2023 Winter Newsletter

NEWS

Same Walk, New Story

WINTER EDITION 2023

Pictured: The WASAMBA Carnival Drummers strike a beat at A Walk in the Park 2022

This year, we are celebrating our 13th year for our one and only community outreach fundraising event for Parkinson’s WA - A Walk in the Park, at Perry Lake Reserve, Floreat, on Sunday 10 September, from 9am. How will you walk with us?

Celebrating all things community, we will be gathering together under a new direction with the same walk, but a slightly different story.

Bring the family, the kids and the dogs for a picnic and a BBQ as we celebrate our connection to one another with some special activities for the children, garden games and good vibes.

Continued on page 14...

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 WWW.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, PROFESSOR 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 AND DONNA MALLABY

From the CEO’s desk The Board of Management has recently signed off on a revised Strategic Plan for our organisation, which has facilitated a renewed focus on all our business activities.

This is important, as we are small to medium sized not-for-profit (or ‘profit-for-purpose’ as we are referred to nowadays) with limited funds, who are trying to do as much as possible to support those Pictured: Parkinson’s WA CEO individuals living with Parkinson’s.

Adj Professor Yasmin Naglazas We have observed an increasing demand in terms of numbers of individuals living with Parkinson’s in WA, but also an increasing awareness of what constitutes their ‘new journey’ as individuals determine what support they require through the Parkinson’s WA Specialist Nursing Service and associated services. The nursing service is extremely wellregarded, as are the educational resources we provide, keeping our community up-to-date with the latest on Parkinson’s.

We enter the new financial year with a refreshed strategy, and renewed focus on 5 ambitious key areas of priority – diagnosis, treatment and care, support and self-management, cure and organisation/governance. Each day, we work hard to ensure that we are providing what is needed, understanding how we are obliged to show sound stewardship of both government funds and community donations.

NURSE SPECIALISTS’ SECRETARY LENA DIVITO

One of Parkinson’s WA’s strategic intentions is to collaborate with partners and alliances to ensure a better understanding of the care trajectory of those living with Parkinson’s and their families/carers.

Understanding this more will allow us to allocate appropriate resources to meet the increasing needs of those living with Parkinson’s.

DEADLINE FOR NEXT ISSUE PARKINSON’S NEWS 12 OCTOBER 2023

We are committed to ensuring direct and timely access to support, information and treatments that can help people to live better with Parkinson’s, right now.

ADVERTISING ENQUIRIES INFO@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.

One of the aspects of achieving this direct access are the current opportunities that we provide for this to happen. Underpinned by very comprehensive referral pathways, Parkinson’s WA provides telephone support via our main reception 5 days per week, with the service being both immediately supportive for a potential individual requiring reassurance, but also linking in to the established referral pathways that are in place to ensure individuals (living with Parkinson’s or providing care for someone living with Parkinson’s) are provided with the ‘next steps’ to assist with their overall care and well-being. Continued on the next page...

2023 PWA Newsletter I 2

This may involve an initial referral to our Parkinson’s Nurse Specialist Service in the metropolitan area or the South West of WA, followed by our highly experienced nurses organising to connect either initially over the phone (depending on the circumstances) along with a ‘home’ visit. Further, there may be other referral pathways to access support with mobility, sleeping, movement etc.

Part of the role of the Parkinson’s Nurse Specialists is to undertake professional capacity building to ‘improve service delivery reflective of best practice’. We have various strong and established relationships with other health care practitioners working in the neurological sector and remain highly enthusiastic to share the many years of experience and knowledge that our Nurse Specialist team has achieved.

One of the areas that we are currently reviewing is the network of volunteer-led local support groups, to ensure we are providing what is needed to allow their meetings and gatherings to be effective. I understand that we are currently looking for new Support Group Leaders in some areas and I encourage you to get involved in this highly rewarding activity! We are passionate about assisting to build a community of support. Whether you or a loved one is living with Parkinson’s, with the right information and support, you can feel more in control of life with the condition.

A couple key activities for the coming few months include, but are not limited to: •Making it easier for you to get involved with Parkinson’s WA, wherever you live and whatever your income, ethnicity or gender. We want to inspire more people in the community to support our work; and •Strengthening the ways we listen to and collaborate with the Parkinson’s community, and embed this into our work.

Whatever your experience with Parkinson’s, you’re not alone. We’ll be here for you. We look forward to seeing you all at our upcoming events namely A Walk in the Park on Sunday 10 September 2023, with other events being advertised on our website – your ongoing support is very much appreciated!

Yasmin Naglazas Chief Executive Officer

Update from the Parkinson’s WA Office Recently, we have had some big changes in the organisation, and following the resignation of Dorothy Koh, we have recruited a new member of the team to lead our donor relationship management, fundraising initiatives and connect with our support groups. Introducing Kerrin Girando, Parkinson’s WA Fundraising Manager.

Kerrin has worn many hats in the area of Development in Education and ‘For Purpose’ and is passionate about pursuing an organisation’s brand and core values. She has a wealth of experience across brand strategy, planning, Public Relations and reputation management, fostering and promoting positive community relationships, media relations, advertising, marketing, event management, web content management, print management and Fundraising and Philanthropy programs. Leading with her heart, she shares her passions for the Not-for-Profit sector and ensuring that organisations have the best fundraising programs possible to achieve their goals. Empowering others in their philanthropy goals is so special and something that she loves to facilitate!

“I am so incredibly grateful to have the privilege to work for Parkinson’s WA. It is such an honour to meet the community and hear stories from those who have contacted us for support. To play a small part in contributing to the services of Parkinson’s WA provides for these individuals and their families is not something I take for granted,” Kerrin said.

2023 PWA Newsletter I 3

From the Nurses’ Desk Dear Members and Friends, 2023 is shaping to be a year of celebration! Perhaps the quiz below will give you some idea of the excitement we are feeling in our office.

Which of these statements is correct?

• 2023 marks the 25th anniversary of Sex in the City • 2023 marks the 25th anniversary of the City of Joondalup • 2023 marks the 25th anniversary of the Parkinson’s Nurse Specialist Service • All of the above The answer I am delighted to give you, is ‘all of the above.’

Another reason for celebration is when we see research work supported by PWA come to publication. You may not be aware of our commitment to research and the recent work completed

by Yasmin Naglazas to coordinate the two existing Research Committees.

In 2017, Parkinson’s WA supported a research project carried out by Elizabeth Mountford of Endeavor College of Natural Health and her team to investigate Pyrroloquinoline Quinone (PQQ) Influences Intracellular Alpha-Synuclein Aggregates. We are delighted to hear that the work supported by PWA has reached acceptance for publication stage and is now available online as Open Access (OA) via Cambridge University Press in Experimental Results. Visit: https://doi. org/10.1017/exp.2023.10 to read the full version. Congratulations to all involved.

At present, the Nurses Office is not overcrowded as both Fiona and Kayleigh have been to Barcelona to attend the 6th World Parkinson’s Congress. These congresses are the meeting of great scientific minds, new research and personal experiences - for this reason, PWA has always sent two nurses to each Congress. This allows the nurses to attend different sessions as they are run concurrently. We look forward to the seminar Postcards from Barcelona on August 31st when we will hear from Fiona and Kayleigh on the recent developments and research.

Another absence from the office is Jo Chadwick, who is on long overdue Long Service Leave. Janet McLeod is providing cover to Jo’s catchment area and is enjoying meeting you all. She is even becoming more familiar with the roads South of the River!

Yours, The Nurses

2021 2023 PWA PWA Newsletter NewsletterI I64

Dear Nurses, The following Dear Nurses section is in reponse to a recent Community Blog we received about driving and Parkinson’s from Gary. You can read his blog on page 15 of this newsletter.

Dear Gary, We, the nurses, were delighted to receive your blog (see page 15) and felt that our regular Q&A segment was the best place to ‘chat’ with Gary as there were so many similarities between his experience and thoughts and the conversations we have on home visits.

Gary’s early symptoms are very common - it is often family members who recognise the subtle signs that Parkinson’s is making itself obvious. The slowness of reaction time that Gary describes is called bradyphrenia - brady means slow and in Parkinson’s everything can slow down. As a result, we have the ‘Brady Bunch’- slow movements and thinking can result in everything taking longer than it previously did.

We totally agree with Gary in his refusal to refer to this condition as a disease - It was named by a French neurologist Jean Martin Charcot, and he named the condition after James Parkinson hence the name Parkinson’s Disease. In most patients’ groups around the world (and especially here in WA) we try to avoid the word disease.

With regard to your immediate fears about driving following a diagnosis of Parkinson’s, it is a legal requirement that the diagnosis is reported to the Department of Transport WA by the person with the condition. From there, a medical practitioner (GP or Specialist) will complete the required form with options to recommend one of four options: A) B) C) D)

Fit to continue to drive Fit to continue to drive and to be reviewed after 1 year and annually Have an Occupational Therapy based driving assessment Unfit to drive

Parkinson’s WA have a brochure outlining the challenges of driving, the legal requirements involved and the options for transport if driving is not continued. This brochure can be found here: www.parkinsonswa.org.au/page/71/driving-advice-issues Your journey from fear at diagnosis to acceptance of the limitations is inspiring, and for that reason we decided to include your comments and experience in this regular feature. Thank you, Gary

Your Parkinson’s Nurse Specialists

JOIN THE CONVERSATION Follow us on our social media channels 2023 PWA Newsletter I 5

Containers for Change and a Whole Lottie Love Meet Tor and Lottie (as told by Tor, Parkinson’s WA Community Member) I was diagnosed with Young Onset Parkinson’s last July at the age of 49. As it was the school holidays, Lottie, my then 8 year old daughter was with me. Her only question for the Neurologist was, “Is my mummy going to die?”

It was not something I expected. I had been sent by my GP as my podiatrist noticed a strange gait when I walked, and I had told my GP about my big toe curling under and getting stuck in a painful position.

Almost one year on and our lives are very different.

I have given up full time teaching after 26 years, as the additional workload outside the classroom was exhausting me. I now have a one day a week contract in Pre-Primary at a new school and do relief on the other days at local schools.

Our finances have been greatly affected and we watch every dollar we spend. This includes having to move our daughter from her high fee paying school.

Sacrifices have had to be made by everyone as we prepare for the future, whatever that may look like.

For now, I am determined to live in the present. I embrace each day and the joy I get from teaching remains as strong as ever.

My medication is slowly being balanced, so that I can function at optimal level and I am enjoying making new mum friends at my daughter’s new school.

While I am able, I am going to do all I can to raise money for the different organisations that support and carry out research for Parkinson’s.

• • •

In March, my FaceBook birthday fundraiser raised $750 for The Michael J Fox Foundation.

In May, my husband and daughter ran the 4km Run for a Reason, raising $300 in funds for Parkinson’s WA. Three weeks ago, Lottie and I reached out to our local community in Palmyra. I now do a regular run to anyone who has collected Containers for Pictured: Lottie collecting cans (courtesy of Tor Campbell) Change for me.

To this date, we have donated $97 to Parkinson’s WA to support the nurses who do such an amazing job.

It may seem a small amount, but it all adds up. I can’t wait to expand my project, getting more people onboard. Every 10c counts.

I couldn’t do this without the loving support of my husband, Brian and I’m so proud of Lottie for accepting these changes with resilience. Her happiness means everything to me.

Thank you for sharing your fundraising story with us, Tor and Lottie. If you have a great fundraising story to tell, please contact our Fundraising Manager, Kerrin on fundraising@parkinsonswa.org.au 2023 PWA Newsletter I 6

Containers for Change

Thank you for your support to Parkinson’s WA! Donate the cash that’s in your containers to Parkinson’s WA We have been inundated with generous support for our community through the Containers for Change program. All donations are listed anonymously so we are not able to reach out to you personally, however, we thank everyone who has supported us through this scheme.

You can help us in this way by cutting out the voucher on the left and taking it directly to your local centre, nominating Parkinson’s WA as your preferred organisation. Learn more at: www. containersforchange.com.au/wa/where-toreturn where you can find your local drop-off point.

Thanks for your support!

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.

Pictured: Support Group Leaders’ Workshop Right: Parkinson’s WA community members

Find a Parkinson’s WA Support Group near you!

NORTH and WEST METRO

SOUTH and EAST METRO

KINGSLEY

SOUTH OF THE RIVER

MORLEY

ROCKINGHAM

WESTERN SUBURBS

MANDURAH

REGIONAL

MIDLAND PARKINSON’S CARERS SOUTH

BUNBURY BUSSELTON

55 YEARS and UNDER

COLLIE

KINGS PARK

Find out more about your Groups!

Need more information? Get in touch!

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

www.parkinsonswa.org.au/supportgroups

2023 PWA Newsletter I 7

Save the Date Legal Planning Seminar (FREE) When: Tuesday 15 August 2023 Time: 10am-12pm (approx) Location: The Niche, 11 Aberdare Road, Nedlands Presenter: Ross Harrison, Consultant, Commercial and Succession Planning, Cullen Macleod Lawyers RSVP: Call the Parkinson’s office on 6457 7373 or email info@parkinsonswa.org.au to RSVP by 10 August.

Postcards from Barcelona When: Thursday 31 August 2023 Time: 10.30am -1pm About: Feedback from the 6th World Parkinson’s Congress with speakers Fiona Roscoe and Kayleigh Rawle, Parkinson’s Nurse Specialists Location: The Niche, 11 Aberdare Road, Nedlands Cost: Members - $10, Non-Members - $15 RSVP: Call 6457 7373 or email info@parkinsonswa. org.au to RSVP by 24 August.

A Walk in the Park When: Sunday 10 September 2023 Time: 9am -1pm (approx) Event: Join us for the one and only community outreach event and fundraiser for Parkinson’s WA, A Walk in the Park, for the 13th year.

Location: Perry Lakes Reserve, Floreat Newly Diagnosed Seminar - Perth When: Saturday 7th October 2023 Time: 10.30am - 1.00pm (approx)

Presenters: Geriatrician Dr P Ramesh, Hollywood Consulting Centre, Bunbury, Busselton will speak about Parkinson’s and treatment options. A panel of Parkinson’s Nurse Specialists will answer questions in a Q&A format.

Cost: Members: $15, Non-Members: $20 Morning tea provided Location: The Niche, 11 Aberdare Road, Nedlands RSVP: Call the Parkinson’s office on 6457 7373 or email info@parkinsonswa.org.au by Thursday 28 September to confirm your attendance.

Newly Diagnosed Seminar - Bunbury When: Wednesday 11th October 2023 Time: 1.00pm - 4.00pm (approx) Presenters: Geriatrician Dr P Ramesh, Hollywood Consulting Centre, Bunbury, Busselton will speak about Parkinson’s and treatment options. The South West Parkinson’s Nurse Specialists will answer questions in a Q&A format.

Cost: Afternoon tea provided by gold coin donation Location: Community Home Care, 3 Parade Road, Bunbury RSVP: Call the Parkinson’s office on 6457 7373 or email info@parkinsonswa.org.au by Thursday 5 October to confirm your attendance.

Stay connected to our events through our website www.parkinsonswa.org.au/events

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 digital versions of the Parkinson’s WA newsletter. We can assure you this will be an opt-in process and if you would like to continue receiving physical copies of the newsletter, this will still be available.

Through choosing to receive your newsletter by email, 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) 645777373.

2023 PWA Newsletter I 8

Esteemed WA Neurologist recognised in the Australian Honours - Perron Institute Clinical Professor David Blacker’s recognition as a Member of the Order of Australia (AM) for services to medicine and neurological research is an honour truly deserved, said Perron Institute Chief Executive Officer, Steve Arnott.

“Professor Blacker is an inspiring role model, renowned for his dedication to improving the lives of people suffering from neurological conditions, and we are fortunate and proud to have his services as the Perron Institute’s Medical Director.

“As one of Australia’s leading neurologists, he has made an outstanding contribution in expanding scientific knowledge in this field.”

Professor Blacker is a Clinical Professor of Neurology at The University of Western Australia and a consultant neurologist and stroke physician at Sir Charles Gairdner and Hollywood hospitals.

In 2018, he received the Stroke Foundation Award for Excellence in Stroke Care Delivery in WA. As a consultant neurologist and clinical research fellow at the Perron Institute, Professor Blacker has contributed to stroke rehabilitation projects including psychological approaches with mindfulness, direct current brain stimulation, robotics and virtual reality.

He also has an ongoing collaboration with the Perron Institute’s Experimental Stroke group (Meloni and Knuckey) working on neuroprotection.

“The current neuroprotective studies with Argenica Therapeutics, if successful, will open the way for a huge advance in stroke management, protecting the brain from deterioration while patients are transferred from remote sites to centres where intervention therapies can be performed,” Steve Arnott said.

Professor Blacker was diagnosed with Parkinson’s disease five years ago and began researching innovative techniques to slow its progression.

He led the FIGHT-PD study of non-contact boxing exercise with Golden Gloves boxing champion Rai Fazio, showing the beneficial effect of highintensity training for people with early-stage Parkinson’s.

“Professor Blacker is an outstanding advocate for the fight against this disease and many others,” Steve Arnott said.

“All at the Perron Institute congratulate him on his recognition in the King’s Birthday Honours 2023.”

Pictured: Professor David Blacker at the Perron Institute (supplied)

Article supplied by Perron Institute 2023 PWA Newsletter I 9

Why Choose Parkinson’s WA for Fundraising

by Fundraising Manager, Kerrin Girando

Parkinson’s WA relies on generous donations from everyday West Australians just like you

to enable us to continue our community-based Parkinson’s Nurse Specialist Service that provides personalised care to the individuals and their families with Parkinson’s. There are a number of ways you can support us to make a difference, below are just some of the areas of giving that you can be involved with.

Regular Giving Make a difference with an ongoing donation, join our community of regular givers. Regular giving is the most cost-effective form of giving for a charity and because your donations are ongoing.

Workplace Giving Workplace Giving makes donating easy, it is a joint relationship between employers, employees, and charities. Your employer will take out your donation from your pre-tax salary and send it directly to Parkinson’s WA. Community Fundraising Create your own fundraiser and make a difference. Community Fundraisers are truly inspirational people with the passion and energy to create their own event.

Whether your event is big or small, indoors, or outdoors, on one day or throughout the year, you can choose whatever suits you.

Cause-Related Marketing Cause related marketing is a partnership between an organisation and Parkinson’s WA, where the business sells a product or service with a portion of the sales going to Parkinson’s WA. Donations in Lieu Most people have just about everything they need, so why not give a gift that will really make a difference to someone’s life? Donations in lieu of gifts are a memorable way to celebrate your special event, whether it’s a birthday, wedding, anniversary, or Christmas. We have a specialised platform that will assist you with creating something special.

A gift in your will Gifts in Wills are a meaningful and powerful way to support the work of Parkinson’s WA. Making a gift in your Will won’t impact on your lifestyle today but will make a difference in the future.

After making sure that your family and loved ones are taken care of, a gift in your Will ensures that people living with Parkinson’s benefit from your legacy.

Want to get involved?

If you would like to support Parkinson’s WA in any way at all, please contact our Fundraising Manager Kerrin to discuss how we can help you make a lasting impact. You can reach Kerrin (pictured above) on fundraising@parkinsonswa.org.au or on her direct line: (08) 6457 3745.

2023 PWA Newsletter I 10

Shaving for a Cause Recently, we have been thrilled to celebrate the amazing efforts of our Collie fundraiser Leanne, rallying behind the Collie Support Group and our South West Parkinson’s Nurse Specialist (PNS), Donna (pictured together - right).

Following months of local momentum, Leanne bravely took the plunge and shaved her head to raise funds and awareness for our PNS service in the South West.

It was personal for Leanne, whose sister Karen has Parkinson’s, and she said she was inspired by her and wanted to raise funds for the regional PNS service.

The beautiful people from the Collie Support Group including Sandra Robertson (the Support Group leader) came together for the local community living with Parkinson’s.

Shenae from Iridescent Studio volunteered her studio and her time to do the actual shave for Leanne, which was decked out with Parkinson’s WA banners, brochures, support group flyers and donation tins, all supplied by PNS Donna, as she flew the Parkinson’s flag proudly for the day.

Following the shave, Leanne took to the streets and approached businesses one a time, advocating for the regional offerings of the Parkinson’s Nurse Specialist Service.

Donna said she had been inspired by Leanne’s efforts to raise money for Parkinson’s WA, and having known her sister, Karen, she was thrilled to walk alongside her on the journey and assist a champion for the cause.

“It always warms my heart, to see small communities coming together to support each other, and making a big impact. For Leanne this was not just about raising funds for the PNS service but increasing the awareness of Parkinsons in the community,” Donna said.

So far, Leanne has raised nearly $2,000 for Parkinson’s WA - an incredible effort!

There’s still time to donate to Leanne’s shave, and you can make a donation by visiting her fundraising page: https://friends-of-parkinsons-wa. raisely.com/leanne-brockwell

Pictured: Leanne, following the shave. (supplied)

Every dollar counts, so please dig deep to support Leanne and our core community service.

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A Day in the Life of a South West Parkinson’s Nurse Specialist (PNS) Written by Donna Mallaby, Parkinson’s Nurse Specialist The wonderful thing about being a Parkinson’s Nurse is that no day is ever the same. Every single day has the potential to be different, energising, engaging and so very rewarding, why? Because I get to see you!

As Parkinson’s Nurse Specialists, we have the privilege to be invited into people’s homes to assist and review their needs, chat with carers and provide education and support, where it matters. You get to see the impact and change of your home visits which is incredibly rewarding.

We need Volunteers!

Have you ever felt like you wanted to belong to something bigger than yourself and contribute your spare time to meaningful work? Your Parkinson’s WA team need you!

For our upcoming A Walk in the Park event on 10 September, we are short many volunteers and need more people on the ground to support our wonderful community. If you know of anyone who could help, please reach out to us and help us make this a wonderful day out at Perry Lakes for the whole family!

What to expect during a PNS visit you ask? Lots of questions. The more information you can share with us, the better we can help you. I have met some wonderful individuals; retired farmers, business owners, principals, administration workers, authors and artists.

My highlight would be getting to know the person behind the diagnosis. I’ve had games of darts (I lost), fed horses and goats, played instruments and hung out washing.

My week usually starts out on the road visiting patients in their homes, hospitals and care facilities all over our beautiful South West region. The later part of the day, I’ll settle into my favourite room of the house, my beautiful home office. I complete patient follow-up calls, make bookings, and check and send any emails that may have come through during the day. This is a great time for me to consolidate my day and plan for tomorrow’s adventure.

Please contact the office on (08) 6457 7373 or email info@parkinsonswa.org. au for more information.

The later part of my week is when I spend the day busily typing my nursing assessments from that week. This is an integral part of our PNS role that maintains those links between your Medical Specialists and you.

Our friends at AT Chat love Assistive Technology (AT) and they are keen to get in touch with story-tellers who use a range of AT in their lives to manage their Parkinson’s symptoms effectively.

Another part of our role is educating other health professionals on Parkinson’s. I have come from a Staff Development background, so education and support are passions of mine. I enjoy attending various Parkinson’s Support Groups monthly and hosting our SW PD Seminars for ongoing education in the community.

I feel very privileged to have a wonderful career working alongside an amazing team of nurses and collaborating with local health professionals. This allows me to thrive and grow with new challenges and to support our lovely community throughout their Parkinson’s journey.

Put the kettle on, I’ll be there soon.

Calling all Assistive Technology (AT) story-tellers!

AT Chat is keen to pay people to write content for them which would be hosted on their website as they talk about their ‘AT experience’. Are you the next AT story-teller from the Parkinson’s community?

Please visit AT Chat to find out more: www.atchat.com.au or contact Engagement Officer Gail Stacey at gail.stacey@ilaustralia.org.au

2021 PWA2023 Newsletter I 13 PWA Newsletter I 12

Dancing for Parkinson’s Lifespan Dance Spotlight - Ken and Margaret Atkinson Ken and Margaret Atkinson (aged 91 and 93 years respectively) have recently joined Seated Dance classes in WA. Speaking about the Seated Dance classes Margaret says “I love the different themes and the music.

The class is taught in an innovative way, engaging all of us in the movement, so I commend Paige as the teacher. Ken finds class beneficial as many of the movements are in his physio workout, but dancing them is much more enjoyable. Dancing is good for the brain, the physical exercise, social interaction and enjoyment”. Ken and Margaret Atkinson have had a lifetime of dancing together. Margaret studied ballet with Rene Estler and ballroom at the Johnny Parenthorne Studio.

Ken was dancing and competing with his dance partner Joy. It was at this studio that they met. (Pictured right on their wedding day and then a current photo)

Ken was part of a Formation dance team with Bob Wrightson, which travelled by road across Australia to compete in Adelaide, Melbourne and Sydney in the 1950’s creating the Australian Formation Ballroom Championships. Ken and Margaret maintained their love of dancing throughout their lives, with Margaret teaching ballet at Terri Charlesworth. Their daughter, Diedre was also a talented dancer, now Head of Dance at John Curtin College of the Arts.

Ken and Margaret returned to Ballroom dancing when Ken retired at 65, joining the over 50’s Ballroom dancing Club. Ken was club president for six years. During this time they formed a Sequence Dance team to perform in various Aged care homes which continued until Covid. Ken was responsible for organising very successful excursions and balls to various regional centres connecting to other ballroom clubs Geraldton, Kalgoorlie, York, and Albany. They continue their dancing with Ballroom and Seated Dance.

Story credit to Dance for Parkinson’s Australia for the article

Matched Giving for Parkinson’s WA Allan Penaranda, Project Manager at Q Design and Construct and supporter of Parkinson’s WA, was recently entitled to claim a referral bonus from his employer for having referred a person to a position they were actively recruiting for. This is not an uncommon reward in many companies looking to attract people to fill vacancies in the current skills shortage and low unemployment. What is less common about this story, is Allan’s challenge he put to his employer. Allan proposed QDC Match the $5000 bonus he could claim so that QDC pays $10k to his charity of choice instead of Allan receiving any financial benefit. The Directors of QDC welcomed and celebrated this gesture, resulting in a donation to Parkinson’s WA of $10,000.

Allan’s support for Parkinson’s Western Australia stems from the care, research and support provided to his mother who was diagnosed with Parkinson’s over four years ago.

Pictured above: Allan Penaranda with his mother and alongside QDC Managing Director Damon James.

We are so appreciative of the support from Allan and QDC, for matching his incredible gift in honour of his mother’s care. We celebrate this wonderful moment that they have offered to our service to enhance the community-based nursing care that we deliver.

2023 PWA Newsletter I 13

This September, we focus on family connections The Wasamba Carnival Drummers will be creating the ambience and energy as we prepare to walk together, and leading the way through the park, we walk with one voice and one message, for a hope that we can bring the conversation about Parkinson’s out of the shadows and into the community.

This event raises essential funds for those affected by Parkinson’s in the WA community by contributing to the unique community-based Parkinson’s Nurse Specialist service, with a range of other assistance initiatives such as Seminars, Support Groups and Carers Groups. The registration form is on the back of this newsletter.

QR CODE

Join us on September 10 as we walk together once more and embrace our Parkinson’s journey as one collective presence.

Register now for special ‘early bird’ options online: https://parkinsons-wa-awitp-2023.raisely.com or scan the QR Code above for more information.

2023 PWA Newsletter I 14

My Parkinson’s and Me - A community blog by Gary Triffitt Hindsight is an interesting notion. It allows one the luxury of looking back at one’s life and saying “Ah, yes! That is where it went wrong!” I was aware that there was some sort of problem gathering.

I developed a shuffling footstep, particularly with my right leg and started to have balance problems which became worse over a period of about two years. My wife remarked that I was getting slower in my reaction times and responses and came across as quite stupid.

Eventually, my younger son, who is an experienced physiotherapist, remarked “Dad, next time you see your GP, ask him if there is any chance you have Parkinson’s”. I never got to ask! As I headed for his surgery, Dr. Mark watched my approach and said, “As I followed you across there I wonder if you don’t have Parkinson’s!”.

So, my fate was sealed!

Parkinson’s (I refuse to call it “Disease”, as this implies it is contagious) is a progressive failure of a gland located in the brain to produce a hormone called dopamine.

The cause is unknown. Treatment is primarily administering synthetic dopamine, together with particular exercises aimed at strength and coordination. Sufferers are affected in a multitude of different ways. Balance, strength, dexterity, coordination, decision making, and hand trembles are the main symptoms in various combinations.

When I was diagnosed with Parkinson’s I was also forced to give up my driver’s license. I resented it immensely and plotted and schemed to get around it. Despite the smart-arse comments from members of my family, I was an excellent driver, and knew it! In 64 years behind the wheel, during which I drove hundreds of thousands of miles, I had 4 major accidents, only one of which was undeniably my fault – I went to sleep at the wheel

and ran off the road! In the other three, I got in the way of other driver’s accidents. I drove up and down and around Australia, a country the size of Europe, and also in Sweden and England. Living in Darwin and Karratha and meeting up with families in Melbourne and Hobart for Christmas, and holidays at random locations (Goolwa, Robe, Coff’s Harbour, Bribie Island).

However, I was aware from the media that there were occasional accidents involving elderly drivers, who appeared to have lost control of their cars.

They ploughed into pedestrians, crashed into buildings by reversing unintentionally, and etc.

On occasions, some number of people were killed or seriously injured.

Hmmm!

Noting I am not the worst driver on the road, I agreed to have a specialist assessment of my driving skills. In any case, there was concern over how quickly I would respond in an emergency which could be caused by others as well as myself. After wasting several hundred dollars I gave up. (I was never “ready” so missed multiple appointments! My perception was that I was perfectly able to drive. My fear was that I wasn’t. Ultimately, I realised that this was so.)

So why am I subjecting you to this diatribe? My Parkinson’s appears to have stabilised, but in recent weeks I have noticed, on occasions, that I have been unable to stop what is happening on my motorised wheelchair. That is to say, there are times when I can’t halt, or cease turning. Is it possible that this development of Parkinson’s is a major ingredient in the loss of control by others, mentioned above? If that is so, and I believe it is, then I am grateful to all those who were involved in persuading me to give up my license. The last thing I would want is to have a death or serious injury on my conscience.

This account is offered to help those on similar life journeys.

2023 PWA Newsletter I 15

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