Connections | Issue 1 2018

pqicomms

PARKINSON’S QUEENSLAND INC | INFORMATION | SUPPORT | AWARENESS | EDUCATION | ADVOCACY | RESEARCH

A U T U M N | 2 0 1 8

Townsville Newly

Diagnosed Forum

Dealing with

Dysphagia

Support Group

Round Up

Conquering Cambodia

Pushing Their Limits for People with Parkinson’s


Parkinson’s Queensland Inc.

Address:

Unit 2/25 Watland Street

Springwood QLD 4127

Postal: PO Box 1684

Springwood QLD 4127

Phone: 1800 644 189 Free Call

(07) 3209 1588

Fax: (07) 3209 1566

Email:

pqi@parkinsons-qld.org.au

Web:

www.parkinsons-qld.org.au

Social Media: @ParkinsonsQLD

ABN: 69 838 771 233

Office Hours:

Editor &

Advertising:

Monday - Friday

9:00am - 5:00pm

ISSN: 2206 - 4419

communications@parkinsons-qld.org.au

Management Committee

President:

Vice President:

Secretary:

Treasurer:

Members:

Staff

Chief Executive Officer

Mark Hindle

Business Services Officer

Brikena Mema

Members Services Officer

Rachel Jeffrey

Prof. George D. Mellick PhD

Ms Karen O’Maley RN

Ms Paulette Montaigne

Mr Daniel Sullivan

Mr Peter ‘PJ’ Byrne

Ms Ruth Coleman

Prof. Peter Silburn AM

Dr Lesley van Schoubroeck

Events & Communications Officer

Cally Zammit

Administration

Fiona Webb

Magazine Contributions

Submit your articles or photographs for selection for

publication in the CONNECTIONS magazine. We’d

like to hear your stories on living with Parkinson’s,

in particular experiences from which others could

benefit.

Please submit articles in “Word” document and

images in “JPEG” format.

The deadline for the next issue of ‘Connections’ is

the 13th August 2018.

Email:

Post:

communications@parkinsons-qld.org.au

Connections

Parkinson’s Queensland Inc.

PO Box 1684,

Springwood QLD 4127

Connections is also published on our website.

http://parkinsons-qld.org.au/about-pqi/connections-magazine/

Need Support?

You are encouraged to use the free, confidential

telephone information and support services

provided.

The Information Line aims to provide information

and support to assist people to understand and

live well with Parkinson’s, but it does not provide

medical advice.

This service is intended for people with Parkinson’s

or other movement disorders, their families, carers

and friends, teachers, students and healthcare

professionals.

If we do not know the answer to a specific enquiry,

we will be able to point you in the right direction.

1800 644 189 (toll free)

Cover Image: A group snapshot of the incredible Cambodian Odyssey

team as they ride across Cambodia to raise funds and awareness for PQI.

Disclaimer: Parkinson’s Queensland Inc. has endeavoured to ensure that

the information in this magazine is accurate, however, we accept no

responsibility for any errors, omissions or inaccuracies in respect of the

information contained in the material provided by Parkinson’s Queensland,

nor do we endorse any of the information or practices contained. This

material is for information purposes only but does not replace any proper

medical advice and or opinions. We recommend at any time that a

person who may be suffering from such a condition immediately seek

qualified medical advice. Further, Parkinson’s Queensland Inc. accepts no

responsibility for persons who may rely upon this Information for whatever

purposes (we refer you to the immediately preceding statement).

Privacy Policy: You can view our privacy policy online:

2

Parkinson’s Queensland Inc.


What’s Inside?

4

President’s Letter

13

Meet Rachel

17

Australian of the Year visits

DBS Support Group

14

Engaging with

Charis Mullen MP

06

Conquering Cambodia

08

Newly Diagnosed Forum

18

10

‘I’m 44! Are you sure it’s PD?’

16

Parkinson’s Queensland

at the Australian

Pharmacy Professionals

Conference

16

15

Getting to know Demetri

Sing to Beat Trial Concludes

17

Exercise Program for Tolga

Support Group

18

Highlight on Dysphagia

20

20

Support Group Update

22

Trial Fitness Program

for Noosa-Tewatin

Support Group

26

Donations with

Thanks

connections Autumn 2018 edition 3


PQI UPDATES

President’s Letter

Welcome to the Autumn issue of ‘Connections’.So

far this year, the team at Parkinson’s Queensland

has been focused on building the levels of

awareness of Parkinson’s across our State.

A great deal of effort has been placed upon government

impact and visitation with representatives at all tiers; Local,

State and Federal. Our federal efforts have been focused

upon promoting the national action framework driven by

Parkinson’s Australia.

While there is still a lot to do, I am pleased to let you know

that Parkinson’s Queensland has secured a two-year

extension to our recently completed Federal Government

Grant. Our focus has now shifted to building new

relationships at a State level as we work to secure funding

through new Queensland-Government schemes that will

replace our current State-based grant that expires in mid-

2019. Should we be successful, we will be in a position to

enhance our education programs and service delivery efforts

considerably and relieve a potential shortfall of $350,000

from Parkinson’s Queensland’s operational budget over the

coming two years.

It has been a source of pride to see our Management

Committee and our Office Team working so closely on many

of our projects. Collaboration and communication with

Support Groups and our members have been the keys to our

success to date. Also, a strong collaborative and collegiate

association with other States is in place as we work together

which is bring additional support across borders.

After much consideration, we have decided to move the date

for ‘A Walk in The Park’. For many years there has been

ongoing discussion among the members of the national

Parkinson’s community and their State CEO’s around the

realignment of the date for A Walk in The Park so that it

is more closely aligned with World Parkinson’s Day on

11 April annually. A change in date will provide us with

greater opportunity for collaboration with other states and

international agencies while also utilising the power of World

Parkinson’s Day and the resources it provides. Importantly,

it also offers us the chance to create greater awareness and

highlight Parkinson’s disease generally. Taking into account

Easter, school holidays, the impact of ANZAC Day, and

knowing we’ll never be able to meet all needs, we have

chosen the weekend closest to 11th April for our next walk,

which will now be held on Saturday, 13 April 2019.

Membership of Parkinson’s Queensland is an important

way in which to help us grow our influence and impact

in the service of all people affected by Parkinson’s. In

coming weeks, you will receive an invitation to renew your

membership which is an invitation I heartily endorse. By

doing so you will make a big difference!

As signalled previously, our intention

is to increase the frequency and diversity of our educational

offerings. Since October we have provided a program

in Cairns where we hosted an international research

conference. We also held a symposium for allied health

professionals and support group members in Townsville. In

addition, we’ve enhanced our support of programs offered

through Support Groups.

The recent ‘Newly Diagnosed Forum’ held in Townsville

was an outstanding success involving members, carers,

a support group coordinator, allied health professionals,

nurses, a neurologist and people with Parkinson’s. The

Forum saw attendance rates that were well above our

expectations with delegates from as far away as Victoria,

Sydney, Western and Far North Queensland proving that a

well-designed and delivered program will draw the audience

(had it not been for the floods attendance would have been

significantly higher). It is the aim of PQI to further develop

these types of programs with engagement from research,

medicine and allied health professionals.

The Pharmacy Guild national conference held on the Gold

Coast enabled our team of staff, volunteers and Board

members to interact with one of the most important

groups of professionals to people living with Parkinson’s -

Pharmacists. These types of events wouldn’t be possible

without the assistance of our volunteers, so a huge thank

you goes to the volunteers we attracted from Griffith

University and the University of Queensland for this event.

Support Groups continue to be an important foundation

from which Parkinson’s Queensland can realise its vision.

Over coming months, we hope to be able to bring you some

enhancements to our offerings that will help us to grow even

further.

Enjoy the magazine and I encourage you to renew your

membership in 2018-19.

Best wishes.

Professor George D Mellick

President.

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Parkinson’s Queensland Inc.


PQI UPDATES

A Note from the CEO

Date shift to Align ‘A Walk in The Park’ in April 2019.

Each year our members ask us ‘why is a Walk in the Park in September / October? When World Parkinson’s Day is in

April.’

For many years there has been ongoing discussion among the members of Parkinson’s Australia (PA), the PA Board and the

CEO’s Group around the coordination of the date for ‘A Walk in The Park’. Issues holding back progress have been the

inability for some states who have contractual arrangements in place and clashes of our event with others; e.g. Bridge to

Brisbane, etc.

There is now growing energy among the states to move ‘A Walk in the Park’ event to April so that it aligns with World

Parkinson’s Day annually. By making what, on the face of it is a logical move which is perhaps a little overdue; it does offer

the opportunity to collaborate with other states and international agencies with World Parkinson’s Day collateral and media.

Taking into account the decision of some states not to have their walk in 2018, the moveable nature of Easter, school holidays

and the impact of ANZAC Day; our aim will be to align our event to the closest weekend to 11th April, Saturday, 13 April

2019.

Negotiations with various venues, contractors and others are being finalised to move away from September 2018. We will

keep members informed.

In the meantime, we ask that you place a ‘save the date’ for Saturday, 13 April 2019.

It’s time.

Mark Hindle

Chief Executive Officer

connections Autumn 2018 edition 5


EVENTS

Conquering Cambodia

In November 2017, a team of people committed themselves to join Parkinson’s Queensland and cycle

across Cambodia with the aim to raise funds to support people affected by Parkinson’s and to increase

awareness of Parkinson’s in the community. This was a first time initiative for the organisation and for

all the participants to take part in an overseas charity challenge.

Leg One

Siem Reap: Angkor Thom and Angkor Wat

Cycling distance: 35km

On the first day of cycling the team were met by our Guide, Yann,

who gave us a briefing and safety demonstration, after which we boarded

the bus to commence our Cambodian Odyssey - It was exciting start

to arrive and find eleven bicycles neatly lined with our names.

Breaking up the cycling into 6-15 kilometre trips we cycled into Angkor

Wat National Park - ‘City of Temples’. Our Team explored three of the

temples, listening to traditional Cambodian stories and learning how

these incredible buildings were constructed.

Leg Two

Siem Reap: Banteay Srey, Landmine Museum &

Banteay Samre

Cycling distance: 80km

With no prior experience 10 incredible

individuals put up their hand for the

adventure of a lifetime.

Team PQI collectively cycled over 3,000

kilometres and joined forces to raise

over $55,000.

If you’re interested in being part of our next

Inspired adventure, email the team -

events@parkinsons-qld.org.au

for updates & information

Today marked our last day on the bike.

As saddening as this was, it was welcome relief for our aching bodies.

Leaving our hotel in Battambang the team faced the bustling traffic of cars,

scooters and tuk-tuks passing in every direction. After 22 kilometres we arrived

at the lowers of Banan Temple. After climbing 350 long, steep, slippery

and uneven steps we arrived at Banan Temple, enjoying the

temple and sights from above. With tired and shaky legs, our team grabbed

on to each and helped each other back down the steps to

complete the final 23 kilometres.

Our team cycled further away from the

villages through lots of low lying water; taking

in the open farm country and locals tending

their crops. At one point our

support truck was unable to pass through

one particularly muddy area. The team turned Leg Six

around and went back to help, Siem Reap – Batt

adding weight to the back of the truck so it could Cycling Distance

get enough traction.

Leg 7

Battambang – Phnom Penh

Cycling distance: 45km

6

Parkinson’s Queensland Inc.


EVENTS

The team’s nerves were

running high with anticipation for the

longest cycling day.

Our 80 kilometre cycling day included

passing through stunning villages, along

red sand filled roads and

dodging cows on the road.

Leg Four

Siem Reap: Roluos Temple & Kampong Phluk

Cycling distance: 50km

It was an eventful day with two temple

visits in Banteay Srey, the first flat tyre

and listening to traditional music performed

by victims of land mines. The

team also visited the Cambodian Land

Mine Museum.

It was a gruelling day as our team

pushed temperatures reaching 32 degrees

with 92% humidity.

Our team woke in the morning to pelting rain, thunder and lightning - an extreme

contrast to the day before! Yann predicted that it would be a half hour wait before we

could set off and amazingly he was correct!

The team enjoyed encouragment from the local children waving and cheering the team on

as we pushed through 50 kilometres of mud and puddles.

In the afternoon our team visited Tonle Sap Lake, a floating village where the buildings sit

on stilts. It is an incredible sight, knowing that during wet season these same buildings

are perched many metres above the water line. It was an incredible experience as the

team was transferred to small row boats and were rowed amongst the trees with the tree

canopy towering above us.

A Cambodian Odyssey

More than 300km for people affected by

Parkinson’s

The team faced long stretches of

road that seems endless with strong

head winds and

unavoidable puddles of water making

this the hardest cycling day yet.

At the completion of our ride, we visited

Beng Mealea, another temple, now

intertwined with the jungle

environment in which it lies.

Leg Five

Siem Reap: Chao Srey Vibol & Beng Mealea

Cycling distance: 60km

ambang

: 56km

We spent the first half of the

day as students at a Cambodian

cooking class!

Our chef teacher first took us to the

markets, where we got a firsthand

insight into the hustle and bustle of

where the fresh food comes from,

that we would later be cooking.

Leg Five

Siem Reap: Half day cooking

To read more about our Cambodian Odyssey

We learnt to make fresh spring rolls,

and the national dish of

Cambodia, fish amok, before

finishing with fried banana.

https://inspiredadventures.com.au/events/

parkinsonsqld-cambodia-2017/

connections Autumn 2018 edition 7


PQI UPDATES

Townsville Newly Diagnosed Forum

It’s a daunting time when you’re newly diagnosed with Parkinson’s Disease (PD) and it was with this in

mind that the Townsville Parkinsons Support Group (led by Support Group Coordinator Ruth Coleman)

hosted a ‘Newly Diagnosed Forum’ in Townsville to bring together those in the region that wanted to

learn more about their condition and to find support from the local networks of champions who live with

Parkinson’s every day.

The Forum called on the experience and qualifications of some of Australia’s Parkinson’s leaders to deliver the most

up to date information, research and advice for those that are newly diagnosed, their family, carers, friends and health

professionals.

The Forum saw more than 100 people come together to share their experiences with PD and the Newly Diagnosed Forum

was fortunate enough to host speakers with varied experience from health professionals through to carers and people living

with Parkinson’s Disease.

Speakers included Karen O’Maley RN, Neurosciences Queensland; Paul Parker, Sports Med NQ; Ann Finnimore, Speech

Pathologist at the Prince Charles Hospital; Jenny Potter, Carer; Ruth Coleman, Parkinson’s Queensland Board Member,

Support Group Coordinator and a person with Parkinson’s; Dr Richard White, Townville Hospital & Townsville Neurosciences

Clinic and Rachael White RN, Townville Neurosciences Clinic.

Carer, Jenny Potter

Rachael White, George Mellick

and Ruth Coleman

Mathew Richards (UCB) with

Karen O’Maley

Ruth Coleman, Regional Support Group Coordinator sums the forum up beautifully -

“People are hungry for information, especially when they’re newly diagnosed and it is vital to give people a place to come

together and connect. It’s important to remember that not everyone has the internet or is

technologically savvy, beyond that when you’re newly diagnosed you may not even have the capacity to

comprehend what the words on the page mean to you or for you, so to seek all of that information at once

is invaluable.

I am so proud of all of the speakers because everyone did such a great job, we even made sure that we incorporated

movement to make sure that people with Parkinsons were able to stretch their legs and move to break up such a long

day - we encouraged everyone get involved in the exercises, hopefully it highlighted for all of the attendees what such a

long day means to someone with Parkinsons.

It was nice just to be able to share the tricks I’ve learnt along the way that makes life easier! It made me feel like I could

give something back, in a similar way that people have to me over the years. “

8

Parkinson’s Queensland Inc.


PQI UPDATES

At Parkinson’s Queensland, it is our aim to work closely with all people connected with Parkinson’s Disease - this includes

GP’s, Allied Health Practitioners, all levels of government, people living with Parkinson’s and the people who care for them.

By doing so, we broaden our knowledge of this condition which assists us to raise awareness for the condition and dispel the

belief that Parkinson’s is an ‘old persons disease’.

It is this advanced knowledge and greater connection with the Parkinson’s community that enables us to compel government

representatives to enhance support and advocacy throughout the sector.

It is abundantly clear there is a lack of understanding amongst those offering health services about the real issues suffered by

people living with PD, especially their Carers.

By offering these forums, the gap in services is closing and it is through engagement we will be able to further enhance the

projects of Parkinson’s QLD to the greater Parkinson’s Community.

In the months ahead, we will be providing more programs like this throughout QLD and we look forward to continuing to work

with those living with PD.

Mark Hindle

Chief Executive Officer

2nd March

2018

2nd Over MARCH 100

Attendees

2018

2nd 26 MARCH Health

Professionals

2018

2nd Townsville MARCH

RSL

2018

connections Autumn 2018 edition 9


At 44 Ronald Jansen was surprised by his diagnosis with Parkinson’s Disease, in this issue of

Connections, he recounts the tale and how it has impacted his life.

At 44, I was a happily married man with 3 young children

and a good job.

MY STORY

I’m 44! Are You Sure It’s PD?

But an unwelcome intruder came into our lives - a progressively worsening

tremor in my left hand. After two years of ignoring it, the tremor had gotten

to the point that I felt I needed to see our Doctor.

Any one of a vast menu of diseases could have caused the tremor and my

wife and I were getting more and more concerned as we read about the

possible causes prior to the appointment.

When I was asked to get an MRI scan, we really became worried.

My first appointment with a Neurologist is one that is etched in my mind.

After a few simple tests, he asked me to sit down and it was just after 5.30pm on 8 March, 2004, that the he informed

me that I had early-onset PD. It felt like a hammer had hit my chest. Shocked, I barely recall what else he said.

I drove home and tearfully told my wife. We both barely slept that night.

We told the children at dinner the next day, my son who was eight years old dubbed it “the dinner from hell” and I

couldn’t have agreed more. It broke my heart to see the hurt I felt I had inflicted on my whole family. It still does.

A big black cloud had descended over me and over our previously happy family.

Acceptance of my diagnosis was hard. I did not ask to be “PD-man” and at the time I really had no idea what the

diagnosis would actually mean for us. I avoided telling most people at first, partly because I was

embarrassed and partly because I did not know what I would say to them.

I skulked around for a week or two after diagnosis. I think I had read and re-read everything available about PD at least

three times! It focussed mostly on older people, loss of mobility, balance, rigidity and tremors, medication, side effects,

deep brain stimulation, that it was progressive, could cause dementia, and that there was no cure! Great stuff for an

ignorant, newly diagnosed early-onset PDer.

I became more and more sullen until my wife saved me from my gloomy self.

She gave me some articles that focussed more on what PD meant for those who were diagnosed at a younger age.

They collectively highlighted that many early-onset PDers continued to work and live with their families for many years

after being diagnosed. She also arranged a chat with the son of a 70 year man who had lived with the disease for 40

years. Apparently, he was still riding a scooter in his European home town.

We also attended a few “Parkinson’s At Work” meetings. That gave us a little more hope as we met people who were

diagnosed young but who had continued on with employment for many years, one for 17 years post diagnosis.

What was interesting to me was that it was hard tell which of the group’s participants had PD and which ones did not.

They were all relatively normal! That really was good to see for someone, ie me, who was ignorant of PD and uncertain

as to whether they had symptoms that made others stare, stay away or pass some sort of disparaging comment.

A decade and a half has passed since that time. I have survived the symptoms and stares! I am 58, my kids are now

adults with university degrees and we have our first grandchild!

The symptoms of PD are without a doubt a pain in the butt. They frustrated me to no end. It is not easy to live with and

nor am I when the grumpy old man within me breaks out. But I now know that life goes on post a PD diagnosis. I didn’t

suddenly age thirty

or so years, get dementia overnight or lose my ability to walk, talk or work the day after diagnosis. Apart from the shock,

nothing much changed the day of my diagnosis, the week and months after. Life kept keeping on.

10

Parkinson’s Queensland Inc.


MY STORY

Medicine helped a lot for three years thereafter, initially making a difference but then wearing off in terms of its effectiveness.

I am now using a Duodopa Pump but that is another story for some other time.

My symptoms have been progressively worsening. But all those years after I first noticed the tremor in my left hand, I can

proudly say I kept working for nine years and went camping every year with my family. My wife and I have been overseas

a few times and had our first helicopter ride a few years ago. I walked my eldest daughter down the aisle!

I now still walk the dog in the morning, ride my bike (averaging around 80-100km per week), sketch, travel, watch sport,

do household and gardening chores and basically participate in family outings whenever I can.

None of this would have been possible without the loving care and help from my wife, Paula! Her assistance as carer,

friend, helper, doctor, chauffeur, massage therapist, job-finisher-offerer, and in so many other ways is priceless and has

allowed me to remain “independent”.

Overall, I guess my life is a lot better that I expected it to be when I was first diagnosed. I wish I would have known that

this would be the case at the time. I encourage the newly diagnosed to not just read about symptoms and treatments,

but to also talk to people that have been living with Parkinson’s for years and continuing on with their daily lives.

Support for the Newly Diagnosed

It can be a daunting time when you’re newly diagnosed with

Parkinson’s Disease but the team at Parkinsons QLD are here to

help find your way on that journey.

The Member Services team can provide a ‘Newly Diagnosed Pack’ that

contains comprehensive information about local support groups, government

assistance and information for carers, family members & friends.

Give Rachel, Fiona and the team a call on 1800 644 189

to find out more because we’re all in this together.

connections Autumn 2018 edition 11


RESEARCH

Volunteers needed for research

A physiotherapy exercise program with a

self-management approach to improve

physical activity in people with

mild-moderate Parkinson’s disease.

It is important to maintain physical activity in people with

Parkinson’s disease. Physical activity not only contributes

to preserving functions such as gait, balance in standing,

and muscle strength, but also ensuring efficient

performance of activities of daily living and maintenance

of independence.

International guidelines recommend that even people

with neurological diseases should perform 150 minutes

of moderate intensity activity each week. Physical

activity is however on average 1/3 lower in people with

Parkinson’s Disease at the time of diagnosis than people

of the same age, without Parkinson’s Disease.

To find out more, or to volunteer for this research

please contact Robyn Lamont

Email: r.lamont@uq.edu.au

Phone: 07 3365 2779

Researchers at the University of Queensland are inviting

people with mild-moderate Parkinson’s Disease to

participate in a research project aiming to improve

physical activity levels. The intervention involves group

exercise sessions run by a physiotherapist and advice

to help monitor and continue physical activity including

using commercially available activity monitors.

Stay On-Time!

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helping to keep people on time

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visit: www.TabTimer.com.au or call: 1300 TAB TIMER (1300 822 846)

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12

Parkinson’s Queensland Inc.


PQI UPDATES

Meet Rachel

April marked an important milestone for Rachel Jeffrey

as she reaches two years of working for Parkinson’s

Queensland.

Rachel initially served as a volunteer in 2015. When

starting as a volunteer she didn’t have a personal

linkage to Parkinson’s, however she applied her

knowledge from previous volunteering roles focusing on

the welfare of others. This led to an interest in working

with community service organisations and disability

service providers. Shortly after sharing experiences of

her time volunteering in the office with friends and family

several people opened up about their own linkages

to Parkinson’s and how it had affected them. These

experiences enabled her to gain insight to the needs of

people living with and impacted by Parkinson’s. This

inspires her to learn more every day and be involved

with the Parkinson’s community.

After joining Parkinson’s Queensland staff as the Project

Administrator in April 2016 she transitioned into the role of

the Member Services Officer in January 2017 where she

is heavily involved with our Members, Support Groups,

government departments, health professionals and people

impacted by Parkinson’s.

Rachel has achieved some amazing things during her time

with Parkinson’s Queensland and is a dedicated member of

the PQI team. In addition to conquering Cambodia, Rachel

has been really proud of watching a growth in membership

and loves seeing new support groups find their feet knowing

that more people with Parkinson’s will find some of the extra

support they need.

Rachel pictured here with Tom Dawson (Caboolture

Support Group Coordinator)

“My Mission in life is not merely to survive, but to thrive;

and to do so with some passion, some compassion,

some humor, and some style.” – Maya Angelou

If a quote could wrap up who I am and how I feel,

this would be the one. I have always believed that my

passion and compassionate nature are the strongest

traits I have. This has been epitomised in my role at

Parkinson’s Queensland and since my involvement I am

constantly inspired by my encounters with all people

affected by Parkinson’s. I find that my experiences with

each person so far have helped me to apply my services

to members in a meaningful way.

It was also the motivating factor for me to jump on bike

(something I haven’t done since my age was a single

digit!) and cycle across Cambodia with a great group

to raise funds and increase awareness of the need for

support. Friends, family and even those I haven’t been

associated with for years rallied together to help me raise

over $5,000 towards the campaign. They understand my

desire to help ensure the continued provision of services

to people affected by Parkinson’s.

Rachel riding as part of the Cambodian Odyssey

I am grateful for the opportunity to be a part of the

Parkinson’s community and thank you for a wonderful

two years.

connections Autumn 2018 edition 13


PQI UPDATES

Engagement with State MP’s Important for Growth

Parkinson’s Queensland Inc. Chief Executive Officer, Mark

Hindle, recently had the pleasure of being able to brief Ms

Charis Mullen State MP, Member for Jordan, on PQI’s activities

and plans for the year ahead.

A knowledgeable local member who has a good understanding of our

sector, she expressed particular interest in the importance of a coordinated

approach engaging our Support Groups and State members as we

advocate for better services and support.

Ms Mullen and Mr Hindle both agreed that coordinated

approaches avoid misinformation.

Ms Mullen was especially keen to know more about our recently announced

Carers’ Support Group, and how we can cooperate in partnership with

PHN’s, Hospital Districts and funders.

Parkinson’s Queensland looks forward to a continued relationship with Ms

Mullen and her team as it looks towards future growth.

Charis Mullen MP accepting her Parkinson’s Tulip pin

from PQI’s CEO, Mark Hindle

for people with Parkinsonʻs

Fully fitted sheets designed in three panels with

centre panel in satin and two end panels (head and

foot) in cotton/polyester.

This combination allows greater ease of movement

in the middle section of the bed, whilst the top and

bottom portions allow for grip whilst turning. Fully

elasticised edges help maintain its position on the

mattress. Machine washable.

To order call Rebecca on 0411 109 034,

Visit www.easywearaustralia.com.au or Email info@easywearaustralia.com.au

14 Parkinson’s Queensland Inc.

PO Box 284, Nedlands WA 6909 T: 0411 109 034

E: info@easywearaustralia.com.au W: www.easywearaustralia.com.au


MY STORY

Getting to know Demetri

Meet Demetri Patrikios the most ‘senior’ member of Young@Park Support Group

At 85 years young, Demetri Patrikios is the most ‘senior’ member

of Young@Park Support Group. He celebrated his 85th birthday at

the beginning of February 2018. Hearty congratulations, Demetri.

With his wife Effie he is a regular at meetings and one of their favourite

members. Let’s find out a bit more about Demetri by way of

an interview with Kathryn Madigan who publishes the Young@Park

Support Group newsletter.

What is your current situation and a bit about your background?

I turned 85 in February 2018 and have been retired since 2002.

My working life both in South Africa (where I was born and educated) involved 12

years in Dentistry. After graduating in Orthodontics I worked as an Orthodontist

for the next 34 years. This involved private practice and being a lecturer in

orthodontics at Pretoria university, University of the Witwatersrand and finally at

Dental School at the University of Queensland.

Pictured: Demitri with his Grandsons

My parents both came from the island of Ithaca in Greece as did my wife's parents. Effie and I have strong connections

to the island and we have visited as often as we have been able. In fact, that is where we met in 1961!

Most days I find myself..

Reading and watching DVDs from The Great Courses. These are series of lectures on many and varied subjects and they

give me great satisfaction. I became a student once again. Still love to learn.

Given what I know now, I would recommend to others:

To embrace your families and enjoy as much time with them as you can. Travel while you can and enjoy many social

outings with family and friends.

My life has changed in this way..

I was diagnosed in December 2005 and had DBS surgery in early 2011.

I have always been productive not only in my working life but I have enjoyed many hobbies and interests. Woodwork,

bookbinding and very importantly making jewellery in both silver and gold. Parkinson's has now claimed those experiences

from me and I do miss them.

When I’m having a bad day ...

I like to spend time with my wife who brings me down to earth.

What's something that people would be surprised to know about you..

I was an only child and unfortunately lost my father when I was ten years old. We never had a car but I had a bicycle

which I loved. My means of transport!

I played rugby union both at school and at university and later was a coach for our team at our social club in

Johannesburg. Soccer and tennis were in the mix as well and believe it or not I was actually a good boxer.........gave it up

as I couldn't see the sense in knocking someone out.

Last but not least I have always had a great sense of community and have served on many committees throughout the

years.

The most difficult decision I have faced was to uproot our family and move from Johannesburg to Brisbane in 1981. Best

decision ever!

We think so, too, Demetri.

connections Autumn 2018 edition 15


PQI UPDATES

Australian Pharmacy Professional Conference

& Trade Exhibition 2018

Pharmacists are often the first port of call for people to get

advice on health in general, as well as playing a major role in the

delivery of health services to Australians living with Parkinson’s.

The Australian Pharmacy Professional Conference and Trade

Exhibition (APP) is the largest pharmacy conference and trade

show in Australia.

The Parkinson’s Queensland team supported by Pharmacy Students from Griffith

University, QUT and UQ, and volunteers were excited to be a part of this year’s

Australian Pharmacy Professional Conference on the Gold Coast over the four days

from 3-6 May 2018.

We all know and trust our local ‘chemist’. Often pharmacies are the first point of

contact, especially in rural and regional areas. Pharmacists and their staff play an

important role in recognising the signs and symptoms of Parkinson’s and are usually

the most accessible health service available to People affected by Parkinson’s

because traditionally the local pharmacy is a fundamental safe haven for health

advice, comfort and service.

While this is a national conference with pharmacists and presenters attending from

across Australasia it is held on the Gold Coast for reasons we locals understand

well. Parkinson’s Queensland is pleased to represent our national peak body,

Parkinson’s Australia at this conference.

Brikena & Utah talk all things Parkinson’s

with a conference attendee

This has been further compounded by the knowledge that, sadly,

Dr Yoon Irons will not be involved in the foreseeable future.

Professor Stewart has advised Parkinson’s Queensland he

will investigate funding opportunities for an appropriate follow

on study and support staff, at which time he will approach

Parkinson’s Queensland to become involved on a co-funded

basis with other philanthropic supporters.

Parkinson’s Queensland was not approached by the University or

Professor Stewart to support the delivery of the ‘Sing to Beat’ trial

but looks forward to learning more once the project results are

published. We will keep you advised of progress once Professor

Stewart is ready to move forward.

Sing to Beat Trial Concludes

Recently we met with Professor Don Stewart from Griffith University who updated us on the success of

the ‘Sing the Beat’ pilot project undertaken in association with the Conservatorium of Music in Brisbane.

Unfortunately, there are no plans to repeat the pilot study which has now concluded due to challenges around working up a

suitable project. That will be considered once the pilot project’s results have been published hopefully within the next six to nine

months.

Broadening of the base of groups or choirs involved is also an exciting challenge for not only Professor Stewart and his team but

also for Parkinson’s Queensland as the enthusiasm of participants in the pilot was far in excess of expectations.

16 Parkinson’s Queensland Inc.


PQI UPDATES

Exercise Program for Tolga Parkinson’s Support

Exercise is an important part of healthy living for everyone, but especially so for people with

Parkinson’s disease (PD). It is widely accepted by research and medical professionals as well as

people with Parkinson’s (PwP), that it is a vital component to maintaining balance, mobility and

other activities of daily living.

With funding provided by the local Council, the Tolga

and District Parkinson’s Support Group started a

monthly exercise program under the guidance of a

qualified exercise therapist - this program is currently

funded until June when the group will have the

opportunity to reapply.

Participation is voluntary and people are encouraged

to join in if they are comfortable with the exercises.

A separate programme is also offered to those not

comfortable with the exercises which includes board

games, cards and various other activities aimed at

sharpening cognitive skills.

DBS Support Group visit by Australian of the Year

The April meeting of the Deep Brain Stimulation Support Group was particularly interesting.

DBS Support Group and nine others from around the region joined together to hear from Emeritus

Professor Alan Mackay-Sim, Australian of the Year in 2017. Professor Mackay-Sim presented on the

topic Progress in Stem Cell Research with special reference to Parkinson ’s disease.

Nearly 80 people from the ten support groups came together to hear

Professor Mackay-Sim describe the progress that has been made in the

area of Stem Cell Research, and the gap still remaining before

scientifically proven benefits can be derived from this approach for the

treatment of Parkinson’s Disease. A video recording was made of

Professor Mackay-Sim’s presentation which will be made available to

those interested who weren’t able to attend in person.

It was fantastic to see new members coming along to our meetings and

sharing experiences with us.

If you would like to be

included on the DBS

Support Group mailing list

for information on

forthcoming activities,

Contact Neil on :

P: 07 3278 5152

E: npage2@bigpond.com

connections Autumn 2018 edition 17


HEALTH

Highlight on Dysphagia

Practical advice for living with swallowing difficulties

Medications and swallowing – a tough act to swallow!

Taking medications to treat the symptoms of Parkinson’s disease can be extremely challenging for a variety of reasons.

Complicated prescription schedules involving a number of different medicines can be difficult to follow.

Additionally, side effects of these medicines see many people reluctant to continue with treatments.

Perhaps most importantly, though, are the practical obstacles that impact someone’s ability to physically take medications (e.g.

opening bottles, popping tablets from a blister pack).

Critically, though, swallowing difficulties can develop in over 80% of people with Parkinson’s, causing many to ‘trip at the final

hurdle’ when taking oral medications.

When any such challenges occur, seeking out assistance and solutions is paramount – and why not start at your local

pharmacy? Your pharmacist is a free first port-of-call for assistance and can help you start breaking down the

barriers.

If you are facing difficulty swallowing tablets, you can explore practical solutions to ensure you can still get benefit from your

medications. Important things to know:

• Medications and dosage forms vary in how they are absorbed and act in the body. Don’t go it alone! It is

critical to liaise with your pharmacist or doctor when solutions are being trialled.

• The most common method that people try to make swallowing easier is crushing tablets or opening

capsules – please do not break out the mortar and pestle without talking to your doctor or pharmacist! Many

medications are specifically formulated to release the drug at a certain point or rate in the digestive system

(e.g. Madopar HBS®). Altering medications by crushing or opening them alters their absorption in the body, and you

won’t get the benefit!

• Your pharmacist or doctor may be able to advise you of a more suitable formulation of the medication (e.g.

dissolvable tablet or liquid). A speech pathologist can also make other suggestions to aid swallowing.

• Retail products made to help in swallowing medications are also available (e.g. Gloup®) – again, chat to

your doctor or pharmacist before using these products as these are only recommended on a case by case basis.

What should I do if I think I have a swallowing problem?

Swallowing difficulties (called dysphagia) in Parkinson’s are extremely common and can be one of the earliest

symptoms. Initially, the swallowing symptoms might cause people with Parkinson’s to cough and clear their throat during

meals or when drinking. While this might seem like something that you can ‘put up with’, coughing when

eating and drinking can be a sign that food and drink is going down the wrong way.

If you notice you or your loved one has any of the following symptoms, you may have dysphagia:

• Coughing, choking or throat clearing during and after eating and drinking

• Feeling like food is getting stuck in the throat

• Noticing food still in the mouth after meals

• Avoiding certain foods because they are difficult to swallow

• Taking more than 30 minutes to finish a meal

• Weight loss without a cause

• Frequent chest infections with no known cause

If untreated, dysphagia can cause chest infections (e.g. pneumonia), malnutrition and dehydration, weight loss, discomfort

during meals and in serious cases, death. Dysphagia is a serious problem and should not be left untreated.

If you think you or someone you know has dysphagia, you should:

• Talk to your GP and ask for a referral to see a speech pathologist – there are a range of public and private options in

Queensland for people with Parkinson’s disease.

18

Parkinson’s Queensland Inc.


HEALTH

Keeping an active social life with swallowing difficulties

Team

Staying connected to your family, friends and community when living with Parkinson’s disease can be a challenge. members The Alex

research suggests that people with Parkinson’s and dysphagia may experience feelings such as:

and Angela

Arkadieff

• loss of mealtime enjoyment

complete some

cycling training

• disrupted family mealtime habits

in preparation

• feelings of stigma

for the trip.

• the need for social adjustment (e.g. strategies to enable eating out)

• guilt about the demands put on carers for meal preparation and organisation

The good news is; you are not alone! Your speech pathologist can work with you to identify solutions to any of the issues

you’re experiencing. For example, did you know you can get thickening powders that look like sugar sachets so that when

you have your coffee out and about, no one would ever know you’re thickening it?

There are also a range of dysphagia-friendly cookbooks available for meal ideas, with recipes that all of your friends and

family can enjoy without your meal looking any different. Chat to your speech pathologist about the issues you’re experiencing

with eating and drinking – you’ll be amazed at what can be done!

A list of speech pathologists can be found on the

Speech Pathology Australia website at

www.speechpathologyaustralia.org.au

You can contact a speech pathologist on this list at any time

without a GP referral

Editorial Contribution made by:

Simone Howells

Simone Howells is a lecturer in speech pathology at Griffith University and a certified practising

speech pathologist with clinical expertise and research interests in the area of adult dysphagia.

She is currently completing doctoral research investigating the experiences of people with dysphagia

and their carers living at home, under the supervision of A/Prof Petrea Cornwell, Prof Liz

Ward and A/Prof Pim Kuipers.

Bennett Robinson

Bennett Robinson is a registered pharmacist with over 10 years of experience in the community

setting.

He is currently the Managing Pharmacist at Malouf Pharmacies New Farm. Ben is passionate

about supporting his patients to live optimally, through preventative programs and medication

management.

connections Autumn 2018 edition 19


SUPPORT GROUPS

The latest from our Support Groups

BUNDABERG

The Bundaberg Support Group

has started off with a busy year.

Our first guest speaker for the

month was Jodie from Comlink.

She explained all their services and

the events they run every day of the

week. You can join Comlink and

participate in any of these events

for a small fee..It is amazing what

services they provide. We had six

new members come along that

morning which was great .Our

next guest speaker was from Your

Aged and disability advocates.

ADAAUSTRALIA. We now have

a Wide Bay Advocate stationed in

Bundaberg for the first time. They

can work with family members,

carers and friends to raise and

address any concerns you have.

Our next guest on Monday is

the speech therapist from Blue

Care who is hopefully coming to

talk to us about starting up The

Parkinson’s Disease Education

Courses again. We lost them last

year because of staff changes and

have been pushing for them ever

since.

Now on the social side. We had

our first lunch outing after our

second meeting and 20 of us went

along for a delightful lunch and

a chin wag. We have lunch out

together every second meeting and

our second one is this Monday. It

is a great way to get to know each

other a little better. We also had a

delightful visit from Judy Learmonth

who is a coordinator from Elanora

group. Such a pleasure to meet.

We all would like to Congratulate

Sydney and Val Liddle on 60 years

of marriage. What a wonderful

achievement.

HELENSVALE

32 participants attended the

meeting in March which featured

Sarsha from Blue Care who gave a

great presentation on their services.

One of our members Barry

Coombes is making devices to

make things easier for PD patients.

CALOUNDRA

We have initiated a new section

in our programme. Playing with

games that will keep the grey

matter firing. Jigsaws, dominoes,

pick up sticks, play dough, etc as

members come in, they have the

opportunity to choose and play.

Very like the way they play with their

grandchildren.

YOUNG AT PARK

The Wednesday lunch group meets

at various clubs at 12pm and

the activity, as trialed at the 2017

October meeting is table games,

dice, UNO etc. November’s special

guest was Erica Rose Jeffrey

from Dance for Parkinsons, Erica

talked about dancing and led us

in a group dance activity to Green

Onions. The December meeting

was our Christmas gathering held

at the Kedron Wavell RSL Club was

a fun and happy time for all, we

played the present game and that

was hilarious. In mid December

a group from Young at Park,

The Conservatoriums’ ConQuest

Singers and their friends formed

“The Jewels” and entertained

the residents at John Wesley

Gardens, Geebung and Marycrest,

Kangaroo Point with Christmas

Songs and Popular tunes. It was

a joyful experience. The year was

a good one for engaging guest

speakers with informative talks, we

had: Santo Russo, Psychologist;

Allison Fenton, Physiotherapist;

Aaron D’Souza, Pharmacist; QUT

PHD Students - Jing, Nadeesha

and Vida; Erica Rose Jeffrey,

Director of Dance For Parkinson’s.

ROCKHAMPTON

Well what a year 2017 was. We have

advertised our branch meetings

during 2017 and new members are

coming.

Our break up was in November

at Sizzlers with most members

attending. That gathering saw the

completion of 7 years’ service for

our revamped committee. Plans are

underway for our 2018 meetings

which are held on the first Tuesday of

the month and are held in the School

of Arts in Rockhampton.

Jacquie Mackay, the ABC Capricornia

Breakfast presenter came and

interviewed a member with PD and

this was presented in the morning

show.

HERVEY BAY

January: We discussed the year

ahead and potential guest speakers,

the subsidised polo shirts, exercise

classes and medical ID bracelets for

our members as well as social events

for the year. February: John Wood

from Suncare discussed services

available from them and the various

care services available, how to

access them, the ACAT assessment

and home care packages.

March: Was our first social event

for the year and 25 people enjoyed a

most enjoyable event with a member

who lives in Portland Oregan (Sheryll

Reucker) dropping in to catch up with

friends. People with Parkinson’s sat

together discussing the challenges of

living with PD while carers prepared a

mouth watering lunch. Unfortunately

10 of our members could not attend

this meeting.

20 Parkinson’s Queensland Inc.


SUPPORT GROUPS

(Hervey Bay Cont.)

Also in March, Jaimie was invited by

OZCARE to sit on the Fraser Coast

Dementia Alliance Group and the first

meeting was held on 21 March.

April: Support Group members

held the annual information stall at

Stockland on 11 April from 8.30 am

to 2.30 pm. Not many enquiries this

year and we may consider other ways

to celebrate World Parkinson’s Day in

2019.

TOWNSVILLE

Was great to see 38 attend Christmas

lunch at the Brothers Leagues Club

in December. Has been a busy year

with numbers continuing to increase

within our group, so much so, that

we have had to change our meeting

location to the Oonoonba Community

Centre. Held our first meeting there in

November and all agreed it was going

to be a great venue with plenty of

room. We had Lee from Escape Travel

come along to talk about ‘Travelling

with Parkinson’s’

Special mention to Sue Jones and her

group of sewing friends, who came

up with a plan to make craft items and

sell them at the Christmas Markets to

support our group.

(Townsville Cont.)

Thanks ladies, for sewing madly for

weeks prior and manning the stall on

the night. Plants and books were also

donated and a thank you to those

people as well. Plans are already

underway for a bigger stall this year.

Mater Health Services North

Queensland recently invited PQI, in

particular Townsville Support Group, to

participate in their Community Connect

Provider Expo. We provided information

by way of Flyers & Brochures, but more

importantly there were People with

Parkinson’s (PwP) manning the stand.

We were kept busy talking to Allied

Health, Pastoral Care and Nursing

staff from the hospital. The information

was well received and hopefully this

will improve the patient care of PwP

during their stay in hospital and more

importantly, the support afterwards.

SOUTH BURNETT

Our first meeting for 2018 saw us

gather at the Murgon Uniting Church

Hall for a special morning tea with

some invited guests.

The guests included Phenella (Darryl’s

sister), Tom (local entertainer), Maree

(diabetic group coordinator) and Ancy

(Kingaroy friend), who joined in the

conversation and contributed to the

happy atmosphere. Tom McKenzie

kindly attended to get us all in a

light-hearted mood by playing a

selection of well-known songs on

the saxophone. Tunes included “You

Don’t Own Me” and “Don’t It Make

My Brown Eyes Blue” etc. Merrilyn

recited some “New Year” poems to

further entertain us. Thanks to Country

Cuisine Catering for setting up,

preparing the eats, and cleaning up

after us. This allowed all of us to relax

and enjoy the company.

Phenella drew the winners of the 2017

mini raffle and Joy chose the lucky

numbers for the day - 2 soap packs

donated by Iris from Graham House

and 2 bookmarks donated by Carmen.

Winners were Paul, Merrilyn, Tom

and Darryl. Darryl took some HAPPY

snaps for our photo collection which

is growing. Merrilyn and Tom’s photo

even featured in the SB Times.

Connections would love to feature updates from all of the

Support Groups throughout Queensland!

Please send your updates to supportgroups@parkinsons-qld.org.au

connections Autumn 2018 edition 21


SUPPORT GROUPS

A Trial Fitness Program to living Bigger and Larger

One member of the Tewantin-Noosa Parkinson’s Support Group

approached the gym he attended and his particular personal trainer

about working with a group of People with Parkinson’s.

Nikki A. Creber and Aaron Robottom explain the thought behind

the program and the impact it has to people with Parkinson’s.

Parkinson’s Disease is a chronic, progressive neurological and motor disease.

The neurotransmitter, Dopamine, is essential for many processes such as the

development of growth, tissue function, reproduction, how one sleeps, mood swings,

metabolism and more functions. Its production in the system is adversely affected

by the disease and its release occurs in ever decreasing levels.

We know that exercise is one of the best combatants to the progression of

Parkinson’s Disease and it works to slow the continual symptom onslaught.

It’s results happen to stimulate remaining dopamine in the system and its release.

With this in mind, Anytime Fitness Noosa offered a specialist exercise a pilot initiative - delivered by PT Aaron Robottom

(Robo), of First Point Fitness. Together Trainer Robo and gym manager, Ryan Charles, offered a very inviting trial where all

participants, (whether People with Parkinson’s or their carers) paid a nominal fee to attend each session.

Each session was carefully crafted by Robo to build self-esteem, improve motor facility, gait, strength and endurance and

better all-round fitness. The words, “use it or lose it” couldn’t be more accurate than in the world of people with

Parkinson’s.

Initially, a 45 minute session was offered once a fortnight and this proved a surefire hit with the participants. Parkinson’s

being a systemic disease, means that any changes in your immediate day-to-day lifestyle and environment can have catastrophic

and ongoing effects. Commencing fortnightly as a way to ease into the program, gave the 11 participants time to

allow their body to acclimate to these new demands and in a few weeks this became weekly with up to 16 participants.

During sessions, Robo kept a close eye on everyone and watched how they reacted and paced themselves throughout the

exercises. There were a number of over 80 years olds in the group who loved it!

Robo prepared a circuit type program interspersed with mindfulness activities - These activities highlighted the aspects of

brain fog, lack of initiative and slow sequenced movements that are part and parcel of this shape-shifting disease.

Over the months there has been a gradual build in crescendo of momentum and output, particularly with boxing, incorporating

complicated sequences and increasing in general intensity, it has also inspired a sense of comradery.

The group are a fitter, leaner and stronger group of people affected by Parkinson’s and are much happier as a result.

Editorial Contribution made by:

Nikki A Creber is a Parkinson’s

Coach, Counsellor, Guide &

Encourager while also being the

Founder & Creator of The

Parkinson’s Hero Club. Nikki

specialises in helping people living

with Parkinson’s, their carers, and

their families to navigate the difficult

areas in their lives brought about by

Parkinson’s and how to take control

of their Parkinson’s while learning to

thrive and soar.

22 Parkinson’s Queensland Inc.


PQI UPDATES

Our membership year kicks off on 1 July 2018 for 12 months so it is time to ensure your voice is heard.

Membership includes benefits like your personal copy of the ‘Connections’ magazine, access to our extensive library of

books, DVDs, and CDs along and access to PQI resources.

#MAKEPARKINSONSAPRIORITY

memoriam

Parkinson’s Queensland wishes to acknowledge

the donations which have been given by

families and friends in memory of the following

people. The thoughtfulness of the families

arranging for donations to be given to

Parkinson’s Queensland is greatly appreciated.

Arthur Spyve

Moya Norman

George Roberts

Margaret Simpson

John Leigh

Cheryl Wright

Barbara Varda

Ines Tapiolas

Hazel May Wright

Don McColl

Pat O’Loughlan

Graham Whelband

Beryl Wencki

Sid Coombs

Elspeth Harte

Alan Hall

Kenneth Mitchell

Alan Stanger

Stanley William Beynon Hall

Victor Austin

Ron Searle

Geoffrey Lloyd Precians

Nancy May Pierce

Keith Alexander Paroz

Bob Prove

Prudence Haussman

Eric O’Loughlaen

Ray John Edser

Trevor Murray

connections Autumn 2018 edition 23


PQI UPDATES

Valuing our Volunteers

From our support groups to our events, Parkinson’s Queensland relies

on the support of incredible people who give their time to help us

support those affected by Parkinson’s in Queensland.

National Volunteer Week was held on 21 - 27 May 2018 to recognise the incredible

contribution Volunteers make in Australia and to celebrate their efforts at every level.

At Parkinson’s Queensland, is proud of its volunteer program and the superstar volunteers who work in our office, volunteer at our

events and finally the Support Group Coordinators who really are the heart and soul of our organisation.

Spotlight on our Super Support Groups

All of our Support Groups and Support Group Coordinators do amazing things to advance the mission of Parkison’s Queensland

and to support people affected by Parkinson’s in Queensland.

The Heart and Soul of the

organisation at the Support Group

Coordinators Forum in 2017

To celebrate National Volunteer Week, we’re putting the spotlight on the amazing efforts from a few of our Support Group

Coordinators.

• David and Angela are the amazing driving force behind four Support Groups North of Brisbane. It is dedicated like this

that ensure as many people are supported as possible.

• Alan and Carole work hard to put together the largest support group in Queensland, Helensvale counts an average of 107

people as members and friends.

• Judy is so committed to supporting people affected by Parkinson’s that every month she commutes from Bundaberg to

Elanora to host the Elanora Support Group. Judy relocated early in 2018 but wanted to make sure make sure her members

are getting the assistance they need.

• Eva is the newest Support Group Coordinator, putting together a Support Group with a focus on carers. A person with

Parkinson’s herself, Eva thought it was important to support the caregivers, recognising the toll it took on them.

1. David and Angela

2. Alan and Carole

3. Judy

1 2

3

4

4. Eva

24 Parkinson’s Queensland Inc.


ABN 69 838 771 233

PQI UPDATES

Give a Little. Change a Lot.

Volunteer Highlights

Our in-office administration volunteers are vital to the

everyday operations of the office, assisting with

clerical and administrative duties in a range of areas.

get involved

Each event is unique - you can assist with set up,

collecting donations, preparations, greeting people

on arrival or sharing information and resources at

one of our fundraising or educational events.

The Value of

volunteering

get involved

Support Groups are the frontline of Parkinson’s

Queensland – You can help coordinate meetings

and activities in your local community.

Our in-office administration volunteers are vital to the

everyday operations of the office, assisting with

To clerical find out and more, administrative contact the duties team in a range of areas.

P: 07 3209 1588 or E: supportgroups@parkinsons-qld.org.au

N 69 838 771 233

it 2/25 Watland Street Springwood QLD 4127

w.parkinsons-qld.org.au

10 people volunteered their time to

ride get across involved

Cambodia with the aim

of Parkinson’s Awareness.

19 people volunteered their time to

make ‘A Walk in the Park’

a huge success

A volunteer partnership with both

Griffith University and University of

Each event is unique - you can assist with set up,

Queensland ensure that students

get collecting involved

donations, preparations, greeting people

are on gaining arrival or sharing practical information and knowledge resources at of

one of our fundraising or educational events.

the impact of Parkinson’s

everyday operations of the office, assisting with

the to vital are volunteers administration in-office Our

clerical and administrative duties in a range of areas.

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can assist with set up,

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P: 07 3209 1588 or E: supportgroups@parkinsons-qld.org.au

everyday operations of the office, assisting with

team the contact more, out find To

clerical and administrative duties in a range of areas.

Volunteers assisted at the

Townsville Newly Diagnosed Forum

to provide extra support for those in

Support Groups are the frontline of Parkinson’s

Queensland – You can help coordinate meetings

and activities in your local community.

Our in-office administration volunteers are vital to the

To everyday find out more, operations contact of the attendance

office, team assisting with

P: 07 3209 1588 clerical or E: supportgroups@parkinsons-qld.org.au

and administrative duties a range of areas.

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Watland Street Springwood QLD 4127

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nit 2/25 Watland Street Springwood QLD 4127

ww.parkinsons-qld.org.au

Our in-office administration volunteers are vital to the

community.

local your in activities and

Support Groups are the frontline of Parkinson’s

Queensland – You can help coordinate meetings

and activities in your local community.

To find out more, contact the team

P: 07 3209 1588 or E: supportgroups@parkinsons-qld.org.au

Queensland

Volunteers provided

133.4 million hours

work in 2014

Supporting the Support Groups

Unit 2/25 Watland Street Springwood QLD 4127

ABN 69 838 771 233

www.parkinsons-qld.org.au

Incredible office support volunteers

assist Each event in making is unique - you our can assist Membership

with set up,

collecting donations, preparations, greeting people

Program and Support Groups

on arrival or sharing information and resources at

possible one of our fundraising or educational events.

42 people give their time as

Support Group Coordinators to

support those affected by

Parkinson’s

The current wage

rate used to work

out the value of

volunteering

if you want to know more about how to volunteer

with Ronald McDonald House South East

Queensland email our Volunteer Team today

Volunteering was

worth $11.6 billion

to the Queensland

economy in 2014

We’re currently looking for some amazing people who have a heart of gold and loves a to do list to come on

board as a volunteer Support Group Coordinator.

A Support Group Coordinator takes on the mammoth task of administering the group, hosting the Support Group meetings

and events, seeking guest speakers and arranging activities for everyone who attends. They also do a tremendous job

of raising awareness locally of Parkinson’s one Disease of our and acting fundraising as an advocate or on educational our behalf. Most importantly, events. they act as a

friend and confidante to those affected by Parkinsons and support them on their journey.

We need Support Group Coordinators in the following areas:

• Bribie Island

• Elanora

• Geebung/Zillmere

• Granite Belt/Stanthorpe

• Ipswich

• Mitchelton

• Nambour & District

• Rockhampton

• Strathpine/Lawnton

Our in-office administration volunteers are vital to the

everyday operations of the office, assisting with

clerical and administrative duties in a range of areas.

Queensland – You can help coordinate meetings

Parkinson’s

of frontline the are Groups Support

Unit 2/25 Watland Street Springwood QLD 4127

233 771 838 69 ABN

Each event is unique - you can assist with set up,

collecting donations, preparations, greeting people

on arrival or sharing information and resources at

everyday operations of the office, assisting with

Unit 2/25 Watland Street Springwood QLD 4127

233 771 838 69 ABN

P: 07 3209 1588 or E: supportgroups@parkinsons-qld.org.au

clerical and administrative duties in a range of areas.

team the contact more, out find To

www.parkinsons-qld.org.au

collecting donations, preparations, greeting people

can assist with set up,

you - unique is event Each

Support Groups are the frontline of Parkinson’s

Support Group Coordinator, please contact:

Queensland – You can help coordinate meetings

SupportGroups@Parkinsons-Qld.org.au

volunteering@rmh.org.au

and activities in your local community.

one of our fundraising or educational events.

at

resources and information sharing or arrival on

Queensland – You can help coordinate meetings

Parkinson’s

of frontline the are Groups Support

and activities in your local community.

P: 07 3209 1588 or E: supportgroups@parkinsons-qld.org.au

team the contact more, out find To

www.parkinsons-qld.org.au

If you think you could be our next superstar

connections Autumn 2018 edition 25


DONATIONS

Thankyou for your generosity

Parkinsons Queensland Inc, appreciates the support of our generous donors whose funds make it

possible for us to support people affected by Parkinon’s all throughout Queensland.

October 2017

M. Bowen, Bundaberg Support Group, City of Gold Coast,

Clairvoux MacKillop College, W. Curnow AM, B. Dominguez,

D. Dowling, V. Garrett, L. Gilmore, A. Hitchcock, Z. Horton,

R. Jeffrey, R. & M. Jones, S. Klien, W. & R. Lee,

Logan Support Group, K. & R. MacLean, G. Markham,

T. Mattes, T. McIntyne, J. Medhurst, D. Metford, R. Norman,

G. Pendercast, N. Prentice, L. Purcell, K. Russ,

J. Simpson, M. & S. Smith, P. Spicer, D. Stewart,

Tewantin/Noosa Support Group, P. Thie, N. Toumbas,

J. Trewben, J. Wantstall, R. Winkler

November 2017

G. & G. Bickle, A. Bilgi, K. Brown, D. Dowling,

Geebung/Zillmere Support Group, M. Gillett, A. Gunthorpe,

R. & J. Henderson, S. Henwood, J. Hoare, R. Khatri,

Lockyer Valley Regional Council, A. Lundie, J. Mc Inally,

W. Means, M. O’Keefe, QFleet, Queensland Country

Women’s Assoication, M Quifty, Roma Support Group,

K. Russ, V. Sales, G. & D. Santarossa, T. Vance, J. Wallis,

C. Whitecross, F. Williams, R. Winkler

December 2017

Association of Financial Advisers Ancillary Fund, S. Black,

Burdekin Support Group, D. & K. Cini, City of Gold Coast, D.

Dowling, A. Dunn, Fairholme College,

Floral Art Society of Caboolture Inc., R. Gatehouse,

Halcyon Management,

S. Harris, A. Hitchcock, J. & M. McCahill, G. Mellick, K. Russ,

St Christopher’s Anglican Guild,

Strathpine/Lawnton Support Group, The Just Cause Bunch,

J. Wantstall, R. Winkler

January 2018

J. Askern, B. Askin, Bribie Island Support Group, Bundaberg

State High School, E. Cole, S. Condon, N. Crowther,

D. Dowling, A. Finnimore, Golden Wattle Chapter No 4,

D. Hall, G. MacKinnon, Mitchelton Support Group,

R. Morphett, M. Park, Power2, K. Russ, F. Ryder, P. Webb,

E. West, R. Winkler

February 2018

K. Beumer, J. Bird, K. Boothey, C. Brazier, W. Brenden,

M. Brennan, K. Brothers, D. Brown, S. Brown, B. & L.

Burger, J. Catalano, M. Challoner, T. Chu, G. Clifford, M.

Cran, B. Currant, R. Davmor, C. De Groot, R. & K. Donelan,

D. Dowling, A. Edwards, F. Filiaggi, P. Finn, R. Forster,

A. Galli, M. & M. Garburo, S. Grady, N. Groves,

D. & L. Hall, R. Hall, N. & E. Harris, H. Horne, Ipswich Little

Theatre Society Inc, B. Johnston, N. & A. Kane,

D. Kelly, A. Kennedy, J. & J. Kincade, A. King, P. Lamont,

C. Lehnmann, A. & M. Lynch, R. Mackenroth, D. Marshall, A.

& E. McVicar, A. Menanteau, V. Mertens, K. Miller,

J. & S. Milne, Morgans Foundation Limited, K. & M. Moxley,

C. & C. Neil, P. Newman, I. Nichols, R. Norman, M. O’Keefe,

L. Palmer, P. Papalexiou, M. Parr, R. Peterson, K. Philip, K.

Russ, R. Salomon, T. Sargeant, G. Schulz, G. Searle, C.

Shapter, W. Sharman, B. & T. Smith, K. Spencer,

K. & R. Spencer, G. Stanger, R. Toon, B. Veling, J. Weston,

E. Williams, R. Winkler, S. Wood, M. & G. Yardley,

March 2018

J. Angell, L. Arthy, R. Bartlett, M. Brady, C. Brain, C. Brown,

Bundaberg Support Group, J. & P. Collie, C. Costello,

L. Dickinson, M. Dixon, D. Dowling, S. Ducker, N. Duffin,

R. Dunning, R. & J. Elliott, P. & J. Hargraves, L. Henderson,

M. Holden, D. & G. Kay, M. Kerr, V. Kuorikoski,

R. & C. Lockhart, C. Mawn, A. Page, L. Paroz,

E. & K. Philpot, G. Pink, J. Precians, I. Preston, D. Rescei, K.

Russ, J. Smith, M. Smith, P. St Henry, H. & C. Taylor,

M. Taylor, L. Tellam, The Just Cause Bunch, Y. Tobin,

Townsville Support Group, T. Waters, A. Wicks, G. Williams,

R. Winkler

April 2018

V. Davis, E. & N. Dickinson, D. Dowling, R. Eggleton, C.

Hinspeter, J. Hooper, W. & R. Lee, B. Leong, W. Merrilees,

T. Mulchay, B. & E. Nolan, K. O’Maley, L. Potts, K. Russ, P.

Thorp, E. Watkins, J. Watson, R. Winkler

May 2018

K. Burton, R. Derksen, D. Dowling, B. Dungavell,

R. Higgins, C. Hinspeter, S. Lahovec, J. Leaman,

G. MacKinnon, National Seniors Corinda Branch,

M. O’Keefe, M. Park, B. Prentice, Y. Riek, K. Russ,

E. Stewart, T. Taylor, Team TT&T, The Pharmacy Guild of

Australia-Queensland Branch, R. Winkler

26 Parkinson’s Queensland Inc.


GIVE THE GIFT OF HOPE THIS TAX TIME!

Help us support those affected by Parkinson’s by giving your Tax Deductible Gift

before June 30.

Your ongoing support is vital for us to continue to assist the lives of the 17,000

people with Parkinson’s in Queensland. Without donations from the community,

our message will not reach all of the corners of our State.

Please give generously in support of all people affected by Parkinson’s. You never

know how many lives you can change with your thoughtful donation.

For more information, please call our office

or fill out the form below and return to us at:

PO Box 1684,

SPRINGWOOD Q 4127

development@parkinsons-qld.org.au

Donation Form - Thank you for supporting us as we all make a difference together.

Title: (please circle)

Mr / Mrs / Ms / Miss / Dr / Prof.

Address:

Telephone:

Email Address:

First Name:

Mobile:

Surname:

Post Code:

Payment Details:

Please add me to your mailing list

I would like to donate via cheque (enclosed) - Amount $

I would like to donate via credit card - please charge my card as per details below:

$100 $50 $25 Other $

One time only Every month Every three months

Card Type: Visa

MasterCard

Card Number:

Name on Card:

Expiry Date:

Signature:

I would like to donate via EFT and have transferred the following amount to the Parkinson's

Queensland bank account listed below $100 $50 $25 Other $

Account Name:

Parkinson’s Queensland Inc.

BSB:

638 - 070

Account Number:

1127 4727

Reference:

Please use your name.

I would like more information about how I can remember Parkinson’s Queensland in my will.

This donation is made in honour of (please provide a name)


Facts About Parkinson’s

Parkinson’s disease is the second most common neurological condition in

Australia but remains one of the least understood.

OVER

70,000

AUSTRALIANS HAVE

PARKINSON’S

MORE THAN

17,000

OF THESE ARE

QUEENSLANDERS

MORE THAN

700,000

AUSTRALIANS

ARE IMPACTED

53%

ARE MALE

47%

ARE FEMALE

$$$

Someone in Australia is

diagnosed with Parkinson’s

every 47 minutes.

The total economic cost

of Parkinson’s is around

$9.9 billion p.a.

OVER

32PPL

DIAGNOSED

EVERYDAY

OVER

11500

NEW CASES

EACH YR

OVER

12000

OF WORKING

AGE

OVER

2300

ARE IN THEIR

30S & 40S

OVER

8500

ARE IN CARE

FACILITIES

OVER

82%

ARE OVER

65YRS

Source: Deloitte Access Economics 2014/2015

Parkinson’s Queensland Inc

ABN 69 838 771 233

Unit 2/25 Watland Street Springwood QLD 4127

FreeCall: 1800 644 189 ∞ Tel: 07 3209 1588 ∞ Fax: 07 3209 1566

Email: pqi@parkinsons-qld.org.au ∞ Web: www.parkinsons-qld.org.au

Social Media: @parkinsons

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