Celebrating 40 years!
We are proud to have been improving the quality of life for West Australian’s living with Parkinson’s for 40 years.
This milestone reflects the dedication, hard work, and unwavering support of everyone involved in our journey.
Our story began in 1978 when Morley resident Mary Jackson, feeling isolated after her diagnosis, reached out to Graham Maybury on nighttime radio, inviting others in similar situations to connect. This led to the formation of local support groups that ultimately united under Parkinson’s WA.
Founded on the belief that no West Australian should face Parkinson’s alone, we invited our community to share their personal stories, featured in the centre of this newsletter.
To celebrate our 40th Year we asked our community to share their Parkinson’s story with us and you will see some of these featured in the centre of our newsletter.
Join us in celebration by hosting a Morning Tea with family and friends— details can be found on page 18.
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
When I reflect on the activities that we have been involved in at Parkinson’s WA, I understand why 2024 has felt so busy! Of significance, it is with great pride and a high degree of enthusiasm that I report on the Board of Director’s having concluded the review of the Parkinson’s WA current Strategic Plan.
As Parkinson’s WA continues to evolve and adapt to the needs of those living with Parkinson’s, the Board of Directors engaged in a critical review of our strategic direction during 2024. They reviewed recent initiatives, current challenges, the existing Strategic Plan, and our organisation’s risk profile. Key areas of discussion included our Vision and Mission (now renamed Aspiration and Purpose), financial sustainability, service delivery models, and potential expansion to meet the increasing demand.
Parkinson’s WA stands at a crossroads where evaluating our Aspiration and Purpose was paramount. As a peak body with direct service delivery, particularly in areas not fully covered by WA Health Department contracts, we need to reassess whether our current mix of functions aligns with our core purpose. The Board deliberated on whether our Aspiration and Purpose adequately reflected our role in the community and if adjustments were needed to better fulfill our mandate.
The financial health of Parkinson’s WA is a key concern, especially in the context of our investment in fundraising, donations, and bequests. The Board considered how much of our organisational revenue should come from these sources and whether an increased investment in growth and transformation is warranted. Over the next 2-3 years, setting and achieving key performance indicators (KPIs) will be crucial in substantiating any financial investment. Identifying these KPIs and metrics will guide our strategy to ensure long-term sustainability.
With the growing demand for our services, it is essential to examine how our organisation’s structure might need to adapt. This includes evaluating whether our current service delivery model or ‘Model of Care’ remains effective. The Board will continue the discussion with our management team on the potential changes to accommodate increased demand while maintaining quality and efficiency in service provision.
Recruiting highly specialised Parkinson’s nurses remains a challenge. We understand that we need to develop strategies to address workforce shortages and create contingencies for the lack of specialists. Effective workforce planning is crucial to ensure we can meet the growing demand.
As Parkinson’s WA navigates these critical issues, our Board’s guidance is essential in shaping the future direction of Parkinson’s WA. By addressing these areas thoughtfully, we aim to enhance our ability to support individuals living with Parkinson’s and ensure
our long-term impact and sustainability.
Our annual Christmas Appeal will soon be distributed, and we once again look forward to your unwavering support. Due to the generosity of our community, it has allowed us to continue to offer the highest level of support and care. Thank you in advance for contributing again this year.
STRATEGIC PLAN 2024 - 2029
STRATEGIC OBJECTIVES
www.parkinsonswa.org.au 1 2 3 4 5
As we wrap up the year, I want to express my heartfelt gratitude for your incredible commitment, support and friendship throughout 2024. Being involved with all of you has been one of the great joys.
Adj Professor Yasmin Naglazas Chief Executive Officer
From the Nurses’ Desks
Time seems to be moving faster and faster this year, with Christmas once again just around the corner. 2024 has been an action-packed year, marked by the bittersweet retirement of Janet McLeod in May after 26 years with the organisation. We were delighted to see her at a couple of events, such as the HESTA morning tea recently.
We are thrilled to announce the Janet McLeod Health Professional Award, which will be awarded annually to a health professional who makes an outstanding contribution to clinical excellence, leadership, education, and culture in caring for individuals living with Parkinson’s. This award recognises those who advocate for evidence-based practice, focus on valuebased support, and provide safe, quality, and compassionate patient care. It also honours those who show commitment to supporting, empowering, and upskilling their colleagues.
The HESTA awards were an exciting time for all. While this year was not our year, it was a privilege to be announced as finalists and to take part in
the awards ceremony. Thank you to everyone for your support.
The latter half of this year saw two significant events. First, we welcomed Curtin University medical students, who joined us for their clinical placements. Many of you would have met them while they were out and about with the nurses. Additionally, we were pleased to have Roshni Bundhun, from Brightwater, as the first participant in the Parkinson’s WA Experiential Learning and Development course. Thank you again for supporting the education and upskilling of WA’s health professionals.
A Walk in the Park was a resounding success this year, enjoyed by all the nurses. We couldn’t have asked for better weather and support from the community. Photos from the event are available on our Facebook page for everyone to enjoy. We look forward to seeing everyone at the upcoming seminar in November, and the twilight sailing event in February. These events promise to be informative and enjoyable, and we hope to see many of you there!
Nurses’ Updates
Study Reveals Major Gut Health Issues in Parkinson’s Patients
A recent study has found that people living with Parkinson’s have significant problems with their gut health compared to those without the condition. Researchers in Canada studied the stool samples of 197 people with Parkinson’s and 103 healthy individuals to understand the differences in their gut bacteria.
The results showed that people living with Parkinson’s have fewer beneficial bacteria that help reduce inflammation and more harmful bacteria. These changes were especially noticeable in people whose symptoms affected both sides of their body equally.
This study suggests that the health of the gut might play a role in how Parkinson’s progresses. The researchers believe that these gut bacteria
changes could be linked to the worsening of motor symptoms over time.
Overall, this research highlights the importance of looking at gut health in Parkinson’s. By understanding these changes, scientists hope to find new ways to slow down the symptoms and improve the quality of life for people living with Parkinson’s.
Study finds large-scale disruptions in Parkinson’s gut microbiome (parkinsonsnewstoday.com)
Did You Know
Managing Medications with Technology
During a recent patient visit, we had an enlightening discussion about medication alerts on mobile devices. One patient mentioned, “Oh, that’s all in my health data on my phone.”
He takes a certain medication six times a day along with other medications—all conveniently programmed into his Health app, thanks to his wife. His Apple Watch alerts him when it’s time to take his meds, and he logs his doses in the app. At the end of the day, he receives a report showing whether he took his medications on time.
The app also allows him to share his medication list, making it easier to keep track of his health.
We believe this technology could be a fantastic resource for many of our patients.
https://support.apple.com/en-gb/guide/iphone/iph811670c81/ios https://support.apple.com/en-au/105064
DEAR NURSES,
Dear Nurses, I’ve been having a hard time focusing on more than one thing at a time. Even simple tasks become overwhelming when I try to do them simultaneously. This has been quite frustrating, and I’m not sure why it’s happening. It feels like my brain just can’t keep up with juggling multiple things at once, and it’s starting to affect my daily life.
Could you explain why multitasking is so challenging for me? Are there any strategies or tips that might help me improve my ability to handle multiple tasks? I would really appreciate any advice you can offer.
Thank you for your assistance.
Sincerely, Multi-Tasked Out
Dear Multi-Tasked Out,
Thank you for reaching out with your question. It’s not uncommon for people living with Parkinson’s to experience difficulties with multi-tasking. Parkinson’s can affect various cognitive functions, including attention and executive function, which are crucial for managing multiple tasks simultaneously.
The brain’s ability to switch between tasks or handle several tasks at once can be compromised due to the changes in dopamine levels associated with Parkinson’s. This can make it challenging to concentrate on more than one thing at a time.
Here are a few strategies that might help:
1. Prioritise tasks: Focus on one task at a time, starting with the most important. Breaking tasks into smaller, manageable steps can also be beneficial.
2. Create a Routine: Establishing a daily routine can help reduce the cognitive load and make it easier to manage tasks.
3. Use Tools: like planners, alarms, and reminders to keep track of tasks and deadlines.
4. Take Breaks: Allow yourself regular breaks to rest and recharge, which can improve overall concentration and productivity.
If these strategies don’t seem to help, it might be worth discussing your concerns with your specialist. They can possibly adjust your treatment plan to better manage these symptoms.
Yours
The Nurses
Message from the Board Chair
As I reflect on my first year as a Director of the PWA Board, I wish to thank my fellow Directors, CEO Yasmin Naglazas and all the staff for their contribution to the business and support.
Parkinson’s WA is powered by our Parkinson’s Nurse Specialists and active volunteer Support Groups with the operational team providing critical support and drive.
Parkinson’s WA provides guidance and services to people living with Parkinson’s, not just the person diagnosed but includes their partners, carers, family and friends. We change lives and build capacity. From the day of diagnosis, individuals diagnosed with Parkinson’s and their loved ones need to know that Parkinson’s WA is by their side and that the organisation will be there now and also into the future.
We have worked and agreed on a revitalised Strategic Plan 2024-2029 along with a very clear roadmap to ensure a sustainable future. Our purpose is to support and empower those impacted by Parkinson’s and associated conditions in WA and we aspire to provide access for all to the highest standards of support and
Gary Steinepreis
care regardless of post code. The Board and staff were engaged in the Strategic Plan review and we have set strategic objectives to support our aspiration and purpose.
In WA, it is estimated that 15,000 individuals currently have a diagnosis of Parkinson’s with as many as an additional 45,000 impacted, particularly if they are the primary carer. The new Strategic Plan helps to reinforce Parkinson’s WA’s Aspiration and Purpose and we are committed to delivering outcomes for the Parkinson’s community that are based on the best value for money for Government while ensuring that people have access to the right services when they need to enable better community outcomes.
We wish to grow our services, membership and develop new initiatives and a sustainable funding model to achieve the strategic objectives and goals of our Strategic Plan.
The Board has changed with four long standing members retiring (John McDonald, Dr Don Bolto, Alastair Hope, Alan Gray) and five new appointees made (Gary Steinepreis, Dr David Blacker, David Fisher, Kate Roberts, Geoff Waldock) with a broad range of experience in medical, finance, corporate governance and media relations. I thank all the Board, past and present, for their volunteer work and expertise and guidance.
We also have had a change of management with Janet McLeod retiring after 25 years of service and the appointment of Sheree Ambrosini as Clinical Lead. Our nurse specialists have been recognised as industry leaders and we were selected as a finalist in the Team Excellence Category at the National HESTA Awards.
As we continue to deal with challenges in funding which is due to increased costs and demand for our services, we thank all our supporters and donors including a number of bequests we have received.
Thanks again for your support as members and friends of Parkinson’s WA.
Gary Steinepreis Board Chair
Yoga for Parkinson’s
In 2022, I became a certified yoga teacher with a mission: to make yoga accessible for those who might feel it’s out of reach due to age, health, or disability.
This year, my husband, Professor David Blacker, and I launched the Introduction to Yoga for Parkinson’s program. Thanks to support from Parkinson’s WA, which helped fund our equipment, and the Niche for providing us with space, we successfully completed a pilot program over eight weeks, welcoming six participants. Our goal was to empower individuals with Parkinson’s to gain the confidence and skills needed to join regular community yoga or beginner classes.
The program began with an intake assessment that included evaluations of movement and balance, as well as an open discussion with Professor Blacker about Parkinson’s. We also gathered comprehensive health histories to tailor the experience for each participant.
At the end of the series many participants commented on the improvement in their mental health, a sense of belonging, as well as improvements to posture and flexibility, and have started incorporating parts of the practice in dayto-day life.
We recently kicked off our second series with a smaller group of four, allowing for more
personalised attention.
In December, we’ll be traveling to Shepparton for a Parkinson’s conference titled Parkinson’s Disease - A Holistic Overview, where I will present our work and lead a chair-based yoga session for attendees.
PWA Members are encouraged to register their interest if they would like to be part of the 2025 intake.
Looking ahead, we aim to continue this valuable program into 2025.
Kirsten Blacker Yoga Instructor
Research News
Perron Institute researchers contributing to Parkinson’s genotyping study
Parkinson’s disease, the second most frequent neurological disorder after Alzheimer’s, is mostly sporadic but in about 14 per cent of cases overall, it is monogenetic – caused by a mutation in a single inherited gene.
Western Australian researchers are participating in a national study of monogenetic forms of this disorder, led by Neurosciences Research Australia and the Garvan Institute. Other organisations involved include the University of New South Wales, University of Sydney, Macquarie University and Perron Institute.
Professor Sulev Koks, Head of Genetic Epidemiology Research at the Perron Institute and Centre for Molecular Medicine and Innovative Therapeutics at Murdoch University, is jointly leading the WA research with Perron Institute Clinical Neurologist Dr Wayne Yau.
“The study sets out to develop a comprehensive characterisation of monogenetic Parkinson’s
Prof Sulev Koks and Dr Wayne Yau MonoPDAus 2024
in Australia,” Professor Koks said. “The focus is on improving diagnosis, achieving better understanding of disease characteristics, and progression and assessing the cost effectiveness of genomic testing.
“Establishing an Australian monogenetic Parkinson’s patient registry that will enable rapid recruitment to future clinical trials is another aim,” Professor Koks said.
The Monogenetic Parkinson’s Disease Australian Initiative, funded by the Australian Government’s Medical Research Future Fund, harnesses the broad reach of the Australian Parkinson’s Genetic Study (APGS) and the sequencing power of the Global Parkinson’s Genetics Program.
APGS participants with early-onset or familial PD will be offered participation in the study, supplemented by direct recruitment which is already underway.
A poster on the Monogenetic Parkinson’s Disease Australian Initiative was presented at the Annual Scientific Meeting of the Australian and New Zealand Association of Neurologists in Adelaide.
Article supplied by the Perron Institute for Neurological and Translational Science
Fundraiser Spotlight - Grace Dow
Year 9 student Grace Dow has chosen to impact the lives of those living with Parkinson’s as part of a Community Service, through The Rite Journey program at St Stephen’s School.
With her grandparents as mentors— both of whom have experience in the medical field—Grace felt inspired to support the Parkinson’s community. In August, she participated in the Kingsley Support Group, where she and her grandmother, Margaret, prepared and served afternoon tea, engaging
with members and Parkinson’s WA CEO Yasmin Naglazas. Additionally, Grace hosted a morning tea for World Parkinson’s Day at Osborne Park Hospital on April 11th, further demonstrating her dedication to raising awareness and support.
Building Capacity in Aged Care
Parkinson’s WA and Brightwater have entered into an agreement tand have now completed a trial and evaluation for a 10week Experiential Learning and Development Program that aims to better equip registered nurses (RNs) with the care of individuals living with Parkinson’s. Roshni Bundhun was our first candidate from Brightwater Inglewood.
What motivated you to pursue the Parkinson’s program at Parkinson’s WA?
I had been contemplating furthering my studies to enhance my skills and knowledge, but I wasn’t quite sure where to begin. When the opportunity to participate in the Parkinson’s program presented itself, I felt it was the perfect starting point. After completing this course, I am now committed to pursuing the remaining units required for a Graduate Certificate in Aged Care Nursing.
Has this advanced study heightened your interest in working within the Parkinson’s field?
Absolutely. This program has significantly heightened my interest in Parkinson’s care, and I am eager to stay engaged with the latest
developments in this field. I am also actively exploring opportunities where I can share my experiences and contribute to improving care for individuals with Parkinson’s disease.
How do you anticipate the Parkinson’s program will influence your professional environment, and in what ways do you plan to implement your learnings at work?
The Parkinson’s program will significantly influence my professional environment by enhancing the level of care I can offer to clients living with Parkinson’s. I plan to implement my learnings by educating my colleagues on best practices for managing Parkinson’s, ensuring that care is individualised and holistic. I will also be more proactive in addressing the needs of both patients and their families, offering them the support and guidance they need.
How do you plan to apply the insights and techniques learned from the Parkinson’s program in your daily work?
I plan to incorporate the knowledge and techniques I gained into my daily work by improving patient assessments, enhancing care planning, and offering more tailored interventions for individuals with Parkinson’s. I also aim to improve communication between healthcare professionals, patients, and their families to ensure comprehensive care. Lastly, I will advocate for more interdisciplinary collaboration to ensure that every patient receives the best possible care.
Would you recommend this program to your colleagues?
Yes, without hesitation. I have already begun recommending this program to other nurses, as it has been an incredibly enriching experience that I believe would benefit any healthcare professional working in aged care.
Sheree Ambrosini with Roshni Bundhun
40 Stories for 40 Years
Val shares, Parkinson’s WA played a pivotal role in their lives after Geoff’s diagnosis. After Geoff’s passing Val’s involvement with Parkinson’s WA remains constant, proof of her constant gratitude for the support they provided her family
Cheryl navigates life with Parkinson’s, finding strength in her passions and community support.
Tanya’s life took an unexpected turn when she noticed a tremor in her right thumb and a slight limp in her right leg. “Parkinson’s WA was my Savior, it gave me knowledge and hope”
Andrew Gilmour’s journey with Parkinson’s began in March 2020, a diagnosis that came as no complete surprise after noticing symptoms like tremors and limited movement in his left side for a couple of years prior. The first sign of trouble came when Tor’s left big toe started curling under and causing her pain. Tor’s journey with Parkinson’s has been challenging, but she faced it with determination and resilience.
A typical day for Steve now revolves around managing his condition, with morning walks and exercise being key components.
Irena ‘Parkinson’s made me realise I am not invincible. I have good days and bad days. On most days, the left side of my body is affected. It is slow and becomes quite stiff.’
Gervase’s journey with Parkinson’s began with a tremor in his thumb, but it led him to embrace a slower, more balanced life filled with family, health, and a renewed sense of purpose.
Sue, at nearly 73 years old, was diagnosed with Parkinson’s disease five years ago. Despite initially noticing vague symptoms, she never suspected anything was seriously wrong until her diagnosis.
Life took a turn when Bernard decided to retire and move to Western Australia with his wife, marking a new chapter in their lives. However, what was thought to be a relaxing retirement was overturned by his Parkinson’s diagnosis.
Willem’s eleven-year journey with Parkinson’s shows how strong and hopeful people can be. Despite the challenges he faces, he finds joy, strength, and inspiration in the support for his loved ones and the simple pleasures of life.
Mary has been Philip’s unwavering pillar of support. Her ongoing encouragement and care have been instrumental in helping Philip navigate the complexities of Parkinson’s. Together, they continue to cherish family moments and enjoy their shared interests in golf and watching football.
Dave, a 61-yearold living with Parkinson’s, has found an unexpected ally in his fight against the progressive neurological disorder: boxing.
Kaye’s connection with Parkinson’s WA began in 2013, following Robert’s Parkinson’s diagnosis. Kaye found great support through Parkinson’s WA, despite the loss of Robert in 2020, Kaye continues to run the Rockingham Support Group.
Read more about each of these clients on our website - https://www.parkinsonswa.org.au/stories
We would love for you to share your memories of Parkinson’s WA with us and if you would like to share your story, please email marketing@parkinsonswa.org.au
Advancing Parkinson’s WA: Key Steps in ICT Strategy and Digital Transformation
Parkinson’s WA has recently completed the first phase of a comprehensive review of its Information, Technology, and Communications (ICT) strategy. This review marks a significant milestone in the organisation’s journey towards a more robust and future-ready digital infrastructure. As PWA transitions into the next phase of this strategic initiative, a series of critical steps and considerations have been outlined to ensure continued progress and effectiveness.
The forthcoming phase of the project, Phase 2, will focus on developing a Digital Strategy to guide PWA through the complexities of technological advancement and integration. This next step is pivotal in aligning PWA’s digital tools and platforms with its strategic goals and operational needs.
1. Cloud Migration and SharePoint Implementation
A key component of Phas 1 involved deciding how to best implement cloud services and SharePoint. PWA has procured external assistance to coordinate a governance plan for these initiatives, collaborating with service provider Affinity. This will involve:
• Governance Plan Coordination: Ensuring a smooth migration to the cloud and SharePoint, including the necessary internal and external support.
• Training Implementation: Developing and executing a training process to equip staff with the skills needed to effectively use the new systems.
It is important to note that opting for SharePoint provides advanced functionality compared to a more basic cloud file storage solution. Although the latter might require less internal effort and can be managed reasonably effectively, it would not offer the same level of features and integration that SharePoint delivers.
2. ICT Steering Committee Formation
To oversee the development and implementation of the Digital Strategy, PWA has established an ICT Steering Committee. This committee will:
• Establish a Governance Framework: Develop a governance framework and Terms of Reference (ToR) to guide the committee’s operations.
• Have Board Representation: Include Board members to ensure alignment with organisational priorities and strategic oversight.
The ICT Steering Committee will play a crucial role in steering the organisation through the complexities of digital transformation, ensuring that strategic objectives are met and that governance standards are upheld.
3. Addressing Immediate Challenges
Several immediate challenges are being considered to facilitate effective SharePoint adoption and overall ICT improvement:
• Cyber Security Awareness Training: Implementing training programs to enhance staff awareness and preparedness against cyber threats. This will build on work completed in 2023.
• Teams Phones Implementation: Integrating Microsoft Teams for communication and collaboration.
• AI Clinical Notes: Exploring the use of artificial intelligence to streamline clinical documentation processes. All this needs to be done with care and due process.
These initiatives represent some of the “lowhanging fruit” that can provide quick wins and pave the way for more extensive digital enhancements.
4. Business Continuity and Disaster Recovery
A robust Business Continuity and Disaster Recovery (BC/DR) framework is essential for minimising risks and ensuring organisational resilience. The ICT Steering Committee will work on reusing the current framework:
• Policy Framework Development: Establishing more comprehensive policies and procedures to handle disruptions and ensure the continuity of critical services.
5. CRM Management Review
Finally, PWA will explore the future of managing its two Customer Relationship Management (CRM) systems—Microsoft Dynamics and Salesforce. This evaluation will focus on:
• System Integration: Assessing how best to integrate or streamline these platforms to optimise functionality and efficiency.
• Strategic Alignment: Ensuring that CRM management aligns with the organisation’s broader digital strategy and operational needs.
The completion of Phase 1 of the ICT
Update from ParkC
2024 has been a busy and rewarding year for ParkC. Dr Emily Corti, who you may know from having taken part in ParkC studies, graduated from her PhD. Dr Emily is now a permanent member of the academic staff at Curtin University and is continuing her research in Parkinson’s with ParkC.
PhD student Kara Simpson has recently joined ParkC as a research assistant, running our PWAfunded study exploring whether brain stimulation can improve thinking skills in people with Parkinson’s.
Assoc Prof Naomi Cocks and her team have collaborated with people with Parkinson’s and their partners to develop a website providing strategies for use in conversations. PhD student Ramishka has been running focus groups exploring how people with Parkinson’s and their partners navigate conversations. This has led to a co-designed conversation treatment program that will be trialled in the Parkinson’s community in 2025.
Honours student Eve Morecroft has been running an on-line project examining the impact of body image on social engagement in those with Parkinson’s. Boadicea Vincent, Lisa Montoccio, and Emma Balatti have recently completed their honours project exploring the experiences of people with Parkinson’s communicating with
strategy review is a significant achievement for Parkinson’s WA, setting the stage for a transformative journey in Phase 2. By focusing on cloud migration, SharePoint implementation, governance, immediate ICT improvements, and CRM management, PWA is well-positioned to enhance its digital capabilities and continue delivering exceptional support to those living with Parkinson’s. The upcoming steps are crucial in driving PWA’s digital evolution and ensuring that the organisation remains at the forefront of technological advancements in the healthcare sector.
health professionals. The findings of both of these honours studies will be made available soon on the ParkC website. We still need people with (and without) Parkinson’s to take part in our research. You can find out more by going to the ‘Current Research’ tab at our website https://parkc.co/ or by emailing us at parkc@curtin.edu.au. We continue to present our research at support groups to ensure we involve the Parkinson’s community, and we thank you all for your ongoing support.
2024 A Walk in the Park
A Walk in the Park is an event that always seems to arrive quickly, but it’s something the Parkinson’s WA team pours their heart and soul into year after year.
For us, it’s a meaningful way to remind our Parkinson’s WA community that they are not just statistics or numbers, they are valued, and they are never alone. This annual gathering creates a space where those living with Parkinson’s can be surrounded by others who understand their journey, as well as an overwhelming sense of love and support. It’s a day where we can celebrate them, bring hope to their daily struggles, and show them just how much they are cared for.
The 2024 Walk in the Park was all that and more. The weather was perfect with blue skies, bright sunshine, and bubbles filling the air, while the Perth Charity Band played in the background, adding to an atmosphere that was both incredible and unforgettable. The day kicked off with our wonderful MC, Tina Alteri, warmly welcoming the Parkinson’s WA community to a bright, beautiful day at A Walk in the Park. She set the tone, introducing the schedule and what everyone could look forward to. Families and friends gathered throughout the park—old friends reuniting and groups rallying to support their loved ones with Parkinson’s.
To get our community warmed up for the walk, Stretch and Restore, along with Life Span Dance, energised everyone and prepared our walkers to begin their journey around the park. The scent of sizzling sausages and hamburgers filled the air as the community enjoyed garden games and explored the vendors spread across the park. Little Sunshine Coffee Co. kept everyone fuelled with coffee, while No Guilty Ice Cream added a touch of sweetness to keep spirits high as the community prepared for the walk.
When the rhythmic beats of the Wasamba Drummers filled the air, the walk officially began! Families, friends, and our Parkinson’s WA community embarked on their 2–5-kilometre journey around Perry Lakes Reserve, their smiles and high energy reflecting the crisp joy of a Sunday morning.
Cheerleaders greeted walkers as they returned, celebrating what, for some, was a monumental achievement.
Special recognition went to our top fundraisers, Parimal and Cheryl’s Cheer Squad, for their amazing support, while we also celebrated everyone who showed up with love and
enthusiasm. Even our four-legged friends weren’t forgotten—adorable pups, like Missy, received prizes from the Canine Kitchen for best dressed, with Missy happily rolling around in joy!
A highlight of the day was the children’s colouring contest, where young artists showcased their ...continued on page 16
our Parkinson’s Brochure
continued from page 15...
creativity. As the winners were announced they proudly accepted their prizes with beaming smiles. It was a joyful moment that added even more colour to A Walk in the Park.
We then announced the winners of our raffle, with over $4,000 worth of donated prizes up for grabs. As the crowd eagerly waited for their ticket numbers to be called, lucky winners danced their way to the stage, choosing prizes they could enjoy and share with their families. The day wrapped up on a high note, with the Perth Charity Band playing a lively tune and Tina Alteri clapping along. While it was sad to see the day come to an end, the joy, connection, and sense of community lingered, reminding everyone of the strength and support that Parkinson’s WA continues to provide yearround. With such a wonderful turnout, we’re already looking forward to next year’s A Walk in the Park, and preparations are underway to make it an even more unforgettable experience.
We are thrilled to share that the event raised an incredible $101,745.
Learn more about Parkinson’s disease and the treatment options available. https://www.medtronic.com/au-en/patients/conditions/people-with-parkinsons.html
Share your story
As part of celebrating our 40 years we would like to reach out to you our community and ask if you are willing to share your Parkinson’s story. You can be a patient, a carer or a loved one we want you to share your thoughts and experiences as way of saying Thank you to Parkinson’s WA for looking after the community for 40 years. By sharing your experience, you can help provide understanding, encouragement and hope to others.
To share your story please reach out to marketing@parkinsonswa.org.au or give us a call on 6457 7373.
Celebrating Dedication and Excellence: Parkinson’s WA Annual Awards
Nominations are Now Open!
Parkinson’s WA proudly recognises outstanding contributions to the Parkinson’s community with four prestigious annual awards. These accolades honour individuals and groups who demonstrate unwavering commitment, innovative spirit, and exceptional service in supporting those living with Parkinson’s. Here’s a closer look at the distinguished awards and the qualities they celebrate:
1. The John McDonald Volunteer of the Year Award is presented annually to an individual or collective group who has made a remarkable impact on the Parkinson’s community in Western Australia. Named after PWA’s Board Chairman for over 20 years and known for his selfless dedication, this accolade honours those who have:
• Shown a noteworthy involvement in the Parkinson’s community.
• Made significant contributions that enhance the quality of life for individuals living with Parkinson’s.
• Demonstrated inspiring efforts characterised by generosity, hard work, and kindness.
Recipients of this award embody the spirit of volunteerism, bringing positive change and adding substantial value to the community through their selfless actions.
2. The Janet McLeod Health Professional Award celebrates a health professional who excels in clinical practice, leadership, and education in the field of Parkinson’s care. Named in honour of Janet McLeod, an ex-PWA employee and a trailblazer in Parkinson’s care, this award acknowledges those who lead by example, making a profound difference in the lives of those affected by Parkinson’s. This award is dedicated to individuals who:
• Exhibit outstanding contributions to clinical excellence and evidence-based practice.
• Advocate for value-based support and provide safe, compassionate, and high-quality patient care.
• Show dedication to empowering and upskilling
their peers, fostering a culture of excellence and collaboration.
3. The Community Spirit Award recognises an individual or group who exemplifies the spirit of service and citizenship. This accolade is given to those who:
• Demonstrate exceptional commitment to ‘giving back’ to the Parkinson’s community.
• Exhibit a deep sense of caring and responsibility, enhancing the collective wellbeing of those with Parkinson’s.
• Positively impact Parkinson’s WA’s Aspiration and Purpose, contributing to the overall success and improved quality of life for individuals with Parkinson’s.
This award honours those whose altruistic efforts connect and uplift the community, embodying the best in community service.
4. The Geoff Pride Fundraiser of the Year is named in honour of Geoff Pride, a dedicated former treasurer of Parkinson’s WA who devoted 16 years to the organisation. This award recognises:
• Exceptional hard work and creativity in fundraising efforts undertaken in partnership with Parkinson’s WA.
• A steadfast commitment to ethical standards and the timely donation of funds.
This accolade highlights the critical role that innovative fundraising plays in supporting Parkinson’s WA’s Purpose, celebrating those who drive financial support with integrity and passion.
All the awards reflect Parkinson’s WA’s deep appreciation for those who contribute to improving the lives of individuals and their families living with Parkinson’s. Each awardee, through their unique efforts and dedication, plays a vital role in advancing the Purpose of Parkinson’s WA and enhancing the quality of life for the community they serve.
Nominations can be forwarded to Yasmin Naglazas, CEO, at yasminnaglazas@parkinsonswa. org.au or alternatively speak with Yasmin by calling her on (08) 6457 7373. Nominations close on Monday 11 November 2024.
Fundraising
Celebrate 40 Years of Community with a Morning Tea for Parkinson’s WA!
This November marks a significant milestone for us as we celebrate our 40th birthday! To honour this occasion, we invite you to join us in giving back by hosting a morning tea for Parkinson’s WA.
Why?
By coming together for a morning tea, we can raise awareness and funds to help Parkinson’s WA continue their vital work.
How You Can Get Involved:
1. Sign up to be a host - https://www. parkinsonswa.org.au/the-parkinsons-tea-party
2. Host a Morning Tea: Gather your friends, family, or colleagues for a morning tea. Whether it’s at home, in the office, or at a local café, every little effort counts!
3. Spread the Word: Share your morning tea plans on social media and encourage others to join in. Use the hashtag #TeaForParkinsons and tag us to create a ripple effect in our community.
4. Fundraise: Consider asking for donations
instead of gifts or selling delicious treats. Every dollar raised will go directly to Parkinson’s WA, making a real difference in the lives of those affected by this condition.
5. Share Your Stories: We’d love to hear how your morning tea goes! Share your photos and experiences with us, and we’ll feature them in our next newsletter.
Event Details:
• When: Throughout November
• Where: Your chosen location
• What to Bring: Your favourite tea, delicious treats, and a big heart!
Let’s come together to celebrate our 40 years of community spirit while supporting a cause that truly matters. Your participation will not only make a difference for Parkinson’s WA but also strengthen the bonds within our community.
Thank you for being an integral part of our journey. Here’s to 40 years and many more to come!
Exciting Changes to Parkinson’s WA Membership Program!
At Parkinson’s WA, we are always striving to bring more value to our members, and we’re excited to share some fantastic updates to our membership program. Over the past year, we have worked on refreshing our membership benefits, ensuring that each member gets even more value and support as part of our community.
By joining Parkinson’s WA as a financial member, you become part of a supportive community that advocates for individuals and families living with Parkinson’s. Our Purpose is to enhance the quality of life for those living with Parkinson’s, their caregivers, and the wider community through personalised support and education. We are dedicated to supporting over 15,000 individuals across Western Australia, including patients, families, caregivers, health professionals, and researchers.
New and Improved Membership Benefits!
As part of our refreshed membership program, we are pleased to introduce even more benefits to help you connect, learn, and make the most of your membership.
If you are already a current member of Parkinson’s WA, you don’t need to do anything— all these exciting benefits are available to you right away!
Here’s what you can enjoy as a member of Parkinson’s WA:
• A hard copy of the Parkinson’s WA Newsletter three times a year.
• Complimentary admission to Parkinson’s WA Seminars (normally $20 for non-members). NEW benefit!
• Exclusive access to live-streamed seminars, with the option to watch later through a members-only link. NEW benefit!
• A 50% discount on registration for our signature event, A Walk in the Park. NEW benefit!
• A 10% discount when purchasing merchandise from Parkinson’s WA. NEW benefit!
• Invitations to exclusive member events, including the annual Twilight Sailing event
• Access to the Parkinson’s WA Resource Library.
• The opportunity to apply for a Member Scholarship, offering financial support for attending Parkinson’s-related conferences or courses. NEW benefit!
• Full voting rights at the Annual General Meeting, giving you the chance to have your say in shaping our future.
And we’re not stopping there—we’re continually working on adding even more value to enhance your membership experience!
A Change in Membership Categories
As part of our efforts to simplify and strengthen the membership program, at the General Meeting of the Association held on Thursday, 18 April 2024, a resolution was passed to amend Clause 6.3 of Parkinson’s WA’s constitution, resulting in the deletion of the ‘Associate Membership’ category. We invite those who were previously Associate Members to become Co-Members This ensures that every household has access to the benefits and resources of our community while actively supporting Parkinson’s WA in our Aspirations and Purpose.
Consider Life Membership!
If you’re a current Annual Member, we invite you to consider upgrading to Life Membership during your next renewal. Life Membership is available for a one-off cost of $360, providing lifelong access to all the fantastic benefits without the need for annual renewals.
Join Parkinson’s WA today!
If you haven’t joined Parkinson’s WA yet, there’s never been a better time to become part of our community. By joining, you’ll not only be helping to create a future where no West Australian faces Parkinson’s alone, but you’ll also gain access to a range of valuable benefits designed to support you, your family, and your caregivers. From exclusive events and discounts to personalised resources and educational opportunities, membership with Parkinson’s WA is your gateway to meaningful support and connection.
For more information about the Parkinson’s WA membership program, contact our office on 08 6457 7373 or email info@parkinsonswa.org.au
SAVE THE DATE!
Advanced Care Planning W/shop
Tuesday, 12th of November - The Niche
2024 Yahava KoffeeWorks Cool Water Classic
Saturday, 16th of November
International Volunteer Day Celebrations
Thursday, 5th of December
LIMITED PLACES
PWA Annual General Meeting
Thursday 7th of December - The Niche
Twilight Sailing
Wednesday 26th of February
National Parkinson’s Conference in Canberra 6-8 April 2025
Please note that Members will be able to access the recording of this seminar as part of their Membership benefits
Parkinson’s
Advanced Care Planning
Seminar
Tuesday 12 November 2024 10:30am - 2:00pm (approx)
The Niche Building 11 Aberdare Road, Nedlands WA 6009 cnr Aberdare Road and Hospital Avenue, Entry via Hospital Ave
Presenter:
• Sabena Lund Community education and Projects Officer at Palliative Care WA
Cost: Parkinson’s WA Members: Free; Non-Members: $20 each Lunch will be provided.
RSVP: Contact the Parkinson’s WA office by Wednesday 6 November 2024 on (08) 6457 7373 or info@parkinsonswa.org.au
11
Aberdare Road, Nedlands WA 6009
Phone: (08) 6457 7373
Email: info@parkinsonswa.org.au
www.parkinsonswa.org.au
Office closure over the Christmas period
The Parkinson’s WA office will be closed from Monday 23 December, and will reopen on Monday 6 January 2025. Stay safe over Christmas and the holiday period.
Just a reminder that Parkinson’s WA is not an emergency service. The phone and emails will be unattended during this time of leave. Messages will be responded to by staff in the new year.
If medical intervention is required at this time, please consult your Medical Practitioner for patient-specific information, Health Direct on 1800 022 222
In case of emergency, present to your local Emergency Department or contact 000.
