2023 Summer Newsletter

All the latest stories and updates from around our State

| 2023

Celebrating the 25th Anniversary of the Parkinson’s Nurse Specialist In 1997, the Board of Parkinson’s Western Australia became committed to lobbying the State Government for funding and support for a Parkinson’s Nurse Specialist based on the model in the United Kingdom.

With the support of the Neurological Council of WA and many health professionals, they were successful in achieving funding for one nursing position for a trial period of twelve months, commencing in November 1998.

2023 A WALK IN THE PARK pg 7

On Friday the 24th of November, Parkinson’s Western Australian hosted a High Tea at The Boulevard Centre, Floreat to celebrate the 25th Anniversary of the Parkinson’s Nurse Specialist.

This celebratory and joyful event saw members of the community come together with special guest Minister for Health and Mental Health, AmberJade Sanderson who recognised the work of the Parkinson’s Nurse Specialist’s past and present.

Minister for Health and Mental Health, AmberJade Sanderson shared “Currently there are more than fifteen thousand West Australian’s living with

YOGA THERAPY & PARKINSON’S pg 16

continued on page 11...

FINDING A NICHE pg 20

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 PRESIDENT John McDonald VICE PRESIDENT Professor Natalie Gasson TREASURER (ACTING) John McDonald SECRETARY Tamlyn Lennox BOARD MEMBERS Dr Don Bolto, Keith Geers, Alan Gray Alastair Hope, Prof. David Blacker CHIEF EXECUTIVE OFFICER Yasmin Naglazas OFFICE MANAGER Toby Gummer FUNDRAISING MANAGER Kerrin Girando FINANCE MANAGER Salil Koonja COMMUNICATIONS MANAGER PHOTOGRAPHER Jacqui O’Leary SENIOR PARKINSON’S NURSE SPECIALIST Janet McLeod PARKINSON’S NURSE SPECIALISTS Amanda Coultous, Fiona Roscoe, Jo Chadwick, Kayleigh Rawle, Liz Bickley, 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.

2 | Parkinson’s Western Australia

FROM THE CEO’S DESK Our signature event of the year, A Walk in the Park, was a remarkable success and was the culmination of many months of work by the Parkinson’s WA team. The amount of activity in the office demonstrated the huge commitment from my staff to ensure the event was well executed.

The lead up to Sunday 10th September 2023 was all-consuming, however very much worthwhile. My appreciation goes to the PWA team as well as all those who participated and donated. The event received a significant amount of very positive feedback and the final tally of the amount raised was more than $60,000!

As we come into the warmer months, and with Christmas just around the corner, I reflect on the amount of activity and change that the PWA team has embraced over the course of 2023. Changes and improvements in the way we work have been in direct response to achieving the Parkinson’s WA mission – to encourage people living with Parkinson’s to get the most out of life, to advocate on their behalf and to secure funding to support research.

One of the most significant projects of the last few months has been to determine how all of our computer systems work together and whether we are realising the benefits of the important data that can be produced.

This is data, which not only helps us to be good stewards of government funds and donations from the community, but also assists in the planning of PWA activities that benefit our members. This includes preparing for seminars following feedback from our members right through to ‘being on the front foot’ with respect to the Parkinson’s Nurse Specialist service and the level of care/support and the timeliness of the service. As an example, our data is already telling us of the value of early intervention on the impact of the management of Parkinson’s and this is assisting us to examine the schedules of support visits for those living with Parkinson’s who are receiving our care/support.

I write this CEO’s update during Mental Health Week in WA and note that the theme this year is Mind, Body, and Environment, encouraging West Australians to participate in local events, conversations, and activities to raise the awareness of positive mental health and wellbeing. I mention this as the mental/emotional health of those living with Parkinson’s is important and investing time and effort in maintaining well-being better equips individuals to navigate the challenges of living with Parkinson’s. We have long advocated for care that pays attention to the nutrition we consume, the movement of our bodies and the connections with friends and family as being key pillars in the Parkinson’s journey. The Parkinson’s WA team, inclusive of the Specialist Nursing Service, are here to work with those who have a diagnosis of PD to ensure they get the most out of life.

Our Christmas appeal has hit mailboxes and we look to our members for their support. We know that we can do so much more with your generous donations, helping us run more programs and research for those living with Parkinson’s.

This being our last newsletter until the New Year, I sincerely wish you a very peaceful and satisfying Christmas!

Adj Professor Yasmin Naglazas Chief Executive Officer

From the Nurses’ Desks Dear Friends, It has been great to see so many of you engaged with us over the past few months. Our recent seminars in Bunbury and Perth were very successful and your feedback tells us that you found them informative. We have held our annual Seminar Planning and we look forward to an interesting program in 2024. I am sure you will agree that A Walk in The Park was a great success. For our nursing team it is a great opportunity to catch up with a lot of you and it is always encouraging to see you out and about and exercising! No pressure but exercise needs to be maintained for the whole year.

Our Nurses’ office is having a reshuffle as we are having major staff changes.

Liz Bickley, who has been with us since April 2016 working in the South West, is retiring early December after a long and highly skilled nursing career. We will miss Liz and her cheerful professionalism but we wish her well for a long happy retirement. The timing of Liz’s retirement was perfectly aligned with Fiona Roscoe’s long planned tree change in the South West.

Fiona will take over Liz’s area as of early December. Fiona has already met some of our SW members at the recent seminar and is looking forward to getting to know the area and the services in her new catchment area. We welcomed our newest nursing team member Sheree Ambrosini in early November. Sheree has been a long term Parkinson’s Nurse Specialist in Victoria and has relocated to Perth. She will be taking over Fiona’s area.

We are really delighted with the way everyone’s life pathways have been factored into our closely knit team and we know you will all enjoy meeting the new Parkinson’s Nurse Specialist in your life.

We cannot believe it is our last newsletter before Christmas so please stay safe and healthy and enjoy the holiday period.

Yours, The Nurses.

Sheree Ambrosini

Newsletter Summer 2023 | 3

Nurses’ Updates Liz Bickley Liz will be greatly missed by many of her patients spanning across the Southwest region. Liz has worked in hospitals across the state and in the community for Silverchain, Palliative Care and PWA for 8 years. Liz received The Nursing and Midwifery Award for Nurse of the Year for her amazing work in the Palliative Care space over the years.

It has been our absolute pleasure to work alongside Liz for the past 18 months at Parkinsons WA, we feel very honoured.

Liz, I hope your retirement brings many a beautiful sunset stroll, travels and special time with loved ones.

Thank you for everything, Cheers for now, not goodbye.

Donna Mallaby (L) and Liz Bickley (R) at the recent 25th Anniversary of Parkinson’s Nurse Specialist High Tea

Fiona is heading to the Southwest “I have thoroughly enjoyed my role as the Parkinsons Nurse Specialist for the Northwest Metro area since February 2015. There are very many people I will miss not to mention my patients and their families, the fantastic members and committee from Kingsley and Western Suburbs support groups, my Residential Aged Care colleagues, and the teams of dedicated healthcare professionals at Osborne Park, Joondalup Day Therapy and Glengarry Hospitals.

I feel very blessed to be able continue my work with PWA in the Southwest as I step into my retiring colleague Fiona and Committee members Liz’s shoes for what should be a smooth transition. at Kingsley Support group Same role, different location! I know I leave my patients in very capable hands with my replacement and have enjoyed introducing her to the area. I am very excited to be making the move and can’t wait to make new connections, maintain existing ones, forge new collaborative alliances and provide support and education to more members of our fantastic community in the beautiful surrounds of the Southwest. “

4 | Parkinson’s Western Australia

DEAR NURSES, ery early Dear Nurses, or problems but ev in m t ou ab g in ry woken up by ink that I am wor . At daybreak I am I hope you don’t th m le ob pr e ng ra st ds the e a really to curl back towar t an w to morning I experienc em se es back of ft foot and the to om which is at the ro th ba e th to discomfort in my le k al e to w diatrist but es it difficult for m ow you are not a po kn I . es mattress- this mak ss pa y da e s to ease off as th the house. It seem is could be? ggestions what th su y an ve ha u yo years. I take my do Parkinson’s for six ith w d se no ag di n early in the New have been t and I see her agai lis I am sixty four and ia ec sp y m by artment.’ as instructed re it is not her ‘dep su am I as r medications strictly he to lem entioned this prob Year. I have not m Tim of Tapping

Dear Tim, Your question is quite suitable for our nursing team as the symptom you describe can be associated with Parkinson’s and is referred to as dystonia. Dystonia is defined as involuntary muscle contractions that cause repetitive or twisting movements. It is a condition on its own but in Parkinson’s it is often experienced when medications wear off before the next dose (in your case overnight). It is certainly something you should discuss with your specialist when you see her next. The reason it eases as the day passes is that your Levodopa is working well for you and relieves the muscle stiffness and rigidity.

I am glad you brought up the topic of feet - as you know Parkinson’s can affect mobility and we do monitor for falls etc. Keeping your feet in tip top condition is very important in managing Parkinson’s long term. Feet are the point of contact with the ground and any impairment in that base can affect mobility and increase the risk of falls. Having a regular podiatry review is strongly recommended to prevent avoidable feet related problems-for example the symptom you describe can lead to callouses on the lower aspect of the toes which can cause walking problems and pain. As you have Parkinson’s you will qualify for a Health Care plan from your General Practitionaer and including a podiatrist in that health care plan is advised.

We hope this answers your query and remember everything is worth a conversation and no question should go unanswered.

Yours The Nurses

Newsletter Summer 2023 | 5

Research News General News As you are all aware research globally took a hit during the Covid years with studies being put on hold due to the challenges of recruiting and meeting face to face.

More locally in Parkinson’s WA our focus on research has been revived with a lot of work going into our Research committees and methods of collating and approving proposals. Our new look Research committee met face to face in mid -October and from this meeting you will become more aware of our research focus on our website and social media. We encourage you to participate in any studies you see advertised as every bit of information gained through research is a potential game changer!

Prof Bruno Meloni in the Perron Institute laboratory

Local Research The researchers at Perron Institute are calling for more recruits for the TONiC study and one of our nursing team has already enrolled as a control participant (a person without Parkinson’s). The process was painless – just providing a small sample of saliva and giving some personal information.

If you are interested to help, visit this link: https://bit.ly/tonic-pd

Global Research If you were at our August Postcards from Barcelona seminar you will have heard Fiona speak about diversity in Parkinson’s. A recent finding from the Global Parkinson’s Genetic Program will help add to the body of knowledge in genetic diversity of Parkinson’s. The Global Parkinson’s Program is a five year research program which has identified a new genetic risk factor for Parkinson’s found almost exclusively in people of African ancestry.

This large study which involved 1488 cases of Parkinson’s and 196,430 controls (all of African descent) found a previously unrecognized variation in part of DNA called the GBA1 gene which increases the risk of developing Parkinson’s as well as influencing the age of onset. We already knew that various mutations of the GBA1 gene are the most common genetic risk factors for Parkinson’s accounting for 10-15% of people with Parkinson’s.

6 | Parkinson’s Western Australia

Historically research has focused on people of European descent which may have skewed our overall understanding of the condition. Under represented communities such as African and Asian regions often experience lower rates of diagnosis and reduced access to and quality of care. There are now many efforts around the world to address this. Cure Parkinson’s UK is funding the East London cohort study which is following a group of people with Parkinson’s from a variety of ethnic backgrounds including Asian and Afro – Caribbean with the goal of establishing a trial ready group.

If you are interested in beliefs, superstitions and challenges found in the African communities we suggest you watch David Plummer’s documentary Shaking hands with the Devil davidplummer.co.uk

2023

OUR COMMUNITY Making a Difference 2023 A WALK IN THE PARK September What an incredible day we had on Sunday at our 13th annual ‘A Walk in the Park’ event at the Town of Cambridge’s picturesque Perry Lakes Reserve. This year was the best we have seen in a long time and the feeling all around us reflected that perfectly as we heard from our attendees and their stories.

Town of Cambridge Mayor Keri Shannon and the local Member for Nedlands Katrina Stratton joined us on the day and walked along-side our community as we celebrated together.

We were grateful to provide this opportunity to connect and to raise funds for the Parkinson’s Nurse Specialist service while enjoying a beautiful day out with friends.

Thank you to our incredible supporters, sponsors, donors, community, walkers, families, staff, volunteers and everyone who gave their time, enthusiasm, energy and commitment to making

this a wonderfully special day filled with light, laughter, smiles and joy.

Thank you to our Sponsors: AbbVie | Affinity | Beyond Bank Australia | Medtronic.

Thank you to our volunteers. We could not have put on the day without you. We had more than 50 volunteers who donated their time, including the Parkinson’s WA staff, their family and friends and also volunteers from: Beyond Bank Australia | Curtin University | The University of Western Australia.

Thank you to our ‘A Walk in the Park’ entertainment who donated their time for the day: • Paige and Liz from Lifespan Dance • The incredible performance from the team at WASAMBA!!

We thank you all for your passion and efforts that made this event the success it was.

Newsletter Summer 2023 | 7

2023

“We were truly impressed by the exceptional organisation of the A Walk in the Park event.

The dedicated volunteers who orchestrated the day’s activities ensured that everyone had an enjoyable time. The walk and various activities were not only well-organised but also filled with warmth and compassion. It was heartwarming to see so many individuals coming together to support such a noble cause. Magnetic People participated in this fundraising event with heartfelt dedication because Parkinson’s disease touches our lives on a deeply personal level. Many of our team members have loved ones who have been affected by this challenging condition including Tanya Pavez, our Managing Director, whose father Graeme bravely battled Parkinson’s

until his passing four years ago. By supporting this cause, we honor the memories and strive to make a difference in the lives of those living with Parkinson’s today.”

Tamara Caygill, Operations Manager

Some feedback from our AWITP participants...

“Each year, Parkinson’s WA ‘A Walk in the Park’ fundraiser is a symbolic way that the local community, and the greater Perth community, can show their support for people living with Parkinson’s, their partners and their carers.”

“While providing support to people living with the condition is a big focus for the organisation, the great work that Parkinson’s WA does is also very much about providing support for carers for partners and carers. This includes everything from seminars to community programs held across Perth including one in the western suburbs.”

Mayor Keri Shannon “We love bringing the energy to the event and we can see that people love it and respond to us in such a positive way. Doing charity walks is the ideal way to give back to our community and engage people living with Parkinson’s to dance and move and smile. It is vibrant and joyful. I am very keen to always be involved in A Walk in the Park and they will continue to have our support.”

Dave, Wasamba Carnival Drummers “Every person can make a difference in someone’s life. It was so lovely to see so many different people coming together to make a difference in the lives of people with Parkinson’s.”

Donna Mallaby

8 | Parkinson’s Western Australia

More Praise...

“My favourite part of the day was encouraging families along the course and making sure everyone was positive and happy! It was so lovely seeing so many people come together for such an important cause.”

Libby Barret-Leonard AWITP Volunteer

"It was a lovely day, which my family and I enjoyed very much!

We are looking forward to seeing how much was raised. It was just wonderful sharing the event with so many folks there to support Parkinson's WA." Bev Hannan, Kingsley Support Group Leader and partner/carer

“I attended the walk with my son and husband. It was a very friendly, uplifting vibe connecting the community. Great for the children with numerous exciting activities and programs for them to engage in. I felt like this year was different and the energy was exciting”.

Rachel Marshall Parkinson’s Nurse Specialist

“A glorious day for an important cause.

A great show of support from the hundreds walking and the thousands raised - and the invaluable awareness of Parkinson’s and its impact on people, their families and communities.

Dr Katrina Stratton

Newsletter Summer 2023 | 9

Community Fundraising We are continually impressed and grateful for people’s fundraising activities for Parkinson’s WA which range from fitness challenges, hosting a morning tea to head shaves.

If you are interested in fundraising for Parkinson’s WA, we would love to hear from you. By raising money for us you will help to strengthen the Parkinson’s Nurse Specialist service by supporting Western Australians, living with Parkinson’s.

There are so many ways you could raise money for Parkinson’s WA through an event or activity.

Previous fundraisers have raised money through: • Bake sales, • Market stalls, • Dedicated sporting rounds, and • Sausage Sizzles.

Tell us more about what has inspired you to help

10 | Parkinson’s Western Australia

Parkinson’s WA and we very much look forward to supporting you with your fundraising journey.

Please reach out and chat to our Fundraising Manager Kerrin on 6457 7373 or email fundraising@parkinsonswa.org.au

...continued from front page

Celebrating the 25th Anniversary of the Parkinson’s Nurse Specialist Parkinson’s and this service works closely with GPs and neurologists across the State,” she said.

“We know what a difference this very specialised service makes to the lives of people living with Parkinson’s and for their families.”

Clinical Nurse Manager, Janet McLeod was WA’s first Parkinson’s Specialist Nurse and she remembers her early days “I remember so well that day in 1998 when it was announced I had been appointed as the inaugural Parkinson’s Nurse Specialist, and I promised then that I would dedicate the rest of my professional life to the Parkinson’s community.” Janet certainly backed this up, in 2012 was awarded the Dr. Rana International Award for education in the field of Parkinson’s (Canada) and the Order of Australia Medal for services to nursing, to the Parkinson’s community.

Chief Executive Officer, Yasmin Naglazas shared “The 25th anniversary of the Parkinson’s Nurse Specialist service at Parkinson’s WA is a significant celebration and an initiative of which we are very proud.

Our expert nursing team conduct their work to the highest standard, with a level of enthusiasm that is the envy of other organisations. They are often considered the most experienced team of Parkinson’s nurse specialists in WA. We are delighted to have an opportunity to hold such a wonderful celebration, acknowledging the support and care that the Parkinson’s WA Specialist Nursing service offers and the difference we know it makes to individuals’ lives.”

We would like to acknowledge and thank the members of the community who attended the special day and also acknowledge the message of thanks and support we have received over the last month as we celebrated this milestone.

Newsletter Summer 2023 | 11

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Our guide to getting Assistive Technology in your NDIS plan Accessing the right assistive technology (AT) can be a journey, but Indigo’s dedicated occupational therapists and speech pathologists are here to help you reach your goals of independence and get the appropriate AT. AT is designed to help people be more independent in their everyday life. It can include items like non-slip mats and adapted utensils, as well as larger equipment like specialised mobility aids. At Indigo, our staff will consider budget, needs, abilities, and goals, to help you find, select and access the right AT, including assistance with NDIS funding and preparing the evidence needed for NDIS planning meetings.

There are three types of assistive technology that can be accessed through NDIS: Low-cost AT (up to $1,500) is easy to set up, use, and access, like alternative cutlery, or a walking stick. You might be able to purchase them from our National Equipment Database, but we recommend that you receive professional advice first. Our staff can help find AT in the Experience Centre, ensure that a product is suitable, and teach you how to use it safely.

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Greater independence and incl for all through allied health and assistive technology solutions.

Mid-cost AT (from $1,500 - $15,000) is more complicated, and guidance from our staff to find and set up the right product for you. AT in this category varies – it can be a specialised shower chair, or a standing bed hoist, or even low-level communication tools. We meet with you and/or family to provide advice and AT recommendations, ensure that the AT is customised and safe, and then our staff will submit a report to the NDIS, or provide you with a letter of reference for a planning meeting as evidence.

High-cost AT (more than $15,000) consists of complex devices that need specialised knowledge to select and set up, like highlevel communication devices, or customised wheelchairs. These AT require a quote and assessment by our staff, to determine what your needs are and what AT would be best. Depending on the equipment, you may be able to trial it first, to be sure that the AT is meeting your needs.

Assistance with applying for NDIS funding and being with you every step of the way ensures you get the equipment that is right for you.

For more information visit: www.indigosolutions.org.au

A very stylish couple by Polly Gardner “As someone living with Parkinson’s, I’ve spent a long time resisting assistive devices that might have made my life easier – and safer – because I didn’t want to “give in”. For example, I wanted to deal with my walking difficulties by overcoming them. I could accept a walking stick but going the next step to a walking frame was too far. It seemed too cumbersome and clearly identifies you as old and disabled. I was certainly never going to be seen creeping around a shopping centre sitting on a mobility scooter.

Then something happened to change my mind.

My daughter and eight year old grandson were coming for the school holidays and I took a chance and rang Rottnest to see if there was any accommodation available. One last cottage!

What a stroke of luck. Then I rang to book their bikes and a cheery young voice said, “And what about you? How will you get around? Will you have a mobility scooter?” Astonished, I tentatively agreed to book one.

It was waiting for us at the end of the jetty when the boat arrived, so there was nothing to do but

receive instructions from the eight year old who mastered its very simple technology in about two minutes. I climbed aboard and settled into its comfortable seat. It felt quite secure as I applied a bit of pressure to its single-driving lever. From that very moment, it was fun –and freedom.

The next day, riding around the island together, we were complimented for being such a stylish couple. I had a fabulous time, riding the bikes to the shops, as well as just exploring every nook and cranny of Rottnest from Geordie Bay to the Basin and the settlement. I had my walking stick on board and could park and explore a sandy path on foot, enjoy the view, join the others on the beach and then take off again. And I could carry the towels and supplies, that were too heavy for his sparkling sky-blue bike, on my shiny royal blue scooter. There was a bit of turtle and hare competition as he flew past me on the downhill slopes, and I steadily overtook him as he walked to the top of the hills.

Home again, it has set me off on a new quest to thoroughly research the mobility scooter market and find the perfect one for me. Perhaps I’ll even investigate the walking frame options to find something that would really suit me – one that is light but stable and can be easily folded and lifted into the car. Suddenly I’m noticing them everywhere. Yesterday I came across a savvy friend with a very cool aluminium model that was so easy to use and so simple to fold and light to pack into her car.

Whatever happens, it will be an excellent addition to my collection of multi-coloured walking sticks – one for every occasion.”

Newsletter Summer 2023 | 13

Nurse Visit to Collie CWA The Collie Support Group was recently held at the Country Women’s Association (CWA) in Collie at their ‘Soup and Sandwich’ Lunch. The beautiful spread included four different homemade soups, sandwiches, desserts, and tea and coffee which were all made locally by the ladies at CWA. South West Parkinson’s Nurse Specialist, Donna said she was privileged to represent Parkinson’s WA at the Collie CWA. “I delivered a quick talk about Parkinson’s and the role of the PNS service in the South West community, and we were met with interest and support,” she said.

“The ladies at CWA kindly donated their $10 lunch sales for the day to Parkinson’s WA with a cheque for $350.00 - what an amazing effort and gift to support us in the work we do.”

“Collie has an amazing community and we are always blown away by their commitment to their people.”

Legal Planning Seminar In August we held a Legal Planning Seminar at The Niche building in Nedlands which was offered free to our Parkinson’s community members, courtesy of the team at Cullen Macleod Lawyers.

This annual Seminar offers unique legal planning advice to those living with Parkinson’s and provides knowledge and guidance on how to make plans to live life fully.

Thank you to the team for donating your time and providing the tools to enable further independence.

Pictured left are Parkinson’s WA Fundraising Manager Kerrin Girando and Ross Harrison, Consultant, Commercial and Succession Planning.

14 | Parkinson’s Western Australia

Thank you for your support to Parkinson’s WA! CONTAINERS FOR CHANGE

Coping with advancing Parkinson’s

Dr. Richard White, Neurologist

Every person’s Parkinson’s disease journey is different. It is very hard to predict how the condition will progress over time but good communication with your doctors will help to ensure your treatment plan adapts to your changing needs. Dr Richard White, a Parkinson’s disease specialist provides some tips and advice on how to cope with the later stages of the condition.

How can you maintain a good quality of life when living with Parkinson’s?

Being active both physically and cognitively is important, along with maintaining good support networks and taking your medication as advised by your doctor.

How should you prepare for the later stages of Parkinson’s?

“

These can be signs that your oral medication might not be working as well as it used to. If you are having an unpredictable response to your medication or needing it more often, it may mean your Parkinson’s If something is progressing and you may need to speak with your doctor about the next stage of treatment has changed options.

discuss it with your GP or specialist.

Adopting good habits early on like a healthy diet, physical activity and keeping cognitively active are helpful. It is also worthwhile to consider your perspective on advanced treatment options. Doing research to understand the options available, the pros and cons and the criteria involved in accessing them is useful, especially if in your later illness you experience issues with cognition which may make it more difficult to make decisions.

What changes in symptoms should you look out for over time?

Sometimes changes in symptoms can happen gradually that people adapt and don’t seek support for them. Pay attention to your walking speed and freezing.

”

What information should you share with your doctors about your Parkinson’s?

Don’t be afraid to raise symptoms or issues that you may be experiencing. If something has changed discuss it with your GP or specialist. Ahead of your appointment, think about what your main issues are and have them ready to discuss first.

When I see patients, I often start by asking about their motor symptoms first. I want to understand if they are moving like they should be, are they functioning okay day-to-day, is their medication working and is it lasting, are they experiencing break through symptoms, at night are they able to turn over in bed? I will then ask about their non-motor symptoms. For example, how are they sleeping, how is their mood and are they experiencing any dizziness? All these things help me understand whether I need to adjust or change a patient’s treatment plan to help them maintain a good quality of life.

This article is sponsored by AbbVie. Dr Richard White received an honorarium for his involvement in this article.

AbbVie Pty Ltd. 241 O’Riordan Street, Mascot NSW 2020. AU-NEUP-220045, August 2022

Newsletter Summer 2023 | 15

A Moment of Calm amongst the Chaos Yoga Therapy and Parkinson’s Yoga Teacher Amanda Shirley lives with Parkinson’s and for her, staying fit and in control of her health was always the priority to creating that balance.

participants to tune into the sounds, disconnect their mind from the moment, and find their ‘calm’.

Amanda said she felt empowered by the element of holistic wellness embedded in the practice, and when examining prescriptive exercise, we could not examine the physicality only.

“When we look at a Yoga student with Parkinson’s, we might think that the physical level is the most important to work on to improve mobility, however, this is not the case.

Practices that support and balance mental and emotional faculties will have just as much, if not more, benefit to the person’s overall health and wellbeing,” she explained with an understanding that she had personally seen this applied through her journey with Parkinson’s.

She said that having a diagnosis of Parkinson’s only confirmed this for her personally, and has inspired the passion for teaching others the craft.

“What Yoga offers an individual with Parkinson’s, is one way which may help slow down the progress of the symptoms, both motor and non-motor.

It helps an individual to develop peace of mind, inner stillness and, maybe most importantly, ‘acceptance’ of the condition through their practice,” she explained.

“What I do know is that at some point you have to pick yourself up and move forward, and I think when you come to a place of some level of acceptance about the diagnosis and, in my case, the acknowledgement that I was not going to die anytime soon from this, it became so much easier to live life to the full by focussing on my future well-being,” Amanda acknowledged with the familiarity of her life’s focus on wellness.

“Currently, Parkinson’s is not curable, but research is indicating that forestalling it’s progression may now be possible.”

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“Once I accepted the fact that I had Parkinson’s, which I could not control or change (or so I thought), it was more about what I could do to create some control in my life around this challenge, and how I could be the best version of myself mentally, emotionally and physically under the circumstances.”

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Class participant *Cyndi exclaimed that she could not believe her luck in finding a program such as Amanda’s class that was Parkinson’s-centric, which she said gave her a great deal of comfort.

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“Our weekly class consists of fairly even numbers of both men and women, of all ages and abilities.

Some use a chair throughout while others are floor-based. Carers are also welcome.”

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“Amanda focuses on building strength, flexibility and balance and, possibly because she also has Parkinson’s, she has an innate ability to assess and respond to individual participant’s needs and abilities.”

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Beginning the class with welcome chants and basic warm-ups to stretch all the joints, especially the small ones such as fingers and toes, Amanda sets the tone with relaxing music, reminding

Enhancing this thought, was the gentle, reflective notion of what was to come and how her actions could empower that future. w

Amanda teaches a local Yoga Therapy class in Manning with both floor and chair-based exercises that are tailored to the needs of people with Parkinson’s. The accessible class involves gentle stretching, simple but effective Yoga postures, breathwork and relaxation techniques.

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“The class begins and ends with a period of meditation and while I know that I benefit from the Yoga exercises, it’s the meditation element that gives me the most joy. I lead quite a busy life and find it difficult to slow down, but I’m also very conscious of the mental ‘weight’ of Parkinson’s.

Amanda’s Yoga has been incredibly beneficial for my mental health - I can’t recommend it highly enough.” *Cyndi revealed that her Neurologist was encouraged by her progress and had recently commented very positively on her exercise regime, acknowledging how important it was to include a focus on mental health, as well as physical - something intrinsically overlooked.

strength; therefore, reducing the risk of falls and most importantly, improving overall quality of life,” Donna stated.

“Yoga has many benefits, for people living with Parkinson’s. A randomised research trial published in the International Journal of Yoga asserted that Yoga may assist in improving both motor and non-motor symptoms of people with Parkinsons.

Modest improvements were seen in balance, functional mobility, mood and sleep.” *Names have been changed to protect the privacy and anonymity of the person quoted in the article.

Ruth was diagnosed with Parkinson’s two years ago and during that initial process, she received the recommendation to take up Yoga Therapy to help support her Parkinson’s symptoms.

“The Yoga classes have improved my flexibility, strength, mobility and gave me my confidence back,” she said.

“The program has given me techniques on how to relax and breathe when I’m feeling anxious.

What I love most about the classes, is that I can go at my own pace, everybody is nonjudgemental, and the activity gives me the social outlet of meeting other people in the community who are living with Parkinson’s.”

Parkinson’s WA Parkinson’s Nurse Specialist and 500-hour Yoga Teacher Donna Mallaby, said that the beautiful thing about Yoga, is that it is for everyone, regardless of age or ability.

“Yoga Therapy can aid in overall body strengthening, flexibility and assist with freedom of movement. Yoga can also assist people with Parkinson’s in improving posture, balance, and

Newsletter Summer 2023 | 17

World Parkinson’s Congress by Kayleigh Rawle

Ola! I have recently come back from Barcelona where I was fortunate enough to attend the 6th World Parkinson’s Congress.

For those that don’t know, the WPC is the only global event that brings the entire Parkinson’s community together. It is not only an event for health professionals and researchers but for those who live with Parkinson’s day in and day out.

It was such a vibrant and exciting meeting with a diverse mix of delegates. I met so many inspirational people whose lives have been touched by Parkinson’s and I heard so many important topics being discussed. I learnt so much listening to presentations given from the perspective of people living with Parkinson’s….at the end of the day they are the real experts!

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I had the chance to attend scientific presentations on current research and scientific breakthroughs given by researchers, Presentations on how to live better with the condition given by practitioners in the field and visited exhibitors from all around the world, representing both industry and non-profit organisations.

I took away lots of valuable information from the congress which I shared with the Parkinson’s WA community at our seminar “Postcards from Barcelona” in August.

It was a meeting of hope - a hope for better quality of life and one day a cure.

Article Supplied by Perron Institute

Novel drug being trialled for stroke may benefit people with Parkinson’s or Alzheimer’s Argenica Therapeutics, a Western Australian-based biotechnology company developing novel therapeutics to reduce brain tissue death after stroke and other brain injuries has announced new preclinical research findings showing possible benefits for disorders such as Parkinson’s disease and Alzheimer’s disease.

One of the hallmarks of Parkinson’s is the accumulation of aggregates of the protein alphasynuclein ( -syn) in neurons. This neural protein plays a role in the transfer of information between neuronal cells and in the immune response in non-neuronal cells.

The data is from the laboratories of Argenica’s Chief Scientific Officer, Professor Bruno Meloni (UWA and Head of Stroke Laboratory Research at WA’s Perron Institute) and Associate Professor Ryan Anderton from The University of Notre Dame.

“It confirms that ARG-007 (also known as R18D), the neuroprotective drug being developed by Argenica, reduces both cellular uptake and aggregation of -syn, two critical components of the progression of Parkinson’s,” Professor Meloni said.

The study investigating cellular uptake in Parkinson’s was published in the journal Biomedicines and the lead author of the publication is Dr Anastazja Gorecki (The University of Notre Dame, UWA and Perron Institute), and the other authors are Ms Holly Spencer (University of Notre Dame), A/Professor Anderton, and Professor Meloni.

“Importantly, additional data recently generated also confirms a dose-dependent inhibitory effect of ARG-007 on -syn aggregation,” Professor Meloni said. “The data demonstrated that as the dose level of ARG-007 increased, so too did the inhibitory effect on -syn aggregation.

“The combination of both sets of data suggests that ARG-007 may also be beneficial for Alzheimer’s disease, as clinical data is beginning to emerge regarding the presence of -syn pathology in patients with that disease.

“Together with data previously presented on the ability of ARG-007 to reduce aggregation of the amyloid beta peptide (A ) associated with Alzheimer’s, this latest preclinical research is very promising.

“It strengthens the scientific hypothesis that ARG-007 may have broader neuroprotective therapeutic potential with possible application in a range of neurodegenerative diseases, including Alzheimer’s and Parkinson’s.”

Argenica’s Managing Director Dr Liz Dallimore said: “The scientific community understands that neurodegenerative diseases are extremely complex, and now we have shown that the aggregation and accumulation of several proteins in the brain appear to be important contributors.

“The ability of a therapy such as ARG-007 to work on a number of these protein aggregates is very important from a scientific perspective, and we look forward to progressing preclinical studies in this area further.”

Newsletter Summer 2023 | 19

Finding a Niche in Parkinson’s Care “Thank you to all our members who have agreed to have the students present during your nursing consultations,” she said.

“This program is in addition to the Parkinson’s education initiatives provided to Curtin Medical students when they are placed with their various healthcare locations.”

Sophie said she was delighted to be included in the program and found it interesting and eye-opening to learn about the different degrees of Parkinson’s that people have.

“Before, I thought it was one just one clinical picture encompassing the neurological condition.”

Parkinson’s WA were delighted to be included in the Curtin University Medical School planning for 2023, introducing doctors in training to the many aspects of Parkinson’s and community based care.

Commencing in July, the program involved two rotations of third year Medical Students, who were placed with the metropolitan Parkinson’s Nursing Team, based at Parkinson’s WA. The students attended visits with their preceptors and enjoyed learning about Parkinson’s, directly from the person with the condition. Having the opportunity to do home visiting was an added bonus that many medical students do not experience. Clinical Nurse Manager, Janet McLeod OAM, said she enjoyed having Sophie as a buddy for five weeks and was looking forward to the next rotation.

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“Following the experiences from the program and being exposed to many people with Parkinson’s and the teams that look after them, I know there’s a big range of symptoms that people have which has really helped me a lot with my future learning and possible career pathways.”

Parkinson’s Nurse Specialist Rachel Marshall was concurrently working with her Medical Student Clara on one of her recent visits to the Parkinson’s WA office at The Niche, Nedlands.

Rachel said she was hopeful that the Medical Students will incorporate the specialist Parkinson’s knowledge and experience into their medical practice in the future.

“The benefits of the Medical students witnessing specialist Parkinson’s care are profound and significant,” she said.

“Not only will it highlight the importance of early recognition of symptoms and referral to a Medical Specialist and the wider multidisciplinary team, it also gives the students a different perspective of how Parkinson’s impacts on the person and the family within the context of their life in the home, workplace and the wider community.”

Clara said she was grateful for the opportunity to further diversify her areas of studies in the field of medicine, and learning about Parkinson’s care had been a unique and engaging opportunity.

“The experience has been invaluable in helping me extend my knowledge on Parkinson’s, beyond the textbooks. Meeting and conversing with an array of patients, who are at different stages of progression has allowed me to see the various ways in which Parkinson’s may present,” she said.

“The nurses at Parkinson’s WA have also shown me the importance of considering every aspect in the patient’s life to cater to each patient’s individual

needs. I’m grateful for the experience and it has undoubtedly sparked my interest in neurology!”

Parkinson’s WA CEO, Adj Professor Yasmin Naglazas said she was delighted that Parkinson’s WA could host this inaugural program.

“It has been in our best interest to safeguard the future of Specialist Parkinson’s care, and this program is a resounding opportunity to activate the medical community and ensure that best practice is carried out across all fields of medicine and nursing. The opportunity to shadow our Parkinson’s Nurse Specialists, is one we have taken immense pride in being a part of,” she said.

Newsletter Summer 2023 | 21

South West Seminar A big thank you to the day speakers; Parkinson’s Specialist News Fiona Roscoe for speaking about her experience and information from the World Congress and Dr Ramesh for a history and update on Parkinson’s and medications with a Q & A. We had 87 people attend which was a fantastic turn out, the feedback from patients and family members was very positive and very informative.

Lifespan Dance Contribution by Linda Macbeth We moved to Australia in 2005 in order to be nearer our children and grandchildren. We settled well and decided to join Kwinana Golf Club where Lachlan spent a great deal of his time.

Five years later, he was diagnosed with early stage Parkinson’s disease. There was slow progression at first, then as symptoms increased, it was suggested that Deep Brain Stimulation might help. After this was carried out, there was a little improvement in his symptoms, mainly tremor, but eventually the tremor worsened, and the golf had to stop. He is now monitored on a yearly basis.

We both really enjoy our Monday mornings at Lifespan Dance in Mandurah with Paige Gordon. It’s something Lachlan can do within his capabilities and it’s definitely the highlight of my week. The inclusion and social interaction is so important to us at this stage of our lives. Long may it continue.

Lachlan and Linda Macbeth, Baldivis Members of the PWA Community

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Parkinson’s Support Groups Have you ever thought about attending one of our support groups? Trish from Kingsley Support Group told us that life changes with Parkinson’s, and it helped to talk about it.

“The community support one another. We come together and talk about the condition and how our lives have changed. We understand each other and that makes all the difference,” she said.

Join one of the Parkinson’s WA Support Groups today!

NORTH and WEST METRO

SOUTH and EAST METRO

Kingsley Western Suburbs

South of The River Rockingham Mandurah Midland

REGIONAL

Parkinson’s Carers South

Bunbury Busselton

55 YEARS and UNDER

Collie

Kings Park

Find out more about your Support Groups!

(08) 6457 7373 supportgroups@parkinsonswa.org.au www.parkinsonswa.org.au/supportgroups

Morley Support Group by Janet McLeod - Clinical Nurse Manager The Morley Support group was well established when I commenced working here in 1998.In fact the organisation which we now recognise as Parkinson’s WA grew from a support group in Morley. Over 40 years ago ‘ Mary’ was diagnosed with Parkinson’s and because she knew nothing about the condition and knew no one with it she rang Graham Mabury, the host of 6PR Nightline programme, and asked for people living with Parkinson’s to get in touch with her in Morley.

Since that time the Morley support group has gone from strength to strength. Originally it was held in the private home of the various leaders and when I arrived it was hosted by Maureen

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Rowles who retired as leader only a few years ago. When the numbers outgrew a home setting, they were delighted to be housed at a local community centre.

The Morley support group is well known for being a very social and supportive network and we thank all the leaders who have helped them achieve this reputation.

Katrina and Karen - Morley Support Group Leaders

Office closure over the Christmas Period The Parkinson’s WA office will be closed from Friday 22 December, and will reopen on Monday 8 January 2024.

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.

HOW TO DONATE

To donate online, scan the QR Code Or visit: www.parkinsonswa.org.au/ donations

Would you like to receive your Parkinson’s WA Newsletter digitally?

Parkinson’s WA is working towards providing our members with the opportunity to receive their Parkinson’s WA newsletter digitally. We can assure you this will be an opt-in process and if you would like to continue receiving a physical copy of the newsletter, this will still be available to you. Through choosing to receive your newsletter digitally, you will be helping Parkinson’s WA to reduce costs, including printing and mailing related expenses. You will also be helping to reduce your carbon footprint!

If you would like to receive your Parkinson’s WA newsletter via email, please contact the office by email - info@parkinsonswa.org.au or phone - (08) 6457 7373.

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11 Aberdare Road, Nedlands WA 6009 Phone: (08) 6457 7373 Email: info@parkinsonswa.org.au

www.parkinsonswa.org.au

ABN: 88 404 764 099