No. 151 October - December 2014 (inTouch

A Walk In the
Park
This year’s annual walk,
now called A Walk in
the Park, was held at
Bonython Park on
Sunday 14 September.
Over 350 people and a
large number of friendly
family dogs walked
around the banks of the
Torrens River area
enjoying the camaraderie and
supporting those whose lives are
affected by Parkinson’s and other
movement disorders. Once again,
Graeme Goodings, Channel 7 News
Reader, compered the event, with DBQ
Group providing musical entertainment.
Participants enjoyed a sausage sizzle,
cheerfully cooked for us by the City of
Adelaide Lions Club for the fourth year
in a row.
The Port Adelaide and Masters
Athletics Clubs provided wonderful
organisation and assistance around
the walking track and many people
enjoyed the opportunity to relax as a
result of the after walk massages
given by volunteers from the
Australian College of Massage.
Stephen Wade, Shadow Minister for
Disability (pictured) walked the route with
CEO, Christine Belford.
Welcome to the evolution of our newsletter from the Tulip Times to
intouch. The rolling out of the new national branding, based around the
theme that we are all In This Together provided the opportunity for a
new name and a refreshed look for this iconic newsletter. The name
intouch reflects the main purpose of the newsletter, that is a way for
Parkinson’s SA to keep in touch with you, to inform and inspire you.
Inside you will find all the regular features that you have come to expect
and look forward to. We very much hope that you enjoy the new look
and over the next editions we will be developing the layout
and presentation of the newsletter even more.
Page 2
Photos by Darren Clements Photography
For more photos go to https://www.flickr.com/
photos/54370246@N03/
A Walk in the Park
President’s Annual Report 2013-14
Page 3
During my time with PSA I cannot remember a year in which the
organisation has moved forward on so many fronts.
Planning for the National Conference has been a big undertaking but is
well under way and we are pleased to have engaged two outstanding
International keynote speakers. Professor Roger Barker is a world
leader on new technologies for the treatment of Parkinson's and
Professor Caroline Tanner is renowned for her work on genetic and
environmental predisposition in the development of Parkinson's.
I would ask all members to lock in the conference dates.
Christine Belford (CEO) has been heavily involved in the coordination
of the re-branding of the national Parkinson's image and there is
general agreement that it is a much more modern look and very eye
catching. PSA was able to launch the rebrand with the conference
publicity which was timely.
Members may not be aware of the great work that Paul and Christine have been doing at the
National level. Paul has been instrumental in negotiating for the return of Parkinson’s NSW to
Parkinson’s Australia and has been a key player in developing a National Advocacy Strategy.
Christine has been instrumental in obtaining a significant Federal Government Grant to
develop a national training package for residential care staff, with PSA managing the project. This
grant has resulted in new staff and has in part enabled us to expand our premises.
Another major development that has occurred through Christine's hard work has been the
acquisition of Home and Community Care (HACC) funding in our own right. Not only has this
expanded our funding base but it will enable us to apply for future funding.
continued over →
Parkinson’s South Australia
1800644189
Committee of Management
Staff
President: Assoc Prof John Power
Chief Executive Officer
Christine Belford
Treasurer: Steve Whitehouse
Aged Care Project Officer
Norman Radican
Members:
Group Programs
Anne Heard
Alison Ballantyne
Support and Information
Stevie Ferguson
Barbara Celmer
Paula-Jean Hayes
Paul Davies
Sharne West
Tony Harris
Marketing and Fundraising
Joanna Cook
Helena Kyriazopoulos
Office Administration
Isobelle Brettt
Geoff McKinnon
Miriam Whitford
Judy White
Newsletter Editors
Assoc Prof Rob Wilcox
23a King William Road, Unley, South Australia 5061
PO Box 466 Unley, South Australia 5061
Telephone:
08 8357 8909
Facsimile:
08 8357 8876
Email:
[email protected]
Website:
www.parkinsonssa.org.au
Sandie Clarke
Christine Belford
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Page 4
continued
I would like to sincerely acknowledge the
assistance given by Helping Hand Aged Care in
this area. Through Helping Hand’s auspice we
have been able to access HACC funding over
the last three years and this has been a major
step in the development of PSA.
A highlight on the election front was the
commitment from both major parties to support
Parkinson's nurses. The current government had
offered to support the Parkinson’s Nurse position
at the Flinders Medical Centre and fund three
more positions. Unfortunately due to budget
restraints these have not eventuated but we are
determined to keep up the pressure to have
these commitments.
Late last year, Mr John Stockwell
contacted the Parkinson’s office and indicated
that he wanted to ride around Australia to raise
money for PSA. Coincidentally, two members of
the Committee of Management also happen to
be motorcyclists and were riding to the mid north
past John Stockwell's house, so they dropped
into his home to discuss his plan. Six months
later, with great support from the staff at PSA he
had ridden around Australia one and a half
times, raising the public profile of Parkinson's
and raising over $32,000 for PSA. A particular
highlight of this journey was that, due to John's
infectious enthusiasm the World Super Bike
Meeting adopted Parkinson's as their nominated
charity, which was great for raising public
awareness.
We have had many great events during
2013/14. The Lifestyle Weekend was held on the
banks of Lake Bonney at Barmera in March
2014. It was an informal family focussed meeting
with many great talks on a range of topics
relevant to people affected by Parkinson's. It
was brought home to me what a great team we
have at PSA when the caterer pulled out at the
last minute. The PSA staff quickly stepped in
and coordinated the catering and prepared the
food. Although it probably added an extra stress
to the staff none of the attendees knew of the
issue. These weekends have been a great
success and are a great opportunity for both the
city and rural Parkinson's groups to link up.
The Unity Walk in September 2013 was
a great success, with the largest number of
walkers so far. This continues to be a great
event for raising funds and public awareness.
President’s Annual Report 2013-14 cont
I would like to take this opportunity to
sincerely thank the staff at PSA for all their
efforts over the last twelve months. They
continue to give great support to people
affected by Parkinson's through counselling,
education and coordinating our many
support groups. I would also like to thank
the Support Group Leaders for organising
their respective groups. I would especially
like to acknowledge the late Jenny White for
her lobbying efforts on behalf of people
affected by Parkinson’s through her talks
and her television interview on Channel 9
last December in support of the Parkinson’s
Nurse position. My sincere condolences go
to Committee Member, Lindsay White on
Jenny’s passing.
I would like to thank my fellow
Members of the PSA Committee of
Management for all their efforts this year. It
has been an exciting year particularly with
the planning for next year’s National
Conference. We have a change on the
Committee this year as our Treasurer,
Grant Males, is moving to Hong Kong with
his family. Grant has given PSA excellent
service as Treasurer and will be
remembered for his great financial graphs.
Although this would normally be reported
next year, it is appropriate to welcome
Steve Whitehouse who has agreed to take
on the role of Treasurer.
Finally, I would like to acknowledge
and thank Christine Belford (CEO) for the
great work she has done this year. Christine
has worked tirelessly on behalf of PSA on
many fronts. Through her efforts we have
obtained more funding, the Aged Care
Grant, appointed new staff and managed
the PSA office while continually advocating
on behalf of people with Parkinson's.
Lastly, I would like to thank everyone
involved with PSA for their contribution in
making this such a great organisation.
Regards
John Power (PSA President)
Link to Today Tonight Story on
the Parkinson’s Nurse positions
http://www.todaytonightadelaide.com.au/
stories/parkinsons-carers
CEOs Annual Report 2013-14
Page 5
This, our 30th Year, has been a highly significant Convention Centre from
one in the history of Parkinson’s SA in terms of
27-29 May 2015,
recognition of the Association and the needs of
including the securing of
people with Parkinson’s and our achievements in two first rate international
fulfilling our mission.
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them for yourself.
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could be for
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make these decisions
rangements
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yourself.
personal matters? Who
services provided for South Australians with
which will continue over three years. As well as
would you want to make
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and
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Disorders,
has
the development of the package, the project
these decisions for you?
For more information,
or an evaluation by the WISeR group at the
been our success in lobbying for Parkinson’s
includes
a step by step guide
to
Nurse Specialist positions.
University
of Adelaide which will add significantly
help you
complete
andknowledge of this area. Norman Radican
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been an ongoing campaign since
2007
to our
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print your own Advance
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was employed from September 2013 as Project
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visit
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www.advancecaredirecti
comes into
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1 July 2014.
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we have had to raise a
Montreal on behalf of Parkinson’s SA. Over 3000
you to: campaign to ‘save’ the position. I acknowledge the delegates form all around the world came to
work done in this regard by theAuthorised
late Jenny
participate and be inspired by the latest research
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by David
wishes, preferences
White, herand
husband and Committee of Swan, Chief Executive,
and people’s stories of living with Parkinson’s.
Management Member, Lindsay White,SA
theHealth
Whilst in Canada, I took the opportunity to visit
members of the Brighton Support Group and other Parkinson’s Society Eastern Ontario in Ottawa to
individuals affected by Parkinson’s.
discover that their issues and passions are very
Successful campaigning saw both major political similar to our own.
Parties commit to fund 3-4 positions if they were
As well as the staff mentioned above, I would like
elected. Although the Labor Party promise for 3
to pay tribute to the excellent administrative
positions additional to the one at Flinders Medical support given to Parkinson’s SA by Judy White,
Centre remains the topic of ongoing discussion
Isobelle Brett who joined us in November 2013
with the Minister for Health and the Department,
and Anastasia Papas, who left us in February
these election promises were a substantial
after 6 plus years of dedicated service. Along with
acknowledgement of South Australians living with our wonderful group of office volunteers they allow
Parkinson’s and the ability of Parkinson’s SA to
us to achieve great things and to punch well and
bring them into the political arena.
truly above our weight.
Other significant developments in South Australia
were:
Kind regards, Christine Belford
1. The planning in earnest for the Parkinson’s
Australia National Conference to be held at the
From the Support Team
Page 6
Parkinson’s SA provides a free, confidential telephone information and
support service staffed by Paula-JeanHayes, Sharne West and Stevie
Ferguson. The Support Line does not provide medical advice but aims
to provide information and resources to assist people to understand and
live well with Parkinson’s.
Carers play a unique role and the following
is an exerpt from an interview with a carer:
Please describe some of the advantages of
caring for a partner with Parkinson’s:
“By providing care to my partner I have enabled
them to stay at home and as a couple this is a big
advantage. Also when the children want to see us
it is so much more comfortable and relaxed for
them to see us at home. By staying in our home
we are able to keep our social connections and
remain in familiar surroundings.
I have learnt more about myself and have
found I have more patience than I thought. I have
gained understanding about other people and
how others manage with a disability. I have learnt
new ways to do things and realised skills I did not
know I had. It has made me more understanding
and empathetic towards others.
I have realised the need to be pro-active about
arranging services and Parkinson’s SA have
helped me to do this. The staff and groups have
helped me enormously and from the first meeting
I felt a sense of belonging and welcome that I had
not experienced before. From other members
and carers I have discovered so much
information about services which has been a
great back up for me. I have made many new
friends and these are friends who truly
understand what it is like to care for some-one
who has Parkinson’s.”
How would you describe some of the
challenges of caring for some-one with
Parkinson’s:
“ I have felt that my freedom has gone and this is
true for me and my partner with Parkinson’s. No
longer can I just do what I want to do, when I feel
like it ..I am always thinking and planning for
someone else, and this can be exhausting. I have
a great sense of loss of opportunity and this has
led to a feeling of sadness and grief. I feel have
missed out on doing many of the things I had
wanted to do and I am sure this is the same for
my partner with Parkinson’s. I feel guilty when I
think of myself and wish things were different. I
feel sadness for the changes that Parkinson’s
has brought into our lives and sometimes feel it
has “taken over.”
The most overwhelming feeling has been the loss
of freedom and that has been for us both!
What are some helpful hints you would give
to other carers of people with Parkinson’s?
“Most importantly I would say, “Accept help and
involve others”. It is very hard to admit that we
need help and we often struggle on and try to
do everything. Getting family involved and
encouraging them to find out more about
Parkinson’s is really helpful. By understanding
the illness they are better prepared to cope with
the changes and will know how to be more
helpful. The Learning and Leisure weekend at
Barmera was really great for this…it was a time
when the family could be together and gather
information about Parkinson’s and how they can
be involved.
“Don’t let Parkinson’s rule your life”. It is so
important to be in charge of your own life and
not to let the diagnosis take over. This is very
difficult at times but it is really important to do
things that do not revolve around this illness. It
takes so much away. It is important to try and
maintain your identity and as much of your life
style as you can. Join a Carers’ group. To be
with other carers and to be able to talk freely
about some of the challenges you may face is
also very important. I have been to the Carers’
groups in many different moods, sometimes
happy sometimes, quite down, but I always feel
better after I have talked with other carers. They
really understand how I feel and there is no
judgement but often very helpful
suggestions. Many people do not want the label
of “Carer” and initially I felt like this too, but
when you realise that there are many services
and people out there to support you, the label
can work for you and connect you with people
and services.
Staying positive and moving toward acceptance
is important. Looking back and wishing things
were different, often only brings resentment and
negativity. We all have these feelings but I have
found it helpful to not let these overwhelm me
and try and stay positive and look at what we
can still do rather than what we cannot do.
Finally have Fun! Sometimes it feels that our
diary is full of Parkinson’s things and it is
important to do things that do not revolve
around Parkinson’s. Stay in contact with your
friends and family and try and plan activities
that do not involve Parkinson’s. Take time to
plan fun activities with family and friends
and try to continue to enjoy life.”
Carer Information from the Support Team
Page 7
Celebrating Carers Week
This October Parkinson’s SA received an honourable mention in the Carers’ Excellence Awards
held at the Adelaide Festival Centre. Christine is pictured here receiving a certificate from CEO
of Carers SA, Rosemary Warmington and Lyn Woodforde, President. This was a day when
carers were recognised for all that they contribute to the care of others and to the community in
general. It seemed timely therefore to devote this space to all the carers who provide such great
support to their partners, parents and
friends who have been diagnosed with
Parkinson’s.
Carers were also acknowledged at a Pampering
Day held at PSA and facilitated by Sharne.
Carers enjoyed hand massages, positive
messages and delicious food together.
Counselling for Carers
The National Carer Counselling program provides 6 sessions of
confidential counselling for family carers.
Counselling is available in most areas across the state via the
telephone or face-to-face.
By phoning 1800 242 636 you can talk to someone about your situation
and be referred to the counselling service
Cost is minimal and fees can be waived in certain circumstances
Of course, carers are welcome to call the Parkinson’s Support Line as
well, however, the six sessions of counselling may provide more in
depth support especially geared to the role of the Carer.
Carer Support and Respite
Carer Respite is available on an emergency and short term basis
for family carers across the state. Flexible respite options will be
explored by staff to ensure family carers are able to take a break
from their caring responsibilities.
To find out more call the
Commonwealth Respite Centre on 1800 052 222
There are also support groups for family carers and young carers in
most areas across the state.
To find out more information about these groups and other carer
services call 1800 242 636 to speak to a carer advisor.
Page 8
Inspirational People doing Inspirational Things
Trek to Everest Base Camp for People affected by Parkinson’s
Ever dreamed of climbing Mt Everest?
Not content with cycling around Adelaide, Heiko Maurer and Mike
Hannan are currently exploring all the aspects of a possible trip to
the Everest Base Camp later next year. Their aim is to show that
people with Parkinson’s can achieve great things. If you are
interested in learning more about this adventure, and perhaps in
taking part, they are keen to meet you and invite you to come
along to an
Information Session on Wednesday 26 November at the PSA
Office at 5.30pm. RSVP to 83578909.
Forced rate cycling and its benefits for Parkinson’s
Katie Hannan’s passion for cycling and for her Dad, Mike, has led
to the beginning of a fascinating project exploring the benefits of
forced rate cycling, here in Adelaide. Using a self monitoring
digital device participants can track their own progress whilst
undertaking exercise that has been shown to positively improve
the symptoms of Parkinson’s. Parkinson’s SA is supporting Katie
in her venture and James McLoughlin, Senior Lecturer
Neurological Physiotherapy/Occupational Therapy at Flinders
University has also come on board and will add a clinical research
component to the project. The cycling will be done on stationary
bikes in a gym setting. People with Parkinson’s are sought to join
the project. Please contact the PSA Office for more information.
Support Group Leader Profile
Rikki with the new
Brighton Support Group
sign, made possible by a
grant from Brighton
Council.
My name is Rikki Howard and I was diagnosed with PD
13 years ago. I was a teacher for over thirty years,
twenty-five of which I worked managing teams of
teachers in areas like the Arts and Middle Schooling.
My background in team management has been very
useful in my role at the Brighton Support Group. We
are a large group and we manage the group’s activities
and programme by committee. Each person seems to
bring a unique skill set to the group, making the
running of the group so much more effective. My role
as chairperson of the committee is essentially to help
facilitate and encourage the ideas that come out of the
committee process. The group aims to offer support to
all those on the journey with Parkinson’s. Our current
focus is on the promotion of the group within our local
community, but also the broader promotion of
Parkinson’s Disease, increasing the profile and general
public awareness of what we all live with every day.
Research on Cognitive Impairment in Parkinson’s Disease
Hello! I wanted to take this
opportunity to introduce myself
to the Parkinson’s community
here in South Australia. My
name is Dr Lyndsey CollinsPraino, and I have just moved to
Adelaide from New York City.
I’m a Lecturer at the School of
Medical Sciences at the University of Adelaide, where
my work focusses on understanding and developing
treatments for non-motor symptoms, particularly
cognitive impairment, in Parkinson’s disease (PD). I first
became interested in this topic while completing my
PhD at the University of Connecticut in the USA, where
I was investigating the use of adenosine A2A
antagonists for the treatment of motor impairments,
such as tremor, in PD. During the course of my work, I
started to learn about the major role that non-motor
symptoms play in the disease. There is growing
evidence that non-motor symptoms may be even more
important indicators than motor impairment of the future
quality of life for patients and caregivers. Additionally,
studies suggest that non-motor symptoms may pre-date
motor symptoms by several years, which means that
they could serve as an early clue to Parkinson’s
disease, allowing us to detect and treat the disease
earlier and more effectively.
While PD patients may exhibit a variety of nonmotor symptoms, including anosmia (reduced sense of
smell), depression, constipation and many more, I am
particularly interested in understanding the development
of cognitive impairment in the disease. In a study of
newly diagnosed PD patients, 24% of patients exhibited
cognitive dysfunction, compared to only 4% of controls
(Muslimovic et al. 2005). Studies have suggested that
some degree of cognitive impairment is present in 80%
of PD patients within 12 to 20 years after motor
symptom emergence. These cognitive deficits range
from mild cognitive impairment to full-blown dementia.
Despite growing recognition of the high prevalence of
cognitive dysfunction in PD, however, the brain
mechanisms that may lead to the emergence of
cognitive decline are still poorly understood, and
treatment options are limited.
One potential mechanism that could help to explain the
cognitive dysfunction seen in PD is neuroinflammation
(i.e. inflammation within the brain). A growing amount of
evidence has supported the hypothesis that toxicity
derived from neuroinflammation could help to lead to
the loss of dopamine-producing neurons in the brains of
PD patients, resulting in the emergence of the
symptoms of PD. Recently, it was proposed that
neuroinflammation may also influence the development
of cognitive impairment and dementia in PD (Barnum
Page 9
and Tansey, 2012). Increased blood plasma
levels of one inflammatory factor, soluble
tumor necrosis factor receptors, are known to
be associated with poorer cognitive tests
scores in PD patients (Rocha et al., 2014).
Similarly, I recently showed that levels of
another inflammatory marker, ICAM1, are
increased in the brains of Alzheimer’s disease
(AD) patients, a disease known to be
associated with severe cognitive impairment.
Given the recent data reported at the 2013
Alzheimer’s Association International
Conference about the pathological similarities
between PD and AD, and the known
increases in inflammation seen in AD, it is
reasonable to predict that elevated
inflammatory levels may also be related to
cognitive impairment in PD. Thus, it is critical
to examine how inflammatory markers may
impact the development of cognitive decline in
PD.
My work attempts to answer this question by
analyzing how one such inflammatory marker,
ICAM1, is related to cognitive function,
symptom severity and the extent of neuron
loss in both human PD patients and
experimental models of PD. It is possible that,
rather than being harmful to neurons, ICAM1
might actually protect against neuronal death.
Recently, I showed that higher ICAM1 levels
were associated with lower levels of amyloid
beta, a pathological peptide, in AD patients
(Collins-Praino et al. 2014), and ICAM1 has
been shown to lead to the expression of an
enzyme that clears amyloid plaques, one of
the main pathological brain markers of AD
(Kim et al. 2012). It is possible, therefore, that
elevated ICAM1 levels could also be related to
reduced alpha-synuclein levels and improved
cognitive function in PD, a hypothesis that my
lab is currently investigating.
Since several studies have suggested that
non-motor PD symptoms, such as cognitive
impairment, may pre-date the emergence of
motor abnormalities by several years (Hubble
et al. 1993), a greater understanding of how
neuroinflammation is related to the
development of cognitive decline could
potentially allow for the detection and
treatment of the disease at earlier stages.
Additionally, an exploration of whether ICAM1
protects against neuron loss could lead to a
new, more effective treatment strategy for PD.
Page 10
A MELBOURNE firm is expanding its
production of wearable technology
designed to help people with Parkinson’s
live a better quality of life.
The technology, a wristband called the
Parkinson’s Kinetigraph, has a built-in
accelerometer like the common one found in
smartphones and wearable tech devices such
as the Jawbone Up and Fitbit Flex.
The Kinetigraph collects raw movement data
which shows the symptoms of Parkinson’s
disease. Clinicians can use the data to finetune medication.
The Melbourne-based Global Kinetics
Corporation managing director Andrew
Maxwell said the firm had developed two
software algorithms that turned the wristband
data into information discernible to doctors.
Patients typically wore the device for 10 days.
It measured the level of “bradykinesia” — the
slowness of movement patients experienced at
the onset of symptoms. Bradykinesia typically
is treated with dopamine replacement therapy.
The device also measured “dyskinesia” —
more advanced symptoms of Parkinson’s
characterised by involuntary muscle
movements.
“By finely tuning medication levels, sufferers
could have more time in the near-to-normal
state at the beginning of symptoms, and hence
an improvement in their quality of life through
better movement”, Mr Maxwell said.
Parkinson’s
Global Kinetics, a private Australian company
incorporated in 2007, has focused on Parkinson’s
since its inception, through the initial research and
development phases to commercialisation and
production.
The device was first developed at the Melbourne
based Florey Institute of Neuroscience and Mental
Health through work undertaken by Professor
Malcolm Horne and Dr Robert Griffiths. They
co-founded Global Kinetics Corporation.
The original Kinetigraph bands were launched in
2012, with 500 sold so far. They were sold to
hospitals which provided them to patients for 10
days’ medical surveillance.
The wristbands alert patients as to when to take
prescribed medication and patients could time
stamp when they have taken it. Kinetigraphs are
used in 50 hospitals in nine countries: Australia,
Germany, the Netherlands, Norway, Sweden,
Denmark, Malaysia, Hong Kong and Thailand.
Global Kinetics was now seeking to penetrate the
US and European markets and was hopeful of
getting US Food and Drug Administration approval
this year, Mr Maxwell said.
He said that Global Kinetics also was looking to
expand the device’s functions. “We think the way
things are progressing more and more medical data
collection will occur from wrist-worn sensors or
sensors worn on the body, and they will
communicate with each other. More and more data
will be connected and there will be platforms that
evolve to interpret the data over time.”
From: The Australian May 2014
Having more precise data from the wristband
would see patients receive the appropriate
drugs at the right time.
“We believe that the main focus that clinicians
are interested to know about is what’s
happening with the patient’s bradykinesia and
dyskinesia and the fluctuations between those
two states,” Mr Maxwell said. “You can most
likely use oral therapies for longer without
having to move to the more advanced
therapies for Parkinson’s which includes more
invasive treatments, such as deep brain
Stimulation”.
“You can also make a decision about how
people are progressing with their symptoms
and when is the appropriate time for them to be
moving to an advanced therapy,” Mr Maxwell
said.
Global Kinetics Managing Director, Andrew Maxwell wears a
Parkinson’s Kinetigraph, a wristband that monitors
Parkinson’s disease.
Picture: David Geraghty Source: News Limited
Tips for people with Parkinson’s Disease
Page 11
Advanced Directives - A say in your future life decisions
Although people may not like to think about it, there could be times in life when they are unable to
make a decision or properly communicate their wishes about how they would like to be cared for or
treated. It could be for a number of reasons including an accident or mental health episode, or an
illness or injury.
If this happened to you, how would you want decisions to be made for you about your ongoing
health care, living arrangements or other personal matters? Who would you want to make these
decisions for you?
The new Advance Care Directive is an important step forward in planning for health care that came
into effect on 1 July 2014. It allows you to:

write down your wishes, preferences and instructions for your future health care, end of life,
living arrangements and personal matters; and/or

appoint one or more Substitute Decision-Makers to make these decisions on your behalf if
you are unable to make them for yourself.
Having an Advance Care Directive can make it easier for others to know and act upon your wishes
if they have to make decisions for you. It can also give you peace of mind that your wishes will be
known and be respected if you cannot make these decisions yourself.
For more information, or a step by step guide to help you complete and print your own Advance
Care Directive Form, visit www.advancecaredirectives.sa.gov.au
Constipation and Parkinson’s
Constipation is a common problem for many people with Parkinson’s, and refers to the
infrequent passage of hard, dry bowel motions that are difficult to pass. Normal bowel
motions are soft formed, easy to pass, and you should feel like you have completely emptied
your bowel. Frequency varies from 3 times per day to 3 times per week.
Constipation can be a particular problem for people with Parkinson’s because:
 muscles of the bowel can be affected, altering how food moves through the bowel
 medication used to treat Parkinson’s can slow down the bowel
 chewing and swallowing difficulties may affect the ability to consume an adequate diet
and fluid intake
 muscles used for movement and exercise can be affected; decreased exercise levels
can affect bowel activity
To prevent constipation
 Eat Well: a healthy diet rich in dietary fibre
 Drink Well: 1.5 – 2 litres (6-8 glasses) of fluid daily (unless advised otherwise by your
doctor). Water is the best drink.
 Exercise regularly: Aim for at least 30 minutes most days
 Practice good toilet habits: Go to the toilet when you get the urge to use your bowels,
and take the time to completely empty your bowels.
For more information
Speak to your doctor or contact the National Continence Helpline. The free Helpline (1800 33
00 66) is staffed 8am-8pm Monday to Friday and provides advice, referrals, and resources
about bladder and bowel health. More information can be found at continence.org.au
The South Australian Continence Resource Centre (CRC) is a state-wide information and
advisory service, staffed by a continence nurse advisor who is also available to provide
information on bladder and bowel problems. For more information, phone (08) 8266 5260 or
email [email protected]
Groups and Seminars
Page 12
Parkinson’s Awareness Month in September
A major activity for Parkinson’s Awareness Month
was the Expanding Horizons through Art Exhibition.
Funded by a Grant for Seniors, the project brought in
resident artists to work with the Brushlines Art Group
throughout the year to teach new skills and
techniques. This program culminated in the
Exhibition, which was held at the Adelaide City Library
during September.
This Exhibition showcased over 80 artworks from 22
people living with Parkinson’s from around the state.
This wonderful display of a diverse range of artworks
was launched by Stephen Yarwood, the Lord Mayor
of Adelaide and has been appreciated by the many
people who use this exciting new Library space and
helped to raise community awareness of how to live
actively with a movement disorder.
During the Exhibition, a Come ‘n Try Art workshop
was held in the Library for 10 people with Parkinson’s.
The Group has expanded its repertoire under the
guidance of local artist, Helen Favretto, who
conducted the workshop and has been mentoring the
group throughout the year, as well as the inspiring
input of clay artists Penny Mortimer and Damasque
Wells. For photos of this event see page 19 or go to
www.flickr.com/photos/54370246@N03/
sets/72157647328696915/
Photography Group
The Parkinson’s SA Photography Group has now had
a couple of meetings and members have enjoyed
sharing the knowledge and expertise gathered in the
group. Last month Mark Richards, an experienced
photographer from Murray Bridge talked about High
Dynamic Range Photography. The group is preparing
for the In Focus Exhibition of their photographic works
to be held early next year.
FOCUS Photograpy Exhibition
12 January – 12 February 2015
Bringing the important things in life into focus
Showcasing the photographic works of people living
with Parkinson’s and
other movement disorders throughout the State
City of West Torrens Auditorium Gallery
165 Sir Donald Bradman Drive, Hilton
Call for photographic works
If you would like to contribute your photographs
(preferably framed) to this exhibition or would like
more information, contact Anne on 8357 8909
Farewells and Welcomes to the Groups
Melissa Smith from Country CarersSA has
taken on the leadership of the Clare (Lower
North) Taking over from Denisia Pudney.
Melissa’s and Denisia’s support for people
with Parkinson’s and their family members
in the Lower North is very much
appreciated.
Country visits
In October Stevie and Anne visited the
Riverland Parkinson’s group in Berri, calling
into the Murray Bridge Group en route, with
Stevie also presenting a session for staff at
the Loxton Aged Care facility on the way.
This was followed by a trip to the Eyre Peninsula at the end of October.
Understanding Parkinson’s Community
Information seminars were presented in Port
Lincoln and Cleve, and training provided for
health professionals at the Port Lincoln
Health Service, Matthew Flinders Home,
Eastern Eyre Health and Aged Care and
Uringa Hostel in Tumby Bay. A highlight
was a visit to the Tumby Bay Parkinson’s
Support Group.
Local health professionals Wendy Pearce,
Caitlyn Parker, Natasha Clark and Group
Leader, Oakley Dyer, generously assisted
with arrangements for and promotion of the
visit.
New Support Group at Largs Bay
The Philip Kennedy Rehabilitation Centre
is currently running a 12 week ‘Staying
Healthy with Parkinson’s’ education and
exercise group. 14 participants and their
carers have enjoyed learning about
strategies and techniques to assist them
with their various symptoms, as well as
participating in circuit style exercises each
week. The group is run by an Occupational
Therapist and Rehabilitation Assistant, and
also includes presentations by guest
speakers. Gloria, a group participant
reports that she benefits from coming to
the group as she is able to learn from
others who are in a similar situation to
herself. For information on future groups,
please contact the Philip Kennedy
Rehabilitation Centre on 82422985.
Groups and Seminars
Page 13
Understanding Deep Brain Stimulation Surgery Seminar
On 22 September, over 60 people attended a seminar on Deep Brain
Stimulation surgery, at Fullarton Park Community Centre. Neurologist,
Associate Professor Tom Kimber and Neurosurgeon, Dr Andrew Zacest
together described the process of Deep Brain Stimulation (DBS) surgery
and highlighted the latest advances in this treatment for Parkinson’s and
other movement disorders.
Upcoming Seminars
A sheet detailing all events for
November is included in this
newsletter
In addition, the
Learn Now, Live Well Seminar
on 1 December will be
Speaking from experience
a panel of people
living with Parkinson’s
Parkview Room, Fullarton Park
Community Centre, 411 Fullarton
Road, Fullarton
Helen Jackson and Valmai Hankel attended the seminar, pictured here with
Dr Tom Kimber (left ) and Dr Andrew Zacest.
Those interested in finding out more about the personal experiences of
people who have undergone DBS are invited to attend the Deep Brain
Stimulation Surgery Support Group held on the first Monday of each
month from 10.00am – 12.00pm at the Parkinson’s SA Office.
Dance for Parkinson’s coming to South Australia
Erica Rose Jeffrey dance teacher and Program Manager for Dance for Parkinson’s Australia, recently
conducted an intensive weekend introductory training workshop on the Dance for PD® program,
initiated by Parkinson’s SA. Ten dance instructors and eight movement practitioners attended and were
inspired, challenged and stimulated by what they learnt. As part of her visit, Erica led two Dance for PD®
community classes and over 40 people with Parkinson’s and their family members participated. The trainee
teachers/assistants co-participating in the Sunday class universally regarded this as the highlight of their
weekend; many were deeply moved and uplifted by what they observed. Comments from the Parkinson
community emphasized the fun nature of the experience: “a lovely social event”, “an exploration of
movement, stretching and concentration”, “lots of laughs”, “invigorating”, “inspiring music”, ”wonderful free
expression”, ”welcoming”, “creative”, “graceful” and “accepting”. One person reported, “for an hour I forgot I
had Parkinson’s”.
This exciting, innovative dance program, which originated in New York at the Mark Morris Dance Center in
2001, integrates movement from contemporary, ballet, tap, folk and social dancing, and choreographic
repertoire to engage participants’ minds and bodies. Seated and standing moves are given. No previous
knowledge/skills are assumed, yet even the accomplished dancers can feel extended. What results is a
joyous, social environment for artistic exploration: an authentic dance
experience. Most other
Australian states offer these classes, but this is a first for SA.
Parkinson’s SA plans to pilot Dance for PD® classes over coming
months and spread the word in the community about the benefits of
the program for people with Parkinson’s and their family members. If
you are interested in joining one of these classes please contact PSA
on 8357 8909.
For more information about this program go to
www.danceforparkinsonsaustralia.org
Page 14
Annual General Meeting
Parkinson’s SA 2014 Annual General Meeting
The President, Treasurer and CEO reported on a highly successful year in all areas: service
expansion, increased revenue from grants and donations and significant achievements on the national
front. The Parkinson’s SA AGM was held on Sunday 2 November at the Sporting Car Club of SA. The
following people were re elected as Committee Members: Alison Ballantyne, Barbara Celmer, Paul
Davies, Tony Harris, Helena Kyriazopoulos, Geoff McKinnon, Miriam Whitford and Rob Wilcox. Grant
Males retired as Treasurer and his substantial contribution to the Committee over the last two years
was acknowledged with thanks. Steve Whitehouse has been co opted and will now take on the role of
Treasurer. Lindsay White has decided to stand down and his generous contribution was also noted.
John Power was re elected as
President and Paul Davies will
continue in his valuable role as
Parkinson’s SA Representative
on the Parkinson’s Australia
Board.
Pictured at the AGM: Ann and Steve Whitehouse, Di and Ian Biddle and Tony Harris
Parkinson’s SA is indebted to the work of the Committee of
Management and the hours that Members contribute each year to
ensure that all governance and financial accountability is met.
Guest Speaker at the AGM was John Stockwell, who gave an inspiring
and entertaining account of his epic fundraising motorcycle ride around
Australia earlier this year. John’s Ride brought him into contact with
people living with Parkinson’s all around Australia and has to date raised
over $33,000.
Full Copies of the Annual Reports and Audited Financial Statements for
2013-14 are available from the Parkinson’s office.
John Stockwell
Take 9 Movie Cards
Supporting PSA, the great value Take 9 Movie Cards
are ideal for movie lovers and
are available for purchase from the Parkinson’s office
With savings of over $200 and priced at only $20, they make great gifts.
The Take 9 Movie Cards are generously sponsored by
Channel 9 Telethon, Wallis Cinemas and Robern Menz
Parkinson’s Australia National Conference
Page 15
The Parkinson’s Australia National Conference will be held in Adelaide next year providing
an exciting opportunity for people affected by Parkinson’s, health professionals, specialists
and researchers to gather, share and learn, and demonstrate that we are all In This
Together. An exciting program including international keynote speakers, Dr Caroline Tanner
from the University of California and Dr Roger Barker from Cambridge University will join
Australian experts to talk on the latest in research and treatments. The Conference will also
showcase activities and programs that are beneficial to people living with Parkinson’s and
other movement disorders, including the latest in exercise, the Arts and the use of
technology. Registration is now open on the Conference Website
http://www.aomevents.com/ParkinsonsAustraliaNationalConference
Printed registration forms will be available mid November and will be mailed to all
members of PSA or be available in the office
Hosts wanted
Papers and presentations are sought and the
Call for Abstracts can be found on the website.
It is hoped to have as many people with
Parkinson’s and their family members as
possible attend the Conference next year. In
order to cut down costs for those who are
travelling from the country or from interstate,
the call is going out for local people who
would be willing to host visitors in their homes.
This would be a great way of welcoming
people to Adelaide and forging new
friendships. If you are interested in putting
your name down to be a host in this way or
would like to learn more about the idea,
please phone or email the Office.
Volunteers wanted
The success of any great Conference is due
to the wonderful volunteers who are willing to
give up their time to assist before and during
the Conference proceedings. There will be
lots to do getting Conference materials t
together, welcoming people at the Convention
Centre, helping with registration, answering
questions, looking after the Quiet Room and
generally being helpful. Interested? Ring or
email the Office to be sent more details.
Assistance to attend the Conference—Julia Farr Trust—General Purpose Distribution Fund
This fund is available to assist financially disadvantaged people living with disability to access items
that will improve their quality of life. Grants are up to $3000 per applicant within a financial year and
may be allocated for the following purposes:

Minor essential items of personal need (where a person is assessed to be financially unable to
acquire such items) or

Services of a temporary nature when other funding is not available or

Activities that enhance quality of life.
Information is on their website http://www.purpleorange.org.au/grants/julia-farr-trust-funds/
Christmas Closing Times
The Parkinson’s SA Office will be closed from 24 December
and reopen on Monday 5 January
Page 16
Page 16
Library News
Parkinson’s treatment: 10 secrets to a
happier life by Michael S Okun, MD, 2013
Treasures in the darkness : extending the early
stage of Lewy Body Disease, Alzheimer’s, and
Parkinson’s disease by Pat Snyder, 2012
This interesting and engaging work of less
than 100 pages is written by a world
authority on Parkinson’s disease and
presented in language that is easy to
understand.
Firstly, Dr Okun explains what Parkinson’s
disease is, and how it differs from other
neurological diseases.
For a person with Parkinson’s to live a
happier or better life they are encouraged to
ask questions, look at options and therapies
and ways that will help them to manage
their disease.
Information about exciting medical research
on Parkinson’s Disease that involves work
on environmental risk factors, exploratory
trials in neuro-protection, combining DBS
with other therapies to alleviate symptoms
such as depression, developing an electric
biomarker and others.
The importance of exercise and how it
helps with brain function and management
of PD is also featured. There is a chapter
on the side effects of addiction like
behaviours for some people who take
dopamine agonists. The author also talks
about the problems associated with non
motor symptoms such as depression,
anxiety, sleep problems and others.
Even with Dr Okun’s expertise and
knowledge, the spirit of his humanity shines
through by the empathy shown to his
patients and their families. Trying to embed
hope in patient-centred care, Dr Okun offers
realistic optimism and positivism. “I believe
it all comes down to developing your core
values and growing your faith. If you develop your core, you will be working with the
seed that can grow hope.”
Translated into 20 languages it makes a big
statement. Highly recommended.
**************************************************
Written from the perspective of a caregiver, this
story could apply to anyone whose partner
received the diagnosis of a neurological illness
where the outlook appeared bleak and hopeless.
Because of the nature of Lewy Body Disease and
the difficulty in getting the correct diagnosis, it took
up to 12 neurologist visits before it was finally
confirmed. This took its toll on Pat, the wife and the
family. However, it also started a journey of self
discovery and personal growth for all members of
the family and especially Pat.
Pat bares her soul as she shares her story with
poignant honesty. Life’s adversity brought conflict
in relationships but it also became a time of
reflection, learning, resolution as important
changes were being addressed. With the help of
anunderstanding neurologist, they worked through
their issues.
Most importantly. John, the person with LBD was
able to experience some joy in his life instead of
feeling that life had lost all meaning.
Learning to live in the present moment and
understanding the diversity of human expression
helped to make their lives a little happier.
All Books are reviewed by Anita Wymer,
Library Volunteer
**********************************************************
So I’ve got Parkinson’s Disease: an account by
Terry Rummins, 2012
This book is no ordinary narrative of a person with
Parkinson’s Disease but interspersed with very
helpful information about managing the condition
that the author, a young onset person with PD has
learned along the way. Well written, it aims to help
people who are newly diagnosed to understanding
the symptoms and non motor problems that come
with it.
Like most people with Parkinson’s, Terry had her
difficulties and frustrations. In her work as a
psychologist, Terry found innovative ways to
manage difficulties such her small handwriting, soft
voice and medication.
Not only is Terry’s writing very inspiring and full of
wisdom, but she articulates an astute observation
of her worsening condition that may be of interest
to health professionals.
There is some practical advice for dealing with
everyday living such as stress, sleep and
communication as well as helping others to gain an
understanding of what it means to have
Parkinson’s Disease.
Her upbeat quote “When life presents you with a
brick wall, use the bricks and build something new”
really expresses Terry’s positive attitude.
A very readable and interesting book.
In Memoriam
Page 17
Parkinson’s SA appreciates the donations
which have
been given by families and friends in memory
Memorial
Donations
of the following people: All donations assist the Association to provide services to people affected by
Parkinson’s SA wishes to acknowledge the donations which have been given by families and friends
Parkinson’s.
in memory of the following people. The thoughtfulness of the families in arranging for donations to be
given to Parkinson’s SA is greatly appreciated
Mrs Violet Anesbury
Ronald Baines
Giuseppina Calabria
Iris Eden
John Edward Funnell
Iris Rosina Hill
Ian Wayne Mangelsdorf
All donations
assist
the Association to provide services to people
Chris
Murphy
affected by Parkinson’s.
Marilyn Pudney
Shirley Mary Robinson
Thomas (Tommy) Somerville
Jennifer Wendy White
Benardino Bagnara
Frank Brooke
Mr Paolo Caporaletti
Joan Evans
Leslie Richard Griffin
Margaret Jean Hill
Kathleen McGarry
Roslyn Otway
Colin Bruce Ramsey
Dr Kenneth Simpson
Thomas Tanner
PSA also benefits from those who general donations, some on a regular basis, and sincerely
appreciates this support..
Although we are unable to list all donors, your support is gratefully received.
Farewell
Whilst we acknowledge the great sadness of the loss of all those affected
by Parkinson’s whose names appear above, we wish to specially
remember two individuals who gave generously of their time and energy to
represent and support others with Parkinson’s.
Ian Mangelsdorf was a supporter and a giver in every way. For more than
10 years he was part of the group who has assisted with the
packaging of the newsletter each quarter. In more recent years he took on
the leadership of the Onkaparinga Support Group
was the
facilitator of the Noarlunga Exercise Group. Ian’s readiness to help and his
droll sense of humour will be missed by all. Parkinson’s SA
acknowledges Ian’s wife, June, who has also been a tremendous
supporter alongside Ian.
Jenny White was a vibrant and giving person and an ardent advocate for
the needs of people affected by Parkinson’s. Her paper “Parkinson’s—It’s
Just Not Sexy Enough” won the award for best paper given at the 2012
Parkinson’s Australia National Conference. She also spoke at the High
Tea this year, raising awareness and throwing out a call to action. Last
year she was interviewed for television to demonstrate support for the
Parkinson’s Nurse position, Her advocacy on this issue played a
significant role in the retention of the PD Nurse position at Flinders
Medical Centre and in the commitment of both major parties to fund
additional Parkinson’s Nurse positions in SA. Alongside her husband,
Regular Monthly Giving
Lindsay, she shared the role of Group Leader of the Brighton Support
Would you consider making a small monthly donation that routinely came out of your bank account? Giving in this
and contributed
tohence
the Conference
Planning
way helps Parkinson’s SA to Group
plan its income
streams and
its services and
support Group.
for people affected by
Parkinson’s.
Our thoughts are with June and Lindsay at this very sad time.
For more information or to set up your monthly donation please phone the office on 8357 8909.
Page 18
Page 18
Parkinson’s SA Groups
GENERAL GROUPS
MOUNT GAMBIER Boandik
Contact: Wendy Merrett 08 8725 7377
ADELAIDE
MURRAY BRIDGE Resthaven
Contact: Caroline Tenny 08 8532 1537
Contact: Pat Jennings 0408 808 310
BAROSSA
Contact: Margaret Russell 08 8566 2896
NORTH EASTERN
Contact: Paula-Jean Hayes 8357 8909
BRIGHTON
Contact: Rikki Howard 8337 3747
ONKAPARINGA
Contact: Tom Trottman 8322 5145
BURNSIDE
Contact: Sharne West 8357 8909
PORT AUGUSTA
Contact: Margaret Collins 8642 5296
CHELTENHAM
Contact: Warren Martin 8258 2667
PORT PIRIE
Contact: Alison Kokotis 08 8638 4693
CLARE Country Carers’ SA Lower Nth)
Contact: Melissa Smith 08 8421118
RIVERLAND
Contact: Chad Wissler 0400 327 269
ELIZABETH
Contact: Brenda Smethurst 8284 0388
SALISBURY
Contact: Ian Amey 8262 6942
ENFIELD
Contact: Doug Harrison 0412 245 644
SOUTHERN FLEURIEU
Contact: Ashleigh Hunt 08 8552 0600
FAR WEST
Contact: Cynthia Provis 08 8625 3388
TUMBY BAY
Contact: Oakley Dyer 08 8688 1881
LARGS BAY Southern Cross Care
Contact Courtney Brook 8242 2985
UPPER SOUTH EAST
Contact: Karen Burford 08 8762 8160
EXERCISE GROUPS
SPECIALISED GROUPS
ADELAIDE HILLS
Contact: Simone Krohn 83931833
BRUSHLINES ART GROUP
Contact: Anne Heard 8357 8909
BLACKWOOD Health Centre
Contact Karyn Powell 8278 7444 or 0419 840 484
DEEP BRAIN STIMULATION GROUP
Contact: Dianne Biddle 0428 828 089
FULLARTON ChiBall Gentle Moves
Contact: Monica Hall 0412 114 948
DYSTONIA LUNCH GROUP
Contact: Margot Chiverton 8388 0847
LARGS BAY Southern Cross Care
Contact Courtney Brook 8242 2985
FOCUS ON FAMILY CARERS
Contact: Sharne West 8357 8909
NOARLUNGA
Contact: Robert Lloyd 8386 2761
PARKINSON’S PEDALLERS’ CYCLING GROUP
Contact: Mike Hannan 8278 6069
NORTHFIELD Hampstead Rehabilitation Centre
Contact: Bob Barnard 82221891
PARKINSON’S PLUS LUNCH GROUP
Contact: Anne Heard 8357 8909
PAYNEHAM Life Care Active
Contact: Carol Lewis 8168 7600
PARKINSON’S SA DINNER GROUP
Contact: Sharne West 8357 8909
RESTHAVEN MARION
Meets Wednesdays and Thursdays 10am-12pm
Contact: Michelle Rijken 8296 4042
PHOTOGRAPHY GROUP
Contact: Anne Heard 8357 8909
RESTHAVEN NORTHERN
Contact: Rosalind Wren 8252 6811
RESTHAVEN EASTERN
Contact: Marta Krzystoszek 8337 4371
REYNELLA Life Care Active
Contact: Judith Lowe 8168 7600
WESTERN ECH Seaside Wellness Centre
Contact: Lorien Coff 83583169
SHAKY FAITH MATTERS
Contact: Anne Heard 8357 8909
20’s—50’s GROUP
Contact: Anne Heard 8357 8909
Page 19
Photographs
Adelaide Hills Support Group enjoying Wittunga Gardens
Lois and Peter Bennett (pictured) and other members of the
Murray Bridge Support Group engaging in the Ageing
Murraylands Expo in October.
Expanding Horizons Through Art
Some of the Expanding Horizons artists from back left:
Libby Davies, Richard Rowland, Beth Manoel, Mary Smith
Ros Cassidy, Martin Valentine, with Anne Heard.
Front: Paul Mortal and Barrie Vernon-Roberts
Lord Mayor, Stephen Yarwood, opened the
Expanding Horizons through Art Exhibition at the
City Library
Fundraising Prizewinners for
A Walk in the Park 2014
Highest Individual Female: Dee Reynolds ($5831.10)
Highest Individual Male: Paul Davies ($1002.35)
Hi Sandie Sending this note to you so
I don’tTeam:
forget White
(for theKnights
Tulip Times
L)
Highest
($1091.70)
General Practitioner’s guide to Parkinson’s Disease
Other Great Results:
This online course run through Australian College of Rural and Remote Medicine on their RRMEO site is now fullyMonica
accredited
the RACGPStevie
and ACHallwith
($2333.14)
Ferguson ($830.00)
CRM members for the 2014-16 triennium. Access through:
Barb Spriggs ($1613.20) Miriam Whitford ($820.50)
http://www.parkinsons.org.au/our-services/index.htm or www.rrmeo.com.au/
Oakley Dyer ($800)
Jana Clifford ($1554.00)
parkaus
Janine Emsley
(1058.00)
Christine
Belford ($757.12)
This course is worth 30 ACRRM PRPD/Extended
Skills
points and
40
RACGP QI &CPD Category One points
for the
current
GP triennium
(2014Peter
Mase
($500)
Tony
Sexton ($483.76)
2016)