2022 Spring Newsletter

Thank you to our amazing Sponsors for A Walk in the Park 2022.

You made this event possible!

NEWS

SPRING EDITION 2022

We walked together for Parkinson’s WA! On Sunday 11 September, we walked for Parkinson’s WA (PWA), joining approximately 1000 community members who brought along their family, friends and dogs. The 12th Annual Walk in the Park event is PWA’s biggest and most successful fundraiser and the 2km and 5km walk options are offered each year at the picturesque Perry Lakes Reserve, Floreat.

The colourful, energetic Wasamba Carnival Drummers led the procession and gave a momentous sendoff to the crowd as they took their first steps. Member for Nedlands Dr Katrina Stratton joined us at the event with her daughter and dog Millie.

Parkinson’s WA Community member Raymond joined his family for the second year to show their support for people living with Parkinson’s.

“The walk is a good opportunity for family and friends to support us and to raise awareness about Parkinson’s. It’s good for family and friends to be included so the person with the condition is not left alone in the community,” he said.

FOLLOW US:

CONTACT US:

MAJOR SUPPORTERS:

T: (08) 6457 7373 E: info@parkinsonswa.org.au W: www.parkinsonswa.org.au

MCCUSKER CHARITABLE FOUNDATION

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.

Continued on pages 4-5

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

Brenda’s Bulletin

Celebrating our winners Val and Suzanne Saunders we celebrate you!

Volunteer of The Year Award Val and Suzanne Saunders Val and Suzanne organise and chair the monthly Bunbury Parkinson’s WA Support Group as well as the Parkinsong Group every Friday. For their ongoing effort and support of the Bunbury Parkinson’s community, we recognise Val and Suzanne Saunders for the Volunteer of the Year Award.

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, RYAN O’CONNOR CHIEF EXECUTIVE OFFICER BRENDA MATTHEWS OFFICE MANAGER TOBY GUMMER DONOR RELATIONS MANAGER DOROTHY KOH FINANCE MANAGER SALIL KOONJA COMMUNICATIONS COORDINATOR 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 NURSE SPECIALISTS’ SECRETARY LENA DIVITO COUNSELLOR POSITION VACANT

DEADLINE FOR NEXT ISSUE PARKINSON’S NEWS 14 JANUARY 2023 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.

We certainly were all blessed with a wonderful sunny day on Sunday 11th September for our 12th Annual ‘A Walk in the Park.’ A big thank you to our corporate sponsors, volunteers, stall holders, caterers and entertainers. Thank you to all our participants; it was great to see so many family members and familiar faces.

Another thank you to the members who attended our AGM on 26 October – good governance is an important part of the running of the organisation.

The AGM is also a time when we recognise and thank our award winners in the following categories: Volunteer of the Year, The Geoff Pride Fundraiser of the Year, The Community Spirit Award and Allied Health Professional Award. There are plenty of pictures and information about the events I have mentioned above, in the newsletter, on Facebook and on our website.

I think it is about time I mentioned the importance of exercise for the Parkinson’s community – Just do it!! There are plenty of suggestions from: Walking, Tai Chi, Yoga, Boxing, Dancing – all very good – Just do it!

To my Nepal followers: Since I last wrote – I have been back again to the Nar-Phu Annapurna area for 22 days – two passes of 5300M and one of 5000m!! Amazing views – could not be better – but at the end of the trek – low cloud, so no fixed wing flights, landslides, so no Jeeps – so more helicopter lift out – all absolutely worth it.

The greater danger for most of us is not that our aim is too high and we miss it, but that it is too low and we hit it.

(Michel Angelo).

Take Care Brenda

2022 PWA Newsletter I 2

Sandra supports Collie!

Allied Health Professional Award Sandra Robertson Sandra, a Registered Nurse at Collie hospital, has helped re-establish the Parkinson’s WA Support Group in Collie.

Sandra volunteers her own time every 3rd Tuesday of the month to attend and run the support group. For her assistance in helping Parkinson’s clients and their carers continue to meet monthly, we recognise Sandra Robertson for the Allied Health Professional Award.

“I do this for my Community.

What is important for me is to be part of a healthy community that is connected, accepts, cares and respects each other and gives one another the sense that they are welcome and belong no matter what their situation is. I have had a blessed life and truly believe the more I give the more I get back.”

Sandra Robertson

Richard Seale has Community Spirit!

Community Spirit Award Richard Seale During 2022, Richard has given his name and artistic talents to Parkinson’s WA by acting as photographer for the Parkinson’s WA nursing service brochures.

He introduced newer technology, which makes coping with staff changes seamless. In addition, his work on the video of Raymond’s Story was artistically executed while maintaining accuracy concerning symptoms and portraying a suitable message to the public.

For his excellent work and assistance to help the wider Parkinson’s community, we recognise Richard Seale for the Community Spirit Award.

2022 PWA Newsletter I 19

We are Parkinson’s WA (PWA) and this is what we do.

Each year, we celebrate our most esteemed PWA community members who have contributed their time, energy and passion to support the work we do. Announced at the AGM on October 26.

We celebrate Kara Divito for her 8 years of contributions to PWA! Volunteer of The Year Award Kara Divito Kara has been volunteering for PWA for the past 8 years. Any task, requiring a pair of hands, Kara has participated.

From admin jobs, to being a key volunteer at the annual ‘A Walk in The Park’ to giving up her Saturday mornings whenever we hold seminars.

Kara is graduating this year with a Bachelor of Education, specialising in Primary Education. We are so proud of Kara; she is truly one of us at PWA. We acknowledge Kara’s eight years of service and we wish Kara the very best in her future endeavours.

Congratulations to the Parkinson’s WA Award winners!

Today we honour the amazing Elizabeth Curtis!

Geoff Pride Fundraiser of The Year Award Elizabeth Curtis Elizabeth Curtis has devoted this entire year to fundraising for Parkinson’s WA. Her calendar is filled with an amazing list of fundraising ideas and activities. There is a lot of hard work involved. She organises many small fundraisers throughout the year, ranging from sausages sizzles, raffle draws to laboriously collecting bottles for recycling. Elizabeth is inspired by her friends who live with Parkinson’s.

“Despite their condition, they have bravely and positively dealt with the daily challenges,” she said.

Her mantra is ‘Together as a community, we can do more to support the Parkinson’s Nurse Specialist service.’

For her dedication and trust in PWA, we recognise Elizabeth Curtis for the Geoff Pride Fundraiser of The Year Award.

“I have so much respect and admiration for people with Parkinson’s. Raising funds and awareness is the least that I can do with the help of my friends and the cycling group network.”

Welcome to another edition of your Newsletter!

Meet Donna!

We are delighted to welcome our new South West Parkinson’s Nurse Specialist, Donna Mallaby to the Parkinson’s WA Team.

We sat down with Donna and asked her some questions to give you the opportunity to get to know her better!

1. What is your role at Parkinson’s WA? I am the Parkinson’s Nurse Specialist for the Southwest Inland region.

2. What is your favourite part about working for Parkinson’s WA? I feel very privileged to visit such amazing inspiring people every day. To be able to visit people in their homes, sit down and take the time to assess, educate and answer questions is so rewarding and fulfilling. It’s lovely to feel like you are making a difference to people’s lives, and I have the opportunity to learn something new every day.

For her ongoing assistance, we recognise Kara Divito for the Volunteer of the Year Award.

“Volunteering at PWA has enabled me to be a part of something bigger than myself and to be immersed into a community that puts the needs of others first. I have been volunteering at PWA since I was in my early teens, when I assisted with simple office tasks like stamping envelopes and binding booklets. As I got older, I was eager to get involved in bigger tasks within the organisation and thus I found myself helping with the newsletter mail outs, packing orders, running the shirt

Update from the Parkinson’s WA Office 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.

3. What do you like to do on the weekends and in your spare time?

“Through these opportunities I have been privileged to meet others who generously give their time and have been able to witness the impact of these selfless acts of kindness.” sales and registration tent at the annual ‘A Walk in a Park’, and assisting with AGM and seminar meetings. It is because of this, that I endeavour to continue assisting organisations like PWA in the future, as I know that no matter how small my actions are, they are part of a bigger picture.”

2022 PWA Newsletter I 18

I enjoy travelling, yoga, the gym and singing. I also have a beautiful 6-year-old daughter, and we love walks on the beach with our pet Labrador who my daughter calls ‘Knucklebrain’. His name is Bolt.

4. What do you think the Parkinson’s community would be most interested to know about you?

I am studying to be a qualified 500hr Yoga Teacher. I would love to potentially offer a Parkinson’s inspired yoga class, pranayama and meditation sessions for people with Parkinson’s in the future.

2022 PWA Newsletter I 3

We Walked Together for Parkinson’s WA! Almost 1,000 people joined the 12th

Research Update: Exercise and Parkinson’s An exciting study on mice emphasises the importance of exercise for people living with Parkinson’s. - Research News

annual A Walk in The Park fundraiser on 11 September at Perry Lakes Reserve, Floreat.

For several years, exercise has been promoted as a new treatment for Parkinson’s and all clinicians involved in the care of people with Parkinson’s have ‘prescribed exercise’ as a method of delaying the progression of the condition. However, there has been little understanding of how this works at a cellular level.

People living with Parkinson’s, multiple generations of families and friends, and many excited dogs took part in the walk which is supported by our amazing volunteers, many of whom are from Curtin University.

A recent study from John Hopkins University School of Medicine USA looked at the action of irisin, a small exercise-induced polypeptide secreted by skeletal muscle into the blood of mice and humans. Irisin levels increase in the blood of humans with exercise training.

It has previously been recognised that irisin led to improved cognitive function and lower inflammation in a mouse model of Alzheimer’s which is also a neurodegenerative condition. The researchers motivated by the knowledge of the benefits of exercise looked at the action of irisin on alpha synuclein fibrils that are the hallmark of Parkinson’s.

The MC, Jenny Seaton got the crowd ready for the 2km and 5km walk. WASAMBA Carnival Drummers once again set the beat for the walk with their explosive drumming and flamboyant costumes. We were again very pleased to have the Perth Charity Band: Here to Help, a group of UWA medical students who kept the crowd mesmerised with the mellow tunes, which helped to create a lovely Sunday vibe in the beautiful Spring weather. What a day! We hope you all had as much fun as we did. We look forward to seeing you all again next year!

Initially, a cell model had been challenged by the addition of preformed fibrils of the alpha-synuclein protein - this prompted naturally occurring alpha-synuclein in the cells to misfold and accumulate as they do in Parkinson’s.

They found that when this cell model was treated with irisin, the formation of toxic alpha-synuclein was prevented and the nerve cells were protected from dying.

The team then injected preformed fibrils into the brains of mice to produce an animal form of Parkinson’s. Some of the mice were injected with irisin and some were not (a controlled study). The results showed that the mice given irisin showed a 25% loss of cells compared with a 60% loss in the mice that did not receive the irisin. Irisin also prevented the turnover of dopamine effectively increasing dopamine levels and blocked the accumulation of toxic alphasynuclein.

Importantly, motor symptoms usually associated with the Parkinson’s model were eased in the mice given the irisin but not

2022 PWA Newsletter I 4

in the untreated mice. Other benefits of irisin were observed and the researchers are hopeful that further studies and translation into a human

model will add to the body of knowledge that exercise can slow the progression of Parkinson’s.

Until we have that knowledge, it seems basic common sense to introduce exercise into your daily routine.

References: Dawson, TM. et al. Amelioration of pathologic a-synuclein-induced Parkinson’s disease by irisin, 2022, PNAS Vol. 119, No 36 e2204835119 Parkinson’s News Today Shapiro L. PhD. September 8th 2022

2022 PWA Newsletter I 17

Containers for Change

Thank you for your support to Parkinson’s WA! Donate the cash that’s in your containers to Parkinson’s Western Australia We have been inundated with the 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 cut out the voucher on the left and take it directly to your local centre, nominating Parkinson’s WA as your preferred organisation.

Learn more at: www.containersforchange.com. au/wa/where-to-return 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.

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

NORTH and WEST METRO KINGSLEY MORLEY WESTERN SUBURBS PARKINSON’S CARERS NORTH

55 YEARS and UNDER

SOUTH and EAST METRO

REGIONAL

BULLCREEK/LEEMING

ALBANY

FREMANTLE/MELVILLE

BUNBURY

ROCKINGHAM

BUSSELTON

MANDURAH

COLLIE

MIDLAND*

NORTHAM*

PARKINSON’S CARERS SOUTH

ESPERANCE*

KINGS PARK

* PLEASE CONTACT THE PARKINSON’S WA OFFICE FOR UPDATES.

For more information regarding our support groups, call: (08) 6457 7373, email: info@parkinsonswa.org. au or visit www.parkinsonswa.org.au/page/114/ support-groups

Pictured: Members talk to PNS Fiona at the Kingsley Support Group. Above: Richard and Trish, Parkinson’s WA community members

A Walk in the Park 2022

Thank you for your support for AWITP! We raised an amazing

$52,167

This would not have been possible without the efforts of our whole community, including our dedicated fundraisers, families, members, volunteers and sponsors.

Thank you for supporting PWA. We would like to acknowledge and thank all our fundraisers who have worked behind the scenes, raising money for Parkinson’s WA for many months leading to event day: Movers & Shakers, Sue’s Heroes, Donna Murray’s Team, Diddycool, Geoff Waldock and Mary Lorraine-Mitchell’s Team, just to name a few. Thank you to all our 45 volunteers, many are students from Curtin University. We offer a special thanks to Angela Sideris, David Burton, Ed Hill, Gill Palmer, Mario Divito and Pat Chadbourne for your many years of volunteering at this event. With your help, the event captured the heart of the community. A big thank you to Parkinson’s WA staff, Board members and family members for your support on event day. We are overwhelmed with emotion and incredibly grateful for your time, efforts and commitment.

Thank you to the incredible live performers WASAMBA Carnival Drummers and Perth Charity Band: Here to Help. You set the tone, built the atmosphere and engaged the people with your energetic and enthusiastic spirit.

You not only give up your time free of charge, you are part of this community and we thank you.

2022 PWA Newsletter I 5

2022 PWA Newsletter I 16

From the Nurses’ Desk Dear All, As we go to print, we have the Nurses office running at full capacity - which really means everyone is back from annual leave! As you can see from elsewhere in the Newsletter, we Nurses have a great variety in our work diaries. Home visits are our top priority with education sessions and visits to support groups running a close second.

Then we have the challenge of our reports and telephone calls! None of these things happen without a lot of planning and deskwork going on in the background. Even though our practices changed with Covid, for example working from home and more telephone follow-ups, the demand for our services certainly outstretches the time available for it.

Mikhail Gorbachev said, “Parkinson’s Law works everywhere”. It is definitely the case in our Nurse’s office.

It is hard to believe that in November 1998, one Parkinson’s Nurse was appointed to cover the entire metropolitan area and that she is still standing!

This year we celebrate 24 years, and our team has grown to eight nurses.

Thank you to the entire team and all those who have worked with us previously over the past 24 years. You are an awesome team.

Parkinson’s ‘hacks’

The Carriage Clock

We recently heard from our Parkinson’s WA community member Maggie about her latest Parkinson’s Hack!

From our Community A poem by Roger Palmer

If you have trouble tying shoelaces, you can have them replaced with Velcro closings.

Obviously, it can’t be done with all types of shoes but it worked brilliantly with my trainers.

Gadean Shoes (08) 9248 6533 did mine and I think Wembley Shoes (08) 9387 5507 will too. Ring first for a price estimate there can be a big difference. This has made my life so much easier!

Yours Janet McLeod (PNS since 1998!)

Are you aware that there is an adage known as Parkinson’s Law?

Thank you Maggie for sharing your Hack!

This states: ‘Work expands so as

to fill the time available for its completion.’ This statement was first

published by Cyril Northcote Parkinson and was inspired by his time in the British Civil Service. It is reported that even the late

Parkinson’s WA is looking for input from our community

to create a series of Parkinson’s ‘hacks’ to benefit people in Western Australia living with Parkinson’s. A ‘hack’ is a novel idea which could benefit others by sharing.

If you have a ‘hack’, tip or trick that has helped you manage your Parkinson’s, and you would like to share with other people living with Parkinson’s, please reach out to us - we would love to hear from you!

You can send us an email at communications@parkinsonswa.org.au 2021 2022 PWA PWA Newsletter NewsletterI I66

The time piece was a carriage clock, of construction solid brass, And panels all around, being beautifully beveled glass.

An English aunt the owner, for many years until, It came into my possession, at the reading of her will.

The years had not been kind, it looked quite down at heel.

The cogs and gears were frozen, it lacked a balance wheel.

The most that could be said was, it exactly told the time, Correctly twice a day, if you peered through the grime.

I decided that it deserved, a better life than this, So I carefully deconstructed it, my skill perhaps hit and miss.

I cleaned and oiled each tiny part, axle wheel and screw, Until its shiny countenance, gleamed like it was new.

When I put it all together again, I noticed with concern, I had a pinion and a cog wheel left, no place for them to turn.

Now I use this fancy time piece, for the regulation of my pills.

Important for my wellbeing, and to cure all my ills.

Since I finished off this project, I have a sprightly step, And I notice that I’m feeling, rather grand and full of pep.

For a double dose of medicine, keeps my ailments at bay, Because the clock now runs much faster, with 48 hours in each day.

Roger Palmer

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!

We have openings within the Nedlands-based office that desperately need filling with another set of hands. Can you contribute your time to support the Newsletter mailout, general admin tasks and office allrounder support?

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

2022 PWA Newsletter I 15

Gifts in Wills Wills and Estate Planning Is a Will enough?

People commonly believe that having a Will is enough when it comes to getting their affairs in order and planning for and safeguarding their family’s future. Whilst every adult person should make a valid Will, the Will is the end-product of the important estate planning process.

Did you know that if you die in Australia without a Will (known as dying “intestate”), your assets are distributed according to a pre-determined, statutory formula set out in legislation. This determines not only who is responsible for administering your estate, but those who are entitled to benefit from your estate, and in what proportions.

A Will is also essential for enabling you to decide who you wish to be responsible for administering your estate (known as your “executor”), and the people you wish to receive assets which you own personally in your own name (known as your “beneficiaries”).

What else should I consider as part of my estate planning process?

Effective estate planning goes beyond making a Will and leaving it in a safe place.

If, for any reason, you can no longer manage your affairs, someone else might need to make decisions for you.

Do I need to update my estate plan?

Once you have an estate plan in place, it is important to review it regularly and to consider updating your Will when your personal or financial circumstances change.

Dear Nurses, There are three ways you can plan ahead and choose the person or persons who will make decisions for you: 1. Enduring Power of Attorney (EPA) An EPA allows you to appoint a trusted person to make financial decisions on your behalf (known as your “attorney”).

You can decide whether your attorney can begin helping you immediately, or only if you ever lose capacity to make decisions yourself.

2. Enduring Power of Guardianship (EPG) An EPG allows you to appoint the person who you wish to make personal, lifestyle and medical treatment decisions on your behalf, only if you lose capacity (known as your “enduring guardian”).

Your enduring guardian can make decisions about where you live and the support services and medical treatment you receive.

3. Advance Health Directive (AHD) Commonly referred to as a “living will”, an AHD is a legal document that sets out your instructions about what medical treatment and care you want (or don’t want) in the future. It is only used if you cannot make decisions for yourself.

On 4 August 2022, the WA Department of Health launched a new and user-friendly AHD which is far more comprehensive than its predecessor and allows you to record your values and preferences. https://ww2.health.

wa.gov.au/Articles/A_E/Advance-Health-Directives

An AHD must be followed by health professionals and is therefore a powerful and important way to ensure your wishes about your future medical treatment are followed.

Cullen Macleod provides a full range of Will and estate planning services. Our team offers a comprehensive range of skills and experience to delivery pragmatic results in a timely and cost effective way. For more information, please contact us on (08) 9389 3999.

2021 PWA2022 Newsletter I 13 PWA Newsletter I 14

I am a fifty-five-year-old male who has been diagnosed with Parkinson’s for about four years. I have had a few visits from my Parkinson’s nurse over the years and although she is very easy to talk to, I am a little concerned that she focuses on my bowel regularity a lot. I have never felt comfortable asking why this is so I thought an anonymous query might be an easy way to find out why nurses always ask these questions.

Yours, “Ian of Innaloo”

Dear Ian, We nurses did smile when we read your letter as it was a good reminder that not everyone fixates on whether they have their bowels open daily or at least second daily.

The brief question’ Yes or No’ is something we are taught very early in our nursing training - such is the importance of regular bowel actions. In Parkinson’s, regular bowel actions are important for several reasons.

Did you know that levodopa (Madopar, Sinemet, Stalevo and Duodopa) get absorbed not from your stomach but from your duodenum- much lower down? If the bowel is full of faeces, then it will make absorption of these medications much more difficult and that can result in a worsening of Parkinson’s symptoms because the medications are not working properly.

A blocked bowel or bowel obstruction is a medical emergency at any time and people with Parkinson’s are at higher risk due to the general slowing of the peristalsis or muscular waves of the bowel. This can lead to severe constipation or worst-case scenario a bowel obstruction, which can be fatal. Therefore, you can see why your nurse may seem to be focused on asking about your bowels.

You may have noticed that the nurse may also seem to have a compulsion to talk about water/ fluid intake. This is also related to bowels. By taking a full glass of water with your levodopa medications you are washing it down through the upper gastric tract, including the slower emptying stomach, to get the medications into the duodenum to hasten absorption.

In addition, the brain is a very thirsty organ and if you become dehydrated, especially coming into Summer, you may not function as well or think as clearly. It is best to make sure you drink sufficient every day; eight glasses is recommended for a host of reasons.

On rereading this we agree that nurses can appear to have favourite topics and interests, but a commonly shared favourite is bowels!

Your Parkinson’s Nurse Specialists 2022 PWA Newsletter I 7

Assistive Technology for Spring: Indigo Solutions

Coping with advancing Parkinson’s

Top 10 AT Solutions to make the most of Spring

Every person’s Parkinson’s 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 specialist provides some tips and advice on how to cope with the later stages of the condition.

The sun is out, and our long, wet winter is over! The spring season can create a sudden need to ‘Spring Clean’, our homes, bodies, minds, pets, and leisure pursuits.

While it’s great to dust off the cobwebs and clear out the clutter, sometimes we need a little extra assistance to get all the ‘To-Do’ list jobs done.

Here are our Occupational Therapists’ top ten simple AT (Assistive Technology) devices and equipment to help you this spring:

1. Long Handle Sponge: This simple device allows for safer bathing, reaching those places that reduced mobility may make difficult.

2. 2WP BroomaRake: The rake shaped bristles, which mold to the surface being swept, gives this nifty broom the ability to collect everything in its path and reach those tricky nooks and crannies.

3. Active Hands Gripping Aid: This aid goes on your hand to assist with gripping objects.

With two models and a range of sizes available, cutting the brie on the evening cheeseboard will be a breeze.

4. Easi-grip Chiropodist Scissors: With a longlooped handle that allows for the whole hand to be used for more control, your toes will be sandal ready in no time.

5. Relaxation, Imagery and Inner Healing Scripts: These exercises have been gathered from physicians, psychologists, therapists, and educators - leaders in the field of guided imagery, who know that in-depth relaxation and visualisation can heal the body, mind, and spirit.

6. Walkers: The warm weather is the perfect enticement to venture out. With the assistance of an allied health professional, you can choose a walker that is right for you, and gets you out and about in safety.

021 PWA Newsletter I 12

7. Bed Comforter: Filled with hollow core silicone fibre, the bed comforter is designed so it can rest between your legs, or as a wholebody pillow. It comes in adult, teen, and child sizing.

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

8. Anti-Spill Mug: Durable, with two lids (for anti-spill and with drinking spout), the mug is dishwasher and microwave safe (not the lids); and perfect for a cold beverage in the garden on a spring day.

9. AquaSense Bathmat: A contoured and textured slip resistant mat, made of antimicrobial rubber (to prevent mildew and bacteria forming on the surface), because spring can mean more physical movement, which can mean more getting in and out of the shower.

10. Footrests: For the home office or the study desk, there are a range of fixed and adjustable footrests with ergonomic design to meet everyone’s needs. Now you can type up your spring ‘To-Do’ lists or study with greater support.

Ask NED Indigo’s National Equipment Database (NED - askned.com.au), is Australia’s most comprehensive database for all types of different equipment. With thousands of assistive technology items and suppliers, NED can help you to make informed choices for your individual circumstances and goals.

Indigo Indigo assists you to maintain or improve your independence, safety and wellbeing in your home and out in the community; our experienced allied health professionals will partner with you to select, trial and source the AT that’s right for you. Contact our friendly team on: 08 9381 0600, visit our website www.indigosolutions.org.au or email help@indigosolutions.org.au 2022 PWA Newsletter I 8

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?

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 so gradually that people adapt and don’t seek support for them. Pay attention to your walking speed and freezing. These can be signs that your oral medication might not be working as well as it used to.

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. If you are having an unpredictable response2021 to PWA Newsletter I 10 Dr Richard White received an honorarium for his your medication or needing it more often, it involvement in this article. may mean your Parkinson’s is progressing and you may need to speak with your doctor about AbbVie Pty Ltd. 241 O’Riordan Street, Mascot NSW 2020.

AU-NEUP-220045, August 2022 the next stage of treatment options.

2022 PWA Newsletter I 13

Nurses in the Community

Nurses celebrate 24 years!

Did you know that on November 23, we are celebrating the 24th anniversary of the Parkinson’s Nurse Specialist service, honouring 24 years of care, compassion and commitment to the Parkinson’s WA community.

We take you into the Parkinson’s community, where we get to know more about the Nurses and what they do.

From the South West with Barry At the Collie Support

Group on Tuesdays, Barry Jack who has been the support group leader for many years treated us to a good old fashion sing along to keep those vocal cords strong.

Let’s talk about sleep with Fiona Our

Over the month of November, we will be giving you the opportunity to ‘get to know’ our Nurses more and tell their stories. Watch this space and follow us on Facebook to stay connected to the work we do.

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fabulous Parkinson’s Nurse Specialist Fiona and new Communications Coordinator Jacqui, visited the Kingsley Parkinson’s WA Support Group to chat to some of the members. Fiona delivered a presentation about ‘sleep’ and spent some time talking to the community. We got to know the members more as they had their afternoon tea and chat. Long-time member Jean said it was all about the community and she loved coming to the support group. “We can talk about the things that worry us - things we can’t talk about with other people who don’t understand Parkinson’s,” she said. “Nobody’s symptoms are the same, so we can be open and feel understood.”

Parkinson’s Update Seminar comes to Bunbury We were delighted to

host Dr Ramesh, Geriatrician at the recent Parkinson’s Update Seminar in Bunbury. Over 50 people attended with some great discussion topics. Parkinson’s Nurse Specialists Donna and Liz presented on the PNS role and the role of Allied Health, particularly in the regions.

It was also a great opportunity to catch up with the community and chat over a cuppa. Several home visits were arranged for current and new clients. Feedback was great, though no formal feedback was requested on the day. Thank you Bunbury and Dr Ramesh for a fantastic turnout and response!

A timely reminder about these useful services

Chung Wah presentations with Janet Our

Sometimes we forget some of the options that the Nurses discuss on their visits, as there is so much to take in!

Clinical Nurse Manager Janet McLeod recently delivered presentations over two days at the Chung Wah Community Care Association respite centres in Balcatta and Willeton.

Did you know: If you attend any WA Health clinics for

appointments, you can check your next appointment on the ManageMyCare app. This is a great way to remember all your appointments with both Doctors and Allied Health Professionals.

Don’t Forget: If you are registered with CAPS (Continence Aids Payment Scheme) and you pay

We saw 80 community members engaging in the hour long presentations which were translated into Chinese and Vietnamese.

Water Rates on your property, you may be eligible for a rebate on your bills. This is known as Medical Assist Allowance and was introduced in 2020.

Originally scheduled for 2019, Covid-19 had pressed pause on many engagement activities such as this.

For more information on CAPS, contact the National Continence Helpline on: 1800 33 00 66.

Janet said it was great to be welcomed as a part of the Chinese and Vietnamese communities and it felt good that Covid no longer stood in their way.

To apply online for the WA Medical Assist program, visit: www.watercorporation.com.au/medicalassist 2022 PWA Newsletter I 12

2022 PWA Newsletter I 9

President’s Review

2021-2022

John McDonald, Parkinson’s WA Board President

Research, funded by Parkinson’s WA Zrinski Research Fund and being carried out at Curtin University, Park C and Perron Institute has been further disrupted by Covid constraints and is now expected to recommence in 2023. The educational seminar series however has continued throughout the year with the Newly Diagnosed seminars, in particular, being strongly supported.

The year 2021-2022 continued to feel the impact of Covid-19 both in Australia and the rest of the world affecting the health and economic welfare of all.

Western Australia continued, fortunately to be spared a large extent of the shut downs and challenges seen in the eastern states.

Our important Parkinson’s Nurse Specialist Service (PNS) has been able to gradually return to more normal levels of operation, but the current staffing levels aren’t able to cope with the increasing demand for the service.

Experience gained with telehealth during the pandemic has led to some productivity gains without unduly impacting on the support the PNS’s provide.

Parkinson’s Australia (PA), of which we are a member, is stepping up its advocacy with the Federal Government to ensure the Parkinson’s community has a ‘seat at the table’ with new government discussions around the new ‘Support at Home Program’ and NDIS future developments. PA is also linking with the Neurological Alliance Australia for a louder voice in the Federal arena. The state member CEO’s collective is to be commended on their contributions to identify how the organisation can be more effective. Currently our CEO, Brenda Matthews, is Chairing this group.

In the absence of any additional government funding we have again used some of our reserves to supplement Department of Health funding for the PNS in both the greater metro area and the South West.

Despite the Department of Health having undertaken a number of policy reviews in recent years including the Neurological Sector funding review no clear picture has yet emerged on how any future funding models will effect us.

Among other objectives these reviews are ostensibly aimed at identifying the best practice for providing increased community support. We are closely watching the process to ensure the benefits of the PNS are recognised and we can secure future funding.

Pictured: PNS Fiona at a support group Covid-19 has created general financial uncertainty for people and this has impacted adversely on fundraising for all the not for profit sector. Despite this, our 2022 Pre-Tax Appeal and the Year End appeal were the most successful yet. The annual ‘A Walk in the Park’, a great community awareness raising event, made a strong return after being disrupted by Covid restrictions last year.

An unexpected bequest and better third party fundraising helped lift total income to above budget by about $250,000, which with tight control over expenses resulted in a small operating loss of $88,000 for the year which was approximately $190,000 better than budgeted. The McCusker Charitable Foundation has agreed to fund the part-time Counsellor program for a further eighteen months.

2022 PWA Newsletter I 10

There are many people who contribute to Parkinson’s WA’s activities, support group leaders, administration volunteers and those involved in direct and indirect third party fund raising, and we are grateful for their support.

The 2022 Volunteer Awards are identified elsewhere in this newsletter. Expert advice and support is also provided by our Professional Advisory Panel and pro bono Lawyers Minter Ellison which is appreciated and we thank them.

My thanks again to my Board colleagues for their contributions and counsel and to our dedicated staff for their efforts during another challenging year.

Pictured: Top right - AWITP ‘Walking for Bibs’, Inset - Walkers begin the day, Right - PWA CEO and community members with Member for Nedlands Dr Katrina Stratton, and Mayor of Cambridge Keri Shannon

2022 PWA Newsletter I 11