnosis, but trying to understand each other’s view can help to minimise conflict.

Wherever possible:• Share your opinions without judging

each other

• Make sure you get as much accurate information about Parkinson’s as you can, so your expectations are as realistic as they can be

• Share this information with others around you (children, friends, extended family) who will be affected too

EMoTIoNal ChaNGEsAfter the initial shock of a Parkinson’s diagnosis, many couples find themselves in a period of mourning for the life they previously had. You may be coming to terms with changes in your lifestyle, personal identity and your relationship. If you have Parkinson’s, your self-image may have been affected by having to make changes in your personal and working life, or to your parenting responsibilities. Talking openly as a couple about these changes and how each of you feels is vital.

ChaNGING RolEsWhen someone has Parkinson’s, it’s common for the dynamics and roles within a relationship to change – and this can happen at any stage. Any illness or disability is likely to have an impact on even the healthiest of relationships.

As Parkinson’s progresses, you may find you and your partner taking on the roles of ‘carer’ and ‘cared-for’. This can be difficult if your relationship was very different before – for example, if the cared-for person was previously the breadwinner and decision-maker in the household or if the carer had an independent lifestyle.

Some couples find it hard to see each other as equal partners in these new roles. It may take time to adapt to a new type of relationship that continues to be fulfilling. Try to:

• Maintain a sense of independence. You should have time to be alone and do your own thing as well as doing things together

• Focus on quality of time together, rather than just quantity. Make sure you make time to talk, laugh or just be quiet together

• Find mutual activities, such as playing board games, spending time watching a film or socialising with friends, where you can be equals

• Work towards common goals. It could be decorating a room, getting fit or saving for a holiday

• Take any opportunity to reverse the caring role. This may be where the person with Parkinson’s continues to be an emotional or intellectual support to their partner

• Keep communicating with each other

• Listen and learn. People change and grow over the years - don’t assume you know your partner so well that you can predict what they’re going to say or do

• Be physically affectionate. Some movement symptoms may make it more difficult to be spontaneous, but touch – whether it is a peck on the cheek, a hug or making love – is an essential part of being human


This edition highlights two groups who have recently changed their leadership structure to share the activities and responsibilities of the groups:

Ringwood Parkinson’s support GroupRingwood has been operating with a wonderful leader at the helm for a number of years, however, they recently formed a committee to assist their esteemed leader in running the group.

The committee members – including a Secretary/Treasurer, a Membership Officer and an Information Officer – will no doubt do a wonderful job of sharing the load!

Manningham Parkinson’s support GroupManningham (Doncaster) also recently formed a committee of leadership, and had an open forum at their September meeting to discuss and formulate future plans for their group.

Keeping in mind that a group should cater to the needs and interests of its members, the Manningham group took the opportunity to collectively discuss the speakers and activities they would like at their meetings as well as future social functions and outings.

In Support

Some of the best ideas for running Peer Support Groups come from the groups themselves!

Be inspired by updates from Peer Support Groups across the state:

• In July, the North East Parkinson’s support Group had a speaker from a local art gallery come along and talk to them about relaxation and art as a form of therapy.

• The Bairnsdale Parkinson’s support Group had a physiotherapist come along to their August meeting to talk to them about exercise for Parkinson’s and a new balance program commencing in their area.

• For Parkinson’s Awareness Month in September, the Ballarat Parkinson’s support Group had a table at their local shopping centre, raising awareness, providing information about Parkinson’s and letting the community know about their local group.

Idea x-change In the spotlight

Each edition of features a dedicated section tailored specifically to Parkinson’s Peer Support Groups

Approximately 1,200 people living with Parkinson’s and their family members and carers regulary attend over 60 Parkinson’s Peer Support Groups around Victoria. Parkinson’s Victoria would not be able to support so many without the help of the wonderful people who coordinate, facilitate and provide assistance to these groups.

We would like to take this opportunity to thank the following people for the leadership, dedication and compassion they have shown within their groups and local communities:

Judy Buckley (Camberwell)Judy has been involved in the running of the Camberwell Parkinson’s Peer Support Group for 12 years. Involved as the group’s Secretary, Judy took on the role of President two years ago, and has managed the group with sensitivity, consideration and dignity. While she is still keen to attend the monthly meetings, Judy is now taking a step back from the active role of facilitating the group.

Jean Rowe, Margaret Brasser and Jack Milledge (Rosebud) Over the last few years, Jean, Margaret and Jack have taken on a range of responsibilities to facilitate the Rosebud Parkinson’s Peer Support Group. Jean as Secretary, Margaret as Treasurer and more

recently, Jack as Group Leader, have worked to raise awareness and increase the support available to those living with Parkinson’s in Rosebud and surrounding areas.

June Paterson (Werribee) June coordinated the Werribee Parkinson’s Peer Support Group for a number of years, helping people in western Melbourne access Parkinson’s information and share their stories in a supportive environment.

We are very grateful to Judy, Jean, Margaret, Jack and June for the commitment and care they have shown to people living with Parkinson’s.

Acknowledgements


In Support

Peer support for people with Parkinson’s can take on a number of different styles. It may run face-to-face, over the internet, or on the phone. It may be a few people connecting or a large group gathering. It may be formal or informal, and some may undertake special activities or have a particular focus.

If you are facilitating peer support, it can help to have an idea of what style your group members prefer. Hold a discussion with the group’s members about the way the group currently runs, and whether this is how they would like it to continue.

Our current Parkinson’s Peer Support Groups focus on different areas and have different ‘personalities’. Some of these include:

Education/information focus• Guest speakers and structured activities

at every meeting

• Speakers tend to focus on Parkinson’s, health and community information

Fun/distraction focus• Fun meeting activities and speakers, not

specifically related to Parkinson’s

• Excursions to local places of interest, games, social gatherings over a meal

Therapy focus• Activities or discussions that are

undertaken with the aim of achieving a particular physical or psychological benefit, for example: yoga/tai chi to improve balance and rigidity; physiotherapy and other exercises to improve fitness; singing to improve speech; or art therapy

Free form• No guests or planned activities, just see

what happens

• Informal and centred around conversation (and possibly food!)

Mixed bag• Different people are after different things,

and it may be hard to find any one personality that suits every individual!

• A mixed bag might work best – putting together a combination of all of the elements above according to what suits your members

As well as having a ‘personality’, different groups have different styles. Your group might fit into one of the below styles:

soloist• One individual takes on all the

responsibilities and tasks involved in running the group

Ensemble• Many members of the group have

different roles and responsibilities

Formal• Maintain an agenda and minutes of each

meeting

• The room is laid out formally, for example the leader or committee sits at a table at the front, while members sit in rows

Informal• Casual (no agenda or written minutes)

• The room is laid out so that everyone sits in a circle or in groups

ThERE Is No RIGhT Way!This article isn’t about telling you how peer support should be done; it’s about the many ways that it could be done. It is up to you and your peers to select the specific combination that works best for all of you.

Keep in mind that your personality or style might evolve or need to change over time, so check in with your members regularly to ensure that everyone is having the best possible experience.

If you are interested in attending a Parkinson’s Peer support Group in your area, please contact the Parkinson’s Victoria health Information Team on 1800 644 189.

Advice for running a successful support group

Reminder!

Many groups have informal meetings or no meetings at all in December and January. Make sure you check in with your local group to avoid any confusion.


Informing You

Upcoming health events

New education sessions for aged care facilities

On 11 and 12 September, Parkinson’s Victoria hosted the inaugural Living Well Seminar in Melbourne, as part of Parkinson’s Awareness Month.The first conference of its kind to run in Australia, Living Well focused on providing information to people who have been living with Parkinson’s for seven years or more. The conference was unique in having streams for both people living with Parkinson’s and for healthcare professionals from around the country involved in the treatment of Parkinson’s. Participants provided positive feedback on the relevance of the topics presented and how helpful it was to learn more tips on living well. Look out for more educational seminars in 2015.

To assist staff at aged care facilities that may have residents living with Parkinson’s to learn more about the condition, Parkinson’s Victoria will be offering in-service education sessions in 2015. This service provided by Parkinson’s Victoria Health Information Team, will offer an accredited education package that will enable aged care facilities to obtain Parkinson’s Victoria Preferred Provider Status.Education packages can be tailored to meet the individual needs of each facility and held in-house. Education sessions can also be provided for residents with PSP, MSA and CBS atypical Parkinson’s conditions.

"Parkinson’s Victoria is keen to support aged care facilities staff to have a solid understanding of Parkinson’s, so they can best help their residents living with the condition. We welcome enquiries about this service from facilities across the state," said Victor McConvey, Health Information Team Manager. To book an in-service education session or register your interest: Call (03) 9581 8700 email: [email protected]

Inaugural Living Well seminar a success DaTE ToPIC loCaTIoN

13 Nov 2014 Community Seminar: Understanding Parkinson’s - FREE

Melton Community Centre, Cnr High and Yuille StreetRSVP: 9581 8700

During 2015 150 visits to Peer Support Groups by Parkinson’s Victoria Health Information Team

Throughout Victoria

During 2015 34 RACV Safety Mobile Information Sessions at Peer Support Groups

Throughout Victoria

April 2015 Recently Diagnosed Seminar Geelong

April 2015 World Parkinson’s Day – Public lecture with The Florey Institute

Melbourne

April 2015 Parkinson’s Care – Parkinson’s Victoria Aged Care Package Launch

Melbourne

May 2015 Atypical Parkinson’s Seminar Melbourne

27 - 29 May 2015

Parkinson’s Australia National Conference (parkinsonssa.org.au)

Adelaide

June 2015 Recently Diagnosed Seminar Horsham / Stawell

Aug 2015 Recently Diagnosed Seminar Bairnsdale

Sept 2015 Young Onset Conference Melbourne

Sept 2015 Health Professionals Parkinson’s Seminar Melbourne

Oct 2015 Recently Diagnosed Seminar Bendigo

Nov 2015 Recently Diagnosed Seminar Melbourne

TBC Recently Diagnosed Seminar Shepparton

Publisher: Parkinson’s Victoria Inc.Office: 8b Park Road, Cheltenham VIC 3192T: (03) 9581 8700 Free call: 1800 644 189 Email: [email protected]: 68 038 728 034 Print Post approved 100011035Frequency: InMotion is published four times a year and is distributed to members of Parkinson’s VictoriaMembership Enquiries: T: (03) 9581 8700, email: [email protected] Enquiries: T: (03) 9581 8700, email: [email protected]

Disclaimer: Information and articles contained in InMotion are intended to provide the reader with useful and accurate information of a general nature. While every effort has been made to ensure information is accurate and up-to-date at the time of publication, Parkinson’s Victoria Inc. does not guarantee correctness or completeness of information. Information is not intended to substitute for medical or legal advice nor is Parkinson’s Victoria Inc. recommending legal or medical advice. Readers are advised to seek their own medical or legal advice as appropriate.advertising Disclaimer: Advertisements appearing in this publications are provided to assist consumers locate and purchase suitable products and services. Parkinson’s Victoria Inc. does not endorse any one product / service over another, nor does it receive commission on sale of items. Consumers are encouraged to seek advice from their health care or allied health professions and discuss the supplier’s terms and conditions when purchasing a product or service. Parkinson’s Victoria is not liable in the event that a product is not satisfactory.

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ISSUE 1, 2014 Featuring Research: Improving … 1, 2014 Featuring Research: Improving outcomes with DBS, Hydrotherapy for Parkinson’s and A Walk in the Park 2014 A MAGAZINE FOR …