2024 Winter News

World Parkinson’s Day

The first World Parkinson’s Day was held in 1997, commemorating the birthday of Dr James Parkinson.

We are still reflecting on how special our community is and how they showed their support for World Parkinson’s Day on April 11th. We not only stood in solidarity with the Parkinson’s community, but also acknowledged the resilience of individuals and their loved ones facing the daily challenges of this condition.

Here are some of the highlights:

Lighting up Purple Western Australia transformed the landscape into a sea of purple, casting a vibrant hue upon iconic buildings and

landmarks across the state. This visual spectacle served as a powerful reminder of the 15,000 individuals in Western Australia bravely navigating life with Parkinson’s.

This initiative is more than just a display of colour; it’s a beacon of hope. It represents our collective commitment to raising awareness and advocating for a brighter future for those affected by Parkinson’s.

Poem for Parkinson’s

Rebecca, who was diagnosed with Early Onset Parkinson’s in 2021, chose to share her journey with family and friends about living with Parkinson’s, by putting pen to paper.

Rebecca emphasized that her intention wasn’t to elicit sympathy; rather, aim to foster awareness and comprehension about her daily struggles, many of which remain unseen by those closest to her.

We extend our gratitude to Rebecca for graciously allowing us to share her poetic reflections with our community. Her courage in initiating dialogue with her loved ones sets an inspiring example for us all.

LOCATION/POSTAL ADDRESS

The Niche, 11 Aberdare Road, Nedlands, WA 6009

TELEPHONE (08) 6457 7373

FAX (08) 6457 7374

FREECALL 1800 644 189

EMAIL info@parkinsonswa.org.au

WEBSITE parkinsonswa.org.au

CHAIR

Gary Steinepreis

DEPUTY CHAIR

Professor Natalie Gasson

TREASURER

David Fisher

SECRETARY

Tamlyn Lennox

BOARD

Clinical Professor David Blacker, AM, Keith Geers, Kate Roberts, Geoff Waldock

CHIEF EXECUTIVE OFFICER

Yasmin Naglazas

OFFICE MANAGER

Toby Gummer

MARKETING AND FUNDRAISING MANAGER

Kerrin Girando

FUNDRAISING AND MARKETING COORDINATOR/OFFICE ASSISTANT

Sophie Darley

FINANCE MANAGER

Salil Koonja

CLINICAL LEAD

Sheree Ambrosini

PARKINSON’S NURSE SPECIALISTS

Amanda Coultous, Fiona Roscoe, Jo Chadwick, Kayleigh Rawle, Rachel Marshall, Donna Mallaby, Sheree Ambrosini

NURSE SPECIALISTS’ SECRETARY

Lena Divito

ADVERTISING ENQUIRIES

fundraising@parkinsonswa.org.au

Disclaimer - Parkinson’s Western Australia Inc has endeavoured to ensure that the information in this newsletter is accurate; however, we accept no responsibility for any errors, omissions or inaccuracies in respect to the information contained in the material provided by Parkinson’s Western Australia Inc. Nor is the provision of material by Parkinson’s Western Australia Inc. to be construed as any representation that there is no other material or information available in relation to the information provided. Further, Parkinson’s Western Australia Inc. accepts no responsibility for persons who may rely upon this information for whatever purposes.

FROM THE CEO’S DESK

I am thrilled to share with you the progress we have made in deepening our engagement with the Parkinson’s community. Over the past months, we have dedicated ourselves to actively listening, learning, and collaborating with individuals and organisations within this community to better understand and serve their unique needs. I am proud to report that these efforts have yielded valuable insights and laid a strong foundation for future endeavours.

Our commitment to connecting with the Parkinson’s community and building meaningful relationships continues to be unwavering. Central to our approach has been the practice of active listening. By creating open channels of communication and fostering a culture of empathy and understanding, we have been able to listen attentively to the voices of individuals within the Parkinson’s community. Through their stories and experiences, we have gained profound insights into the daily realities of living with Parkinson’s disease, as well as the complexities of managing its various manifestations.

Our engagement efforts have underscored the importance of tailoring our products, services, and initiatives to address the specific needs of the Parkinson’s community. By leveraging the insights gleaned from our conversations and collaborations, we are better equipped to develop innovative solutions that enhance the quality of life for individuals affected by Parkinson’s disease. Whether through the enhancement of existing support programs, development of new programs or the expansion of educational resources, we remain steadfast in our commitment to making a meaningful difference in the lives of those we serve.

We recognise that addressing the multifaceted challenges of Parkinson’s disease requires a collaborative approach. As such, we have actively sought opportunities to partner with key stakeholders, research institutions, and healthcare providers. By harnessing the collective expertise and resources of our partners, we can drive positive change and advance the collective mission of improving outcomes for individuals with Parkinson’s. One such initiative is the early intervention initiative, a collaboration with the Perron Institute, designed to establish more effective care pathways for the individual newly diagnosed with Parkinson’s.

As we reflect on our progress thus far, we are energised and inspired by the possibilities that lie ahead. Moving forward, we remain steadfast in our commitment to deepening our connections with the Parkinson’s community and continuing

our efforts to better understand and address their evolving needs. Together, we have the opportunity to make a meaningful difference and empower individuals affected by Parkinson’s disease to live their lives to the fullest.

In closing, I want to express my heartfelt gratitude to each and every one of the PWA staff for their dedication, compassion, and unwavering commitment to serving our stakeholders in the Parkinson’s community.

From the Nurses’ Desks

SHEREE TAKES ON NEW ROLE OF CLINICAL LEAD WITH PASSION

It is with great pleasure that we announce the appointment of Sheree Ambrosini, currently working with our Parkinson’s Nurse Specialist team, to the position of Clinical Lead, Parkinson’s WA. Commencing at PWA last October, Sheree has demonstrated that she has the background and the high level of knowledge and skill that has resulted in her successful application for this role.

Sheree joined PWA last year, leaving the role of Duodopa Nurse Specialist with Partizan Health. She came to our organisation with extensive experience as a Movement Disorder Nurse, and experience practicing as an independent Nurse Practitioner in Parkinson’s.

She has qualifications as a Registered Nurse, Master of Nursing Practice - Nurse Practitioner, Master of Gerontology and Postgraduate of Advanced Clinical Nursing – Neurosciences stream. She describes herself as having “an interest in the investigation of aspects of Parkinson’s that will help to improve client health and wellbeing.”

In the past, Sheree has provided mentorship for a new Parkinson’s Nurse in rural Victoria as part of the Australasian Neuroscience Nurses Association (ANNA) mentorship program. She has previously

Your efforts are truly making a difference, and I am confident that together, we will continue to drive positive change and create a future that has those living with Parkinson’s ‘living well’.

Adj Professor Yasmin Naglazas Chief Executive Officer

held the position of secretary on the Movement Disorder Chapter of ANNA.

Sheree also describes herself as having “a passion to provide proactive care for the Parkinson’s community” and as a result of her work to provide a quality service to the community, she was the 2019 recipient of the Victorian Rural Health Awards 2019 - Nurse of the Year.

The Parkinson’s Clinical Lead is the most senior clinical position in our organisation, assuming responsibility for overall clinical governance and risk, with a team of Parkinson’s Nurse Specialists (PNS) as direct reports. The role is a key position in advising the CEO on relevant operational and strategic matters and assisting in the forward planning for the PNS Service. The role provides clinical leadership, mentoring and consultancy to nursing, medical and allied health care professionals, and relevant stakeholders, both internal and external to Parkinson’s WA. The role will fill the gap that will be left by Janet McLeod, who retired on the 12 May 2024.

Sheree Ambrosini

Nurses’ Updates

Exploring Parkinson’s Risk: How Genes and Pesticides Play a Role.

In a recent study, scientists at the University of California, Los Angeles (UCLA) looked into why some people exposed to pesticides might be more likely to develop Parkinson’s. They focused on how our genes and environmental factors like pesticides, can team up to affect our health.

Here’s what they found: They studied over 700 people with Parkinson’s who had been around pesticides. They found that changes in certain genes, especially ones linked to a part of our cells called lysosomes - which help clean up waste, might make a person more likely to get Parkinson’s if they’re exposed to pesticides.

To put it simply, picture your body as a complex machine, and lysosomes as the components responsible for cleaning up cellular waste. If these lysosomes are impaired due to genetic changes, exposure to pesticides could overload them, similar to throwing too much trash at a broken garbage can. Over time, this buildup may contribute to the development of Parkinson’s.

They also looked at another group of people with Parkinson’s who weren’t around pesticides

as much. They found that these gene changes weren’t as common in this group, suggesting that pesticides might team up with these gene changes to cause Parkinson’s.

This study helps us understand better how our bodies work and why some people might be more likely to get Parkinson’s. While more research is needed, knowing about these gene and pesticide connections could help us find ways to prevent Parkinson’s in the future. Gene mutations tied to Parkinson’s after pesticide exposure: Study (parkinsonsnewstoday.com)

Sheree Ambrosini

Parkinson’s Clinical Lead

PWA PARKINSON’S NURSES SPECIALIST TEAM NOMINATED FOR NATIONAL AWARD

PWA’s Parkinson’s Nurse Specialists Team have been nominated for the 2024 National HESTA Excellence Awards in the category of Team Excellence.

Offering a $60,000 prize pool, the awards highlight the exceptional work by health professionals across the aged care, allied health, community services, and disability services sectors. Nominees (and of course winners) have the opportunity to gain national recognition for their work, which focus on enhancing the health and wellbeing of individuals, families, and communities.

HESTA CEO Debby Blakey said "our healthcare professionals demonstrate leadership, innovation, and a steadfast commitment to improving healthcare outcomes for all Australians daily. Each year, I'm amazed by the outstanding achievements showcased by our winners and finalists”. Best of luck!

DEAR NURSES,

Dear Nurses,

I was recently diagnosed with Parkinson’s and while I’m trying my best to stay positive, I’m facing a lot of challenges every day. One thing that’s really getting me down is how unpredictable my symptoms can be. Some days, I feel okay and can manage my usual activities, but other days even simple tasks become really difficult because of tremors and stiffness. It’s hard to keep things feeling normal when I never know what each day will bring. Can you give me any advice on how to deal with the ups and downs of Parkinson’s symptoms and still feel like I have some control over my life? Any help would be appreciated. Seeking stability

Dear Seeking,

Navigating the unpredictable nature of Parkinson’s symptoms can indeed be challenging, but there are strategies that can help you maintain a sense of stability and control in your daily life.

Firstly, it’s important to establish a routine that works for you. Consistency in your daily activities such as mealtimes, exercise routines, and medication schedules, can help minimise fluctuations in symptoms and provide a sense of predictability.

Additionally, practicing relaxation techniques such as meditation, deep breathing, and yoga can help reduce stress and anxiety, which may exacerbate Parkinson’s symptoms. Finding activities that bring you joy and relaxation, can also help improve your overall sense of well-being.

It’s crucial to communicate openly with your Health Care Team – GP, Specialist Neurologist/ Geriatrician, and Parkinson’s Nurse Specialist, about your symptoms and the challenges you’re facing. They can offer personalised advice about how to manage your symptoms better and improve your quality of life.

Lastly, remember to be patient and kind to yourself. Parkinson’s is a progressive condition, and there may be good days and bad days. Celebrate your victories, no matter how small, and lean on your support network for encouragement and assistance when needed.

Yours

The Nurses

Research News

Perron Institute and PWA - early intervention key to better management of Parkinson’s

Parkinson’s WA is pleased to announce a collaboration that is designed to identify more effective pathways for those diagnosed with Parkinson’s, particularly following the receipt of the news that often changes people’s lives.

The few days and weeks after the initial diagnosis of Parkinson’s can be a challenging time. The time awaiting the next follow up visit to the diagnosing clinician can be lengthy, filled with questions and uncertainties. Several sources have identified widespread dissatisfaction with the experience of receiving the diagnosis of Parkinson’s.

Research has shown that people with newly diagnosed Parkinson’s were more satisfied with the experience of the initial consultation when the diagnosis was delivered with more sensitivity, and quality information was provided with time to ask questions. The pressures on the current health system often mean these simple things are rushed, done poorly or neglected. It is also recognised that when the words “you have Parkinson’s” are spoken, it may be very difficult to take in further information and even if health care providers give information, it is often forgotten. Newly diagnosed people with Parkinson’s may

therefore leave the initial consultation feeling somewhat stunned and only later come up with questions. Parkinson’s WA receives more than 10,000 calls and e-mails per year, many of them from newly diagnosed or their relatives, often in a state of distress.

There can be many ways of reacting to the diagnosis, but negative emotions are common during this time, and the reaction can often be similar to that experienced with grief. This is a potentially vulnerable time, during which misconceptions about Parkinson’s and inaccurate information might amplify distress.

Parkinson’s WA, in collaboration with the Perron Institute are currently working together, combining the expertise of the Parkinson’s Nurse Specialist (PNS) service, specialist physiotherapists and Professor David Blacker, along with input from those living with Parkinson’s to devise a strategy to best support individuals and their relatives/significant others during this time. The intent is to create an early access support clinic that will fill the gap between the time of diagnosis and the next follow up visit, or the first scheduled visit by the PNS.

Professor Blacker is keen to establish a ‘buddy’ system that would see those currently living with Parkinson’s sharing their experience with managing their diagnosis, particularly at the early stages. Those individuals who are interested in being involved as a ’buddy’ should contact Parkinson’s WA on (08) 6457 7373 or info@parkinsonswa.org.au for an initial discussion.

Parkinson’s WA Research and Scholarship Fund EXPRESSIONS OF INTEREST (EOI) INVITED

Parkinson's WA (PWA) is offering opportunities for research funding and scholarships, designed to support advancements in understanding and treating Parkinson's.

PWA continues its active involvement in funding research and strengthening collaborations with research partners to enhance the impact of their work. Scholarships allow for health professional and community involvement in activities that support capacity building and knowledge-sharing.

Prior to a call for submissions for research and scholarship funds, an initial, short form EOI is invited from interested individuals/organisations who would like to pursue a full application. The initial EOI will inform Parkinson’s WA whether the application is aligned with what it sees appropriate to fund.

Research funding and applications for scholarships that have relevant impact on the current needs of those living with Parkinson’s in WA will be highly regarded.

Opportunities

1. Zrinski Research Grant (Benefactor – Zrinski Family Foundation)

Up to $100,000 per year of research project. Full or part funding for projects that are from 1 – 3 years in duration. Longer timeframes will be considered if value is evident.

2. Small Research/Seeding Grants

Up to $6,000 one off, designed to support early-career researchers and students and foster development of future leaders in research.

3. Grant Application for Nurses

To assist in the funding of continuing education for nurses in the field of Parkinson’s and other neurodegenerative conditions.

4. PWA Member Scholarships

For conferences/seminar financial support or courses of study in Parkinson’s for PWA members.

How to Apply with an Initial EOI

Short form EOIs should be sent to the PWA Research Committee (Attention: CEO Yasmin Naglazas) and should be one page addressing the appropriate category referred to above. A formal application will subsequently be requested from researchers/scholarship applicants whose EOIs are thought to have greatest relevance to Parkinson’s WA.

Please email to: yasminnaglazas@parkinsonswa.org.au by Monday 14 July 2024. Yasmin can be contacted via the email address or on (08) 6457 7373 for further information.

Fundraising

2024 Yahava KoffeeWorks Cool Water Classic

We are proud to announce that Parkinson’s WA is the official charity partner for the 2024 Yahava KoffeeWorks Cool Water Classic.

Director of Cool Water Classic Sam Moore says “It is a fantastic opportunity for the event to connect and work with a charity that affects so many West Australians. We are excited to provide a platform for fundraising and awareness for Parkinson’s WA”.

Parkinson’s WA CEO, Yasmin Naglazas “The partnership brings strength to the relationship base of PWA, with the swim being an important vehicle to spread the word of the work of PWA”.

HBF Run for a Reason

“Money donated to PWA via the swim endeavours will assist in the development of programs and services to assist those living with a Parkinson’s diagnosis. A program to further invest in enhancing the skills of nurses supporting those individuals and families living with Parkinson’s is currently being developed and the outcome of this endeavour will be far reaching,” says Yasmin.

Huge congratulations and thanks to the incredible 84 participants who generously nominated Parkinson’s WA as their nominated charity for the 2024 HBF Run for a Reason.

So far over an incredible $17,406 has been raised.

We were touched by the amazing efforts of every runner, walker and friend who contributed to this amazing tally! Your donations are making a real difference, ensuring that no one in WA faces Parkinson’s alone.

Thank you for your amazing support!

A Walk in the Park 2024

A Walk in the Park brings together thousands of people, including those living with Parkinson’s, family and friends. The event creates a sense of belonging, uniting thousands of people who understand and support each other.

The Parkinson’s community is stronger when united, and we’re calling on you to be a part of it. Now is the moment for our resilient community to showcase their collective strength and raise awareness like never before. Mobilise your team, register for the event and receive a free t-shirt!

MONTHLY DONOR PROFILE

Andy Gilmour

What motivated you to support Parkinson’s WA?

I was diagnosed with Parkinson’s in March 2020 at the age of 62. The diagnosis was not a complete surprise to me as I and others had noticed things like tremors in the left side of my body and limited movement of my left arm while walking for a couple of years prior.

Whilst the neurologist was very good at diagnosing the condition and prescribing the medication, there was limited assistance provided to my wife, Sheila and I in reconciling ourselves to this new situation, what changes we may experience and how we may best adapt to our new world.

A friend in passing told us a little bit about Parkinson’s WA and the support they could provide. So we made contact and in October 2020 Fiona Roscoe, the Parkinson’s WA Nurse for our area, visited our home. Fiona stayed about 2 hours, completing a detailed questionnaire but also providing heaps of practical tips and suggestions.

Since then, Fiona has visited us a couple of times – in 2022 and 2023, and again we gained many helpful practical hints and a really strong feeling that we are not on this journey alone.

In 2021, I followed one of Fiona’s hints and participated in the PD Warrior Program, which at the time was also part of a research project

sponsored by Hollywood Private Hospital Research Foundation.

In answering the question “What motivated me to support Parkinson’s WA”, the response is practical support and the feeling that you are not alone on this journey.

What aspects of Parkinson’s WA work resonates most strongly with you and why?

The Parkinson’s WA nurses for the reasons set out above.

What thoughts or sentiments would you like to convey to prospective donors or individuals contemplating supporting Parkinson’s WA?

Parkinson’s can be with you for a long time so having a support organisation like Parkinson’s WA to be on the journey with you is invaluable.

What messages would you like to share with other potential donors or individuals considering supporting Parkinson’s WA?

We are in this together.

The inaugural Irish Open Parkinson’s Golf Championship 2024

The Irish Parkinson’s golf network was formed in 2021 by four Irish golfers with Parkinson’s, who participated in the four nations ( England, Ireland, Scotland and Wales) Parkinson’s sports tournament.

The purpose of the network is to promote social golf for people with Parkinson’s, including those who may have given up golf due to Parkinson’s, and those taking up the game for the first time.

An objective of the network is to create a community of golfers with Parkinson’s who can support each other and encourage people with Parkinson’s to play golf as a form of exercise.

The network has grown to over 50 members, many of whom play together every few months in competitions organized by the network.

At the World Parkinson’s congress in Barcelona, members of the network canvassed several fellow golfers with Parkinson’s from other countries, of their interest in participating in an event to be staged in Ireland, open to all nationalities.

The result was the inaugural Irish Open Parkinson’s Golf Championship, held on April 30th and May 1st at the Mt Juliet Estate in County Kilkenny, Ireland.

40 participants from Ireland, England, Wales,

30 April & 1 May 2024,

Kilkenny

Portugal, Canada and Australia, along with spouses and supporters, gathered at the picturesque estate to play two rounds on one of the top championship courses in Ireland.

Numerous major tournaments including Irish Open championships and Ryder Cups have been held at the course designed by Jack Nicklaus which opened in 1991. The parkland course with lush rough and numerous water hazards is a challenge for the top professionals, so not unexpectedly it was a difficult task for amateurs with Parkinson’s, in cold and wet conditions.

For many, simply completing the two rounds was an achievement, but there was still some excellent golf, with the winner scoring 39 and 37 Stableford points for the two rounds.

One feature was the inclusion of several spouses playing and supporting their partners and the camaraderie amongst the golfers.

Golfers co-operated to ensure they could safely compete. For example several players had poor balance, and when one golfer was playing a shot from a precarious position next to a hazard, the playing partners stood nearby to ensure he didn’t topple backwards into the freezing water. Players were also quick to assist those who had trouble bending to retrieve the ball from the hole. The pace of play was inevitably slower than usual, but this was compensated for by longer than usual times between playing groups and

Fundraiser Spotlight - Liz Curtis

How long have you been with Parkinson’s WA?

This is my 3rd year of fund raising for Parkinson’s Western Australia.

What part of fundraising for Parkinson’s WA do you love the most?

I love the part of fundraising being that I may be able to help some of our special people in a small way, to make their day with the assistance of the fabulous Parkinson’s nurses provided by Parkinson’s WA. My fundraising is a small token toward the vital funding required.

an understanding by all of the extra difficulties faced by golfers. Several players with festination appeared to be running after the ball at times. In contrast, there were some who had to miss a hole or two due to freezing. The first hour of each round had most participants experiencing freezing, not of the Parkinsonism type! There were some beautiful patches of sunshine, particularly during the second round which everyone appreciated.

It was encouraging and inspiring to see that golfers with relatively advanced Parkinson’s ( H & R of at least 3), could get round a difficult course in tough conditions and still have a great golfing experience.

It was a joy to play golf with others who understood the extra difficulties Parkinson’s adds to an already difficult game. The bonus of this included

So, gathering people for a morning tea is a very rewarding feeling, and I am strongly supported by my cycling club and friends.

Who or what inspired you to fundraise for Parkinson’s WA?

I was inspired to fundraise by my dear friends Daniel and Cynthia, who had Parkinson’s and sadly have both passed. I still have a few friends with Parkinson’s.

Favorite place you’ve travelled?

My favourite place I’ve travelled is New Zealand on a Masterpiece Tour. It was amazing.

Describe what a perfect day would look like for you?

A perfect day for me would be to see everyone kind and happy and healthy.

Share a fun fact or your favourite quote: Always be kind and compassionate.

feeling less time pressure, and it was easier to remember to take medications when others in the group were doing the same. It was rewarding to exchange tips about playing golf with Parkinson’s.

It was delightful to see spouses helping their partners to get around the course.

A fantastic bonus was the opportunities for partners to meet and exchange experiences. Most participants and partners stayed in the fabulous on-course accommodation. This provided a great chance to mingle and socialize. The spouses reported finding it tremendously helpful to meet others in similar situations.

The dinner and presentation night was an emotional time, with heartfelt thanks for the great efforts of the organising team and appreciation by all of the positivity of the experience.

Plans are already underway for another, larger event, possibly in 2027 at another quality venue. More information; irishparkinsonsgolfnetwork@ gmail.com

Professor David Blacker - PWA Board Director (PS - I was happy to finish 4th)

TWILIGHT SAILING

Twilight Sailing has become a wonderful tradition at Parkinson’s WA with the most recent session being our sixteenth year of collaboration with South of Perth Yacht Club. The only thing which disrupted our continuous summer sailing record was Covid-19.

Twilight sailing was the brainchild of the late Peter Willmott who was a long term member of South of Perth Yacht Club and a dedicated sailor in addition to having a long and respected career in insurance in Perth. When Peter was diagnosed with Parkinson’s in 1999 he reached out to the Nurse Specialist service for education and guidance. He soon became a popular and valuable member of our organisation and joined the Board which he served for many years. In fact it was Peter’s humour which generated the

Dear Nurses’ segment of our newsletters when he queried how he could stop his tremor causing red wine spills on his white carpet!

Peter wanted to share his love of sailing with as many people as possible and approached the South of Perth Yacht Club to host an evening for people with Parkinson’s. This has grown into one of our most popular social events when people forget their symptoms and relax on our beautiful Swan River. Peter passed away in 2018 but every year we raise a glass to him on the river he loved best.

Janet McLeod

Peter Wilmot Sailing

Peter with his family and friends from the South of Perth Yacht Club

Collaboration with Brightwater to Build Capacity

Parkinson’s WA and Brightwater have entered into an agreement to establish a trial and evaluation for a 10-week experiential learning and educational program that aim to better equip registered nurses (RNs) with the care of individuals living with Parkinson’s. The trial program seeks to capacity build and allow program participants to strengthen their professional networks with the assistance of Parkinson’s WA.

The program participants will be RNs working in the neurology/Parkinson’s area (hospital, aged care or community-based) who require further development of their skills. Those working in the aged care sector may have residents living with Parkinson’s in the longer-term residential care setting, either facility-based or in the community.

For two days each week, over ten weeks, program participants will spend one day per week undertaking a relevant course through the Australian College of Nursing (ACN) and the other day out in the field working with Parkinson’s WA experienced Specialist Parkinson’s Nurses.

Providing valuable experience that includes clinical supervision, modelling, coaching and mentoring will underpin the experiential learning aspect provided by the Parkinson’s WA Specialist Parkinson’s Nurses.

The ACN course will give participants a strong grounding in a Parkinson’s diagnosis, treatment and management. This postgraduate unit of study is designed for health professionals who care for people diagnosed with both typical and atypical Parkinson’s, and provides participants with the opportunity to extend their knowledge of this specialty area. The unit content explores the epidemiology, anatomy, physiology, motor and non-motor clinical features of Parkinson’s. Participants will examine contemporary assessment and management techniques, while

critiquing therapeutic approaches to care at all stages, with reference to best practice guidelines. Participants will also examine pertinent psychosocial issues relating to the care of a person living with Parkinson’s and their family and carers. Multidisciplinary consultation and referral pathways, legal and ethical issues and advances in care, will also be considered.

The registered nurse, as a program participant, will take on to take on an ‘observer’ role when out on fieldwork and there is no requirement for them to initiate any aspect of the clients’ care plan or contribute to client medical notes. This is to ensure they have the most ideal learning environment. They will be under the direct supervision of a highly qualified Parkinson’s Nurse Specialist.

Our Parkinson’s Nurse Specialist (PNS) team is the interface between the Parkinson’s community and the medical and psychosocial systems within Western Australia. With our organisation being 40 years old, the nursing service celebrating 25 years of continuous, expert nursing care to a very high standard. The level of enthusiasm and the knowledge demonstrated by the nursing professionals has established itself over that time. They are often considered the most experienced team of Parkinson’s Nurse Specialists in WA. This partnership program with Brightwater is a perfect opportunity to share our skills and knowledge.

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World Parkinson’s Day contd...

Fundraising Events

The Collie support group organised a stall at Collie Central, where they raised both awareness and funds for their cause. Additionally, a heartfelt thanks goes to Regis Resources for graciously hosting a morning tea at their workplace.

In the News

Matthew shared his Parkinson’s story with Channel 9 News, which aired on World Parkinson’s Day.

Matthew was diagnosed in 2018 following an unexpected tremor in his left thumb and forefinger.

His story has shone a spotlight on Parkinson’s, raising crucial awareness. Matthew, we sincerely thank you for your bravery and advocacy.

To view the story - https://tinyurl.com/ssx24b67

Spreading the word at the Niche

Our CEO Yasmin visited our colleagues from the Centre for Neurological Support celebrating World Parkinson’s Day with cupcakes.

Inspired by World Parkinson’s Day?

There are lots of ways you can help us throughout the year. From volunteering, to registering, for A Walk in the Park, or hosting your own fundraiser. Contact our office to get a copy of Community Fundraising Guidelines. Together, let us shine a light on Parkinson’s and make it a priority in our communities.

Support Group Leaders Development Day

Our Support Group Leader’s Workshop gave us a chance to check in with the Leaders, exchange ideas, support one another and make plans for the future.

We heard from our Clinical Nurse Manager, Janet McLeod, on an update on Parkinson’s medication. Janet also reflected on the history of the support groups.

We then shared what is working and not in each of our groups as we all learnt from each other. We had a policy update from Office Manager Toby Gummer, before breaking to have lunch together

We were delighted to have the team from House of Hobby come and get our creative juices flowing as we took part in a paint pouring workshop, creating a board and coasters for each of our leaders to take home. CEO Yasmin expressed her appreciation for the

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Phil

Orchard’s story of life with Parkinson’s and hope for the future

People I meet who know I have Parkinson’s tend to think I don’t look too bad for my age, and often think ‘there’s not much wrong with him’. Their instant judgement on seeing me for the first time is superficially true, but it’s not quite like that on the other side.

The casual observer doesn’t see the bit that has me thrashing about in bed at night because my legs won’t settle down. Or when my wife, Isabel, has to wake me because I’m having a nightmare and shouting out loud. The mix of Parkinson’s drugs that keeps me stable for reasonable periods has these unwanted side effects.

Similarly, they don’t see my morning struggle to get out of bed and Isabel trying to dress me because my limbs won’t react. They don’t see me shuffling around the house until the first day’s drugs kick in and I can make a reasonable attempt at shirt buttons and shoelaces.

Isabel often says, ‘It’s like waking up with an old man who gets younger through the course of the day’. Unfortunately, it doesn’t last, and she goes to bed with the same old man she dressed in the morning.

I also have dyskinesia. It doesn’t show so much when I’m standing up, but when I’m sitting down, my legs are constantly moving. When I get freezing of my gait in a shopping centre and people stop and stare, thinking I’m drunk, I simply tell them why.

I could go on, but the truth is Parkinson’s is an insidious and destructive condition that saps my energy, independence and freedom of movement.

Throughout my time with Parkinson’s I have cycled, played tennis and golf and in late 2021, learnt to box through an exceptional exercise research program put together by the Perron Institute and Edith Cowan University with the help of professional fitness trainer Rai Fazio, a former Golden Gloves champion.

The Fight-PD high intensity, non-contact boxing has improved my upper body strength, flexibility,

balance and cognitive skills.

I have nothing but praise for those who devised, planned and executed this program. It has undoubtedly slowed the progress of my Parkinson’s.

Parkinson’s doesn’t take away your life, but it takes away some of the pleasures of living.

Fighting the battle day in day out, week in week out and year in year out does get tiring.

I’m sure researchers and scientists will come up with a cure for Parkinson’s – maybe not in my time, but maybe in my grandchildren’s time.

However, research costs money, and without institutions like the Perron Institute and its teams of researchers, we would be back in the Dark Ages.

As long as we have people dedicated to finding a cure, people like me can live in hope.

Philip Orchard AM AFNI CMDR RAN (Ret’d) has lived with Parkinson’s for 15 years. He is a former Commander Officer of HMAS STIRLING, the Royal Australian Navy’s largest operational establishment, and after retiring from a naval career spanning 34 years, he served for five years as the Head of the British Consulate in WA and five years as CEO of RSLWA before retiring due to his Parkinson’s. He is currently the Chair of RSLWAs Trustees and a Director of Brain Waves, a not-for-profit organisation working with the Perron Institute to raise money for research. In May 2023 he was instrumental in raising money and profile for the Indian Ocean Row 23.

He is a recipient of the Member of Australia (AM) and was awarded the National Australia Day Council Medallion for 2020 for his services to veterans and their families.

In late 2021, he learnt to box via the Fight-PD research program at ECU developed by the Perron Institute’s Medical Director Professor David Blacker AM and golden gloves boxing champion Rai Fazio.

Isabel and Phil Orchard

Parkinson’s Support Groups New Support Group!

We are thrilled to announce the launch of our newest Support Group in MELVILLE!

Join us every first Wednesday of the month, starting June 5th, at 9:30 am for a warm and supportive community gathering.

Venue: Kim Gidden MLA Office - Suite 1, 30 Ardross Street Melville (corner of Kintail Road and Ardross Street in Applecross Village)

Entry off the street is a single glass door – look for the yellow smiley face. There is no formal reception area so please proceed to the meeting room on the left. Support Group Contact - Sue Mason

PARKINSON’S NEWLY DIAGNOSED SEMINAR

for people diagnosed within the last 5 years Tuesday 3rd September with Dr. Wayne Yau

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well-organised session, noting the valuable content and insightful discussions that will greatly contribute to their long-term planning efforts of Parkinson’s WA. She also highlighted the joy of spending time with the Support Group Leaders, all of whom generously volunteer their time and efforts.

Parkinson’s WA Board President Gary Steinepreis stopped by to meet the community, which gave them an opportunity to discuss matters with him personally.

11

Aberdare Road, Nedlands WA 6009

Phone: (08) 6457 7373

Email: info@parkinsonswa.org.au

www.parkinsonswa.org.au

Gary shared “I really enjoyed meeting some of the Support Group Leaders who provide a great service to the PWA community. We greatly appreciate their commitment and support.”

Thank you to everyone who attended, had the courage to share their story and struggles with us and allow us to celebrate them and all their contributions to the Parkinson’s community.