June 2015 (InTouch newsletter)

touch
VOL 25, ISSUE: 2
APRIL-JUNE 2015
WITH PARKINSON’S SOUTH AUSTRALIA
Brain Repair: the past and the future
Cover story: Brain repair
Inner cover: PSA Quiz night &
International Parkinson’s
Program Award
President’s report &
Student scholarships
2
From the CEO
3
New Staff Introductions
4
Infocus on PSA member:
Grant Good
QANTAS carer discount
NDS Companion
Concession Card
Why be a PSA member?
Explaining Duodopa
5
5
5
6
7
Research: What is Fetal Cell
Transplantation
8
Finding C.A.L.M
9
Dance! with Parkinson’s
in the West
10
Parkinson’s & Nutrition
11
Dr Roger Barker, Professor of Clinical Neurosicence at Cambridge University, and one of the international
keynote speakers at the Parkison’s National Conference writes about some of the past studies using cell
transplants and new trials taking place in this area.
The ability to repair the brain has been an
attractive approach for treating many conditions
ranging from acute injuries such as occurs in
stroke to those which progress more slowly as is
seen in Parkinson’s. In the case of Parkinson’s
the prospect of doing this seems realistic because
it is characterized by the loss of a very specific
population of dopamine nerve cells in the area
of the brain called the substantia nigra which in
turn leads to the loss of the dopaminergic input
to another area of the brain- the striatum.
This causes many of the movement problems in Parkinson’s. We know that if we
give people dopamine drugs these aspects of their condition improve. However
over time these drugs become less effective and produce their own side-effects,
some of which relate to the drugs working on dopamine systems outside the
striatum.
As a result, studies started over 30 years ago explored the possibility of using
dopamine cell transplants, especially as Parkinson’s only becomes obvious to
the doctor when you lose just 250,000 dopamine cells in the substantia nigra. In
other words a number that you could realistically replace with cell transplants.
A number of different cells have been considered for this purpose but the best
ones to date are the developing dopamine cells collected from the human fetal
tissue, although even then results have been inconsistent in part because of
problems in trial design, patient selection, tissue preparation and support of
the tissue once implanted in terms of immunotherapy etc. However, a closer
examination of these trials has enabled us to undertake a new trial with fetal
Getting on with
tissue that we hope will give more consistent results. This will then lead to new
Parkinson’s 13-14
trials with stem cell derived dopamine cells, which should avoid many of the
logistical and ethical problems inherent in using human fetal tissue collected
Library News
15
from terminations of pregnancies.
Support group coordinator
Pat Jennings
12
Incontinence seminar
12
Making Music for Parkinson’s
Review12
In Memoriam
16
PSA Groups Listing
17
Inside Back Cover: Photos from
past events
Back cover: A Walk in the Park
Of these stem cell sources, the ones which look most promising in terms of making
proper nigral dopamine cells are those based on protocols using embryonic stem
cells as well as possibly inducible pluripotent stem cells. These latter cells are
made by taking adult cells such as skin fibroblasts and programming them back
to a stem cell state and then driving them into dopamine cells using protocols
similar to those developed for embryonic stem cells.
Whilst there is great hope that these stem cell derived neurons could work in
Parkinson’s, there is still much that needs to be done before this can be realized
and thought of as a standard treatment for this condition.
CONGRATULATIONS TO THE
PARKINSON’S SA CEO
QUIZ
NIGHT
The committee and staff of Parkinson’s SA congratulate
CEO, Christine Belford, who was awarded the “Dr
Rana International Parkinson’s Community Service
Award” announced by the World Parkinson’s Program.
Christine is a worthy recipient who works tirelessly to
ensure the quality support and services of Parkinson’s
SA is maintained and that the longevity of the
organisation is secure.
She is a daily inspiration to staff, volunteers and
members alike.
When: 27 June 2015, 6-10PM
Goodwood Community Centre
Call us on 83578909 to book
your table now
It’s one of the favourite events on the Parkinson’s
fundraising calendar and this year’s Quiz night should
be no different.
If you have never been to the PSA Quiz Night it’s a
night full of eating, drinking, games and of course
- trivia. Perhaps this is the year that you impress
everyone with your general knowledge!
Remember to mark the 27th of June in your diary and
organise familly and friends to make up your table of
10 people. If you don’t have 10 we can sit you with
some other great people.
There will be a prize for the winning team and for
games throughout the evening. There will also be
raffles and a silent auction.
If you have any donations for prizes or know of
businesses that would like to support the work of
Parkinson’s SA by donating goods or services for the
event please contact the office at the above number.
PARKINSON’S AUSTRALIA
NATIONAL CONFERENCE
27-29 MAY 2015
The program is now available online at:
www.aomevents.com/ParkinsonsAustraliaNationalConference
where you can read the plenaries and concurrent sessions
for each day and to register.
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Parkinson’s SA would like to thank AHASA for their generous grant that has
funded the purchase of a new photocopier. We appreciate your support and
are proud to have you as a community partner.
FROM THE PRESIDENT
PATRON:
His Excellency the Honorable
Hieu Van Le AO
Governor of South Australia
PRESIDENT:
Assoc Prof John Power
TREASURER:
Steve Whitehouse
MANAGEMENT COMMITTEE:
Alison Ballantyne
Barbara Celmer
Paul Davies
Tony Harris
Helena Kyriazopoulos
Geoff McKinnon
Miriam Whitford
Assoc Prof Rob Wilcox
CHIEF EXECUTIVE OFFICER
Christine Belford
AGED CARE PROJECT
OFFICER
Norman Radican
GROUP PROGRAMS
Anne Heard
SUPPORT AND INFORMATION
Stevie Ferguson
Paula-Jean Hayes
Margaret Stevens
COMMUNICATIONS AND
DEVELOPMENT
COORDINATOR
Olivia Nassaris
ADMINISTRATION SERVICES
Isobelle Brett
Judy White
EDITORS
Sandie Clarke
Olivia Nassaris
ADVERTISING
Advertising in this newsletter is
available for suitable products.
Rates for black and white (ext
GST): Full pg $250, Half $130
Quarter $70 Eighth $40 (colour
additional $100)
DISCLAIMER
Parkinson”s SA has made every effort
to ensure that information provided in
this publication is accurate and up to
date at the time of publication, however
we accept no responsibility for any
errors, omissions or inaccuracies in the
content. Information is not intended to
substitute for medical or legal advice
nor is Parkinson’s SA recommending
medical or legal advice. Readers are
advised to seek their own medical and
legal advice as appropriate.
SUPPORT LINE
1800 644 189
There is a level of excitement at PSA with the
build up to the conference. The program is
set and promises to cater to a wide range of
interests and the number of delegates is around
the 300 hundred mark and increasing. I would
encourage all members of PSA to try to attend
the conference and support the great effort the
management committee have put into making
this happen. We have managed to attract many
great International, National and local speakers
from a range of areas relating to Parkinson's.
We have some great news to announce in that our CEO Christine Belford
has been awarded the Dr Rana International Parkinson's Community Service
Award for 2014. Three awards were given out with Christine receiving one
and another going to Professor Roger Barker who is a keynote speaker at our
conference. We are all very proud of Christine and congratulate her on this
outstanding award and the great recognition she has brought to PSA.
We offered the Norman Weir Honours Scholarship again this year and
attracted several applications from young Parkinson's researchers. While all
applications were of a high standard we had two that the research committee
thought were of particularly high merit and deserving of two scholarships for
2015. One scholarship has been offered to Ashleigh Watson for a project
relating to the experience of younger people with Parkinson’s and the other
to Guowen Hu for a project relating to the role of brain inflammation in the
development of Parkinson's. We wish both researchers every success.
PSA has just been audited by the Australian Aged Care Quality Agency
which is a condition of our HACC funding. They have examined all aspects of
governance, management, service provision and finance. The interim report
has put PSA in a good light.
Finally, as part of our transition to a larger organisation the Committee of
Management has instigated a constitutional review to examine our current
constitution and governance structures to strengthen our organisation for the
future.
http://www.steadymouse.com/downloads/
People with tremors may find this link to an application called Steady Mouse
useful. It can be used with any type of mouse: wireless, tracking pad on lap
top, corded etc. The software adjusts to allow for tremor and on the settings
page you can adjust to find the optimum settings for smooth use of the
computer mouse. The app will take a little while to get the setting right for
you. It can be used on Windows computers and it’s free to use.
Feel free to contact [email protected] with feedback.
3
from the CEO
At Parkinson’s SA we always strive to provide the
best service possible. As recipients of Home and
Community Care funding from the federal government,
we are also expected to meet certain standards of
care. We recently underwent a review of our service
provision by the Aged Care Agency, to ensure that we
were meeting the high level required of such funding.
I am pleased to report that although we haven’t yet
received our final report, the initial
report has indicated that we have
successfully met all 18 standards
of care. This is great reassurance
both for the funders and our
clients, that we are doing our job
well.
It is pleasing to be able to report
that a new Parkinson’s Nurse
position in the north has been
advertised and interviewed for.
Funded by SA Health, the Nurse will be located at the
Lyell McEwin Hospital in Elizabeth and will provide
services to patients in that region. We look forward to
sharing the news of the appointment with you a soon
as it is public.
As part of the federally funded National Aged Care
Project, Parkinson’s SA distributed posters to 2677
aged care facilities throughout the whole of Australia
to mark World Parkinson’s Day. The posters carried
a message highlighting the need for people with
Parkinson’s to be given their medications on time, every
time. This key message forms part of all the training
that we regularly provide to health professionals and
needs to be reiterated often. It is hoped that the poster
will also generate more requests for staff training in
these facilities.
As we approach the Parkinson’s Australia National
Conference, I feel a sense of pride in the comprehensive
and broad ranging program that the Parkinson’s
SA Conference Planning Group has developed.
World renowned international speakers will present
alongside our very best local and national researchers
and they and health professionals and people affected
by Parkinson’s will all meet, demonstrating that we are
all in this together. I look forward to seeing as many of
you there as possible and sharing this wonderful event
with you.
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support
of students
Guowen Hu and Ashleigh Watson, both from University
of South Australia, will each receive financial support
after Parkinson’s SA awarded them the winners in this
year’s Norman Weir Scholarship for study in the area
of Parkinson’s at the Honours level.
Guowen is undertaking a Bachelor of Laboratory
Medicine and is looking at the involvement of
inflammation
in
Parkinson’s disease.
Ashleigh is studying
Occupational Therapy
and is exploring the
affects of the condition
on employment in
people with Young
Onset Parkinson’s.
Patrick Faulkner was
awarded the grant in
2013 when he was a
post-graduate student.
He has now gone on to do and his PhD to further the
understanding of the neural mechanisms that underlie
exercise-induced fatigue.
He said “I am currently investigating the neural
mechanisms in healthy young adults and in three
groups of individuals with subtle neural pathology.
One of the groups being investigated exhibit abnormal
dopaminergic function and the information derived from
this group will help us to identify the mechanisms that
contribute to the fatigue experienced by Parkinson’s
disease patients.”
He continued, “Receiving the Norman Weir scholarship
was fantastic, it reaffirmed for me the usefulness of
the research that I was doing and provided me with
the confidence to continue in research. In addition to
this the Norman Weir scholarship has furthered my
understanding of the Parkinson’s community and the
various ways in which I can contribute going into the
future.”
The Selection Committee was so impressed with
the calibre of all of the 2015 applicants that all the
students were invited to attend the Parkinson’s
Australia National Conference.
troductions
Parkinson’s SA welcomes Margie Stevens to the support team. Margie writes:
“I have been a Social Worker for many years with a background in medical social
work and the voluntary sector. I was privileged enough to be appointed to the
support team in February this year, and am thoroughly enjoying my work and the
people I have met.
Outside of work I enjoy running and keeping fit enough to keep up with my 2 young
grand-daughters. I am an active member of a local church and enjoy helping out
around my neighbourhood community.
I am looking forward to building strong and productive relationships with all those
connected to Parkinson’s SA and excited at the opportunity to be part of such a
vibrant and effective support team. Thank you to all those people I have met who
have answered my many questions, graciously shared your stories and made me
feel so welcome.”
Parkinson’s SA is pleased to welcome Olivia Nassaris
as the Communications and Development Coordinator
to our team of staff members.
Olivia comes to the organisation after spending eight
years as the Coordinator of an International Volunteer
Organisation in Rio de Janeiro, Brazil, where she
placed volunteers from all over the world in community
projects mainly based in the many favelas (urban
slums) of Rio.
She returned to Adelaide two years ago for the birth
of her son, Pedro. Prior to living in Brazil she was
the Communications Officer for the NSW Nurses and
Midwives’ Association and spent many years wth the
National Tertiary Education Union.
“I’m excited to be working for such a respected
organisation that produces quality services and support
for people in the community. My aim is to ensure that
the estimated 8000 South Australians diagnosed with
Parkinson’s are aware of our services and the fact that
we are - in this together.”
Parkinson’s SA is pleased to have Katherine Dose
on staff as a Project Officer until June. Katherine is
researching technology and digital apps for people
with Parkinson’s and other movement disorders.
She will be on hand at the booth at the National
Conference to demonstrate and explain to people how
they can use apps to improve their quality of life.
Katherine comes with qualifications in law and
neuroscience and pharmacology.
She also works for the Australian Patient Safety
Foundation and volunteers at the Australian Refugee
Association. In her spare time she enjoys running and
triathlons.
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focus: PSA member Grant Good
Most of us are environmentally aware, enjoy nature and
want to do what we can keep this planet healthy. Grant
Good has not only done his best to do this, but as a
Primary School Teacher, he has also helped to impart
another generation of children with his enthusiasm.
Grant began his love of trees back in the 1950’s when
as a grade 4 schoolboy, he went on an organised tree
planting expedition at West Terrace
Cemetery with the Sturt street Primary
School. Little did he know how many
thousands of native trees he was to
personally propagate and plant in his
life ahead.
As a volunteer member of the CFS
for many years. Grant saw the
devastation in the aftermath of the Ash
Wednesday Bushfire in 1983. Grant
was instrumental in the regeneration
of Kyeema Conservation Park, next
to Kuitpo Forest about 40Km south
of Adelaide. He harnessed the efforts
of hundreds of South Australian
schoolchildren in planting what is now known as The
Children’s Forest’ and this title was officially recognised
and named by Dr Don Hopgood in 1985.
Grant’s work didn’t stop there. He then organised
The Southern kids for Urban Forest which involved 8
schools with 100 children from each school planting
While Parkinson’s has affected his ability to follow
his passion for trees and the bush,
Grant has chosen to focus on what
is can do to continue as an active
environmentalist. For example, he now
wears shin guards fastened around
his lower legs with Velcro straps under
compression socks, to protect himself
from knocks and bumps that could
cause him damage while walking in
the bush, and uses trekking poles to
help his stability and gait.
Unfortunately the actual tree planting
is beyond his ability, but he now
propagates, weeds, waters and tends
the seedlings, until they are passed on
to others for the planting in the ground.
Grant is helped and supported in his work by wife
Trudy, not only in his love of nature but also as a carer
as he lives with Parkinson’s Disease
Fare Reductions for Carers on
Domestic Flights
COMPANION CARD IN
SOUTH AUSTRALIA
Good news for people who require a carer to travel
with them!
The Companion Card is a card issued to people with
permanent disability who require support to participate
in community and leisure activities, Cardholders may
present their card when booking or purchasing tickets
at participating venues and, in return for paying for their
own ticket, will be given a ticket for their companion at
no charge. Currently there are over 5000 cardholders
in South Australia.
For Qantas domestic travel within Australia, customers
who require a carer to travel with them are eligible for
a reduced fare for both themselves and their carer,
provided that the customer holds a Carer Concession
photographic identification card issued by the National
Information Communication Awareness Network
(NICAN).
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10,000 trees, and led groups of parents and children
to regenerate areas after other bushfires in South
Australia, including one in Tumby Bay. As part of
his science curriculum, he promoted the building of
a nursery/propagation area in primary schools he
worked in and the building of bird and bat boxes.
NICAN aims to create active and dynamic national
links between people, places and resources that
improve access to recreation experiences for people
with disabilities and their communities.
The Companion Card program continues to grow
with more than 300 affiliates in South Australia to
date, such as the Adelaide Aquatic Centre, which
has just completed significant renovations to improve
accessibility to its facilities including a lifter into one
pool as well as a ramp into the main swimming pool.
Email: [email protected]
Free call:1800 806 769
Phone:(02) 6241 1220
Information regarding the card application
process is available at
www.sa.companioncard.asn.au/publications.htm
Why be a Parkinson’s SA
member?
With this newsletter is a Parkinson’s SA membership renewal form. But why
be a member? Membership is important on so many levels.
It ensures that members, their families, carers and friends who enjoy the
support and services that PSA has to offer are also helping, in part, to
guarantee the financial security and future of the organisation. Members also
have voting rights and therefore contribute to the decision making body of the
organisation.
When Parkinson’s SA and the federal body, Parkinson’s Australia, are lobbying
at a State or Federal level we are able to confidently quote how many people
are committed to putting Parkinson’s issues on the government agenda.
Whilst arguing for things like better care services, more Parkinson’s nurses
and government funding for support services and investment in research the
more people we represent the stronger is our collective voice. Just $30 a year
can contriubte to so many things.
When you belong to Parkinson’s SA you join a group of people who know what
you are going through, who will lend support, a listening ear, accept you as
you are, who don’t judge and help with information when you need it.
Parkinson’s SA also works towards reaching out to those people in the
community with or affected by Parkinson’s who either don’t know about
Parkinson’s SA or haven’t made contact with us. We raise awareness,
bringing information to more people and information leads to acceptance and
understanding.
As a member you receive this quarterly magazine, In Touch, filled with articles
of interest to those with Parkinson’s, advanced notice of upcoming events,
reports on those events we have held and support group information.
Being part of the Parkinson’s community, increasing your social circle,
activities, interests and going to events with like-minded people are all reasons
to be involved with PSA.
Membership is so important and not only exclusively to people with Parkinson’s
- family members, friends, colleagues can all join in support of you and in
wider support of the Parkinson’s community.
If you require more membership forms for family and friends please don’t
hesitate to call the office on 8357 8909 and we can have them posted out.
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Research: Are you living with young onset Parkinson’s?
Volunteers are sought to participate in an Honours Research Project being conducted out of the Occupational
Therapy School at the University of South Australia. People living with Younger Onset Parkinson’s are
required for the study.
There are a number of studies that have investigated medical treatment and drug therapy, with very little
exploring Young Onset Parkinson’s and the impact it can cause on one’s life.
This study will further broaden the knowledge on what it is like living with Young Onset Parkinson’s and how
Young Onset Parkinson’s impacts on occupational engagement.
Who can participate? Individuals who have been diagnosed for at least one year and who were diagnosed prior to their 50th birthday
What is involved?
2 x 1 hour interviews will be needed to gain an understanding of current occupations, their meaning and how these occupations have changed as a result of early diagnosis. The interviews will be conducted in a location convenient to the participant.
Who is involved? Ashleigh Watson (Occupational Therapy Honours Student) together with Dr. Mandy Stanley (PhD) and Alison Ballantyne (Master in Educational Administration, RN).
If you are interested in participating in this study or would like further information, please contact Ashleigh
Watson, Researcher, Email: [email protected] Ph. 0438 463 883
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Parkinson’s SA Members mention this advertisement receive 20% OFF any treatment.
Not valid with any other offer. One redemption per client only.
Offer ends June 30 2015.
Research
What Is Fetal Cell Transplantation?
How Could Stem Cells Help People With Parkinson's?
What Kinds of Genetic Research Is Being Done?
Research in Parkinson's disease has made remarkable
progress. There is very real hope that the causes,
whether genetic or environmental, will be identified and
the precise effects of these causes on brain function
will be understood.
Researchers continue developing new treatments for
Parkinson's disease, treatments that give real hope for
people suffering with the disease. Some treatments
currently being studied involve fetal cell transplantation,
the use of stem cells, and gene therapy.
What Is Fetal Cell Transplantation?
Fetal cell transplantation
is a procedure in which
fetal cells are implanted
into the brains of people
with Parkinson's disease
to replace the dopamineproducing cells in the
substantia nigra. Although
promising, this area of
research is one of the
most controversial.
Some studies have found that fetal cell transplantation
caused an increase in severe involuntary movements
(dyskinesia) due to too much dopamine in the brain.
There are also moral and ethical objections to the use
of fetal cell implants. As a result, other methods of
treatment are being explored.
How Could Stem Cells Help People With Parkinson's?
Stem cells are the parent cells of all tissues in the body.
This means they can turn in to any type of cell. The hope
is that they will eventually be able to make these cells
into specific types of cells, like dopamine-producing
neurons, that can be used to treat Parkinson's disease.
However, there are concerns that patients may have
the same risk of increased involuntary movements
as those who undergo fetal cell transplantation. And,
like fetal cell transplantation, stem cell therapy is
surrounded by moral and ethical controversy.
What Kinds of Genetic Research Is Being Done?
Researchers are investigating genes that code proteins
responsible for producing dopamine. By increasing
the amount of dopamine in the brain, Parkinson's
symptoms can be minimized if not prevented.
What other treatments are being researched?
Drug treatments
Researchers are investigating drugs that block the
action of glutamate, an
amino acid that destroys
nerve cells, as well as
the role of the antioxidant
coenzyme
Q-10
in
slowing the progression
of Parkinson's disease.
Neural growth factor
Preliminary studies have
shown that neural growth factor (a chemical that
stimulates nerves to grow) revives the dormant cells
needed to produce dopamine, dramatically improving
symptoms.
Deep brain stimulation
Research is underway to better understand how
deep brain stimulation works in Parkinson's disease.
Researchers are also studying improved ways of
stimulating the brain.
WebMD Medical Reference Sources:
ClinicalTrials.gov: “Open Studies: Parkinson Disease.”
Parkinson’s Disease Foundation: “Gene Therapy for Advanced Parkinson’s
Shows Promise.”
Parkinson’s Disease Foundation: “New Hope for Parkinson’s Stem Cell
Therapy.”
NIH Research Portfolio: “Parkinson’s Disease.”
Reviewed by Neil Lava, MD on October 11, 2014
© 2014 WebMD, LLC. All rights reserved.
9
Finding
C.A.L.M.
Would you like to look at strategies to achieve more
balance and bring calm into your life?
Would you like to explore ways to make the most of
every day?
Parkinson’s SA is offering an opportunity to meet
in a small facilitated counselling group with others
diagnosed with Parkinson’s or another movement
disorder, who are seeking some new, helpful
perspectives on emotional and physical wellbeing.
The sessions involve sharing ideas, exploring values
and looking at ways to honour these in everyday life
in a confidential, non-judgemental, compassionate
space.
CARING AND CONTINENCE
Let’s Talk about you
The Continence Foundation and Parkinson’s SA
invite you to a free information session and morning
tea for people with Parkinson’s and other movement
disorders and their family members:
Friday 26 June, 10.30am -12.30pm
Fullarton Park Community Centre
411 Fullarton Road, Fullarton
The seminar will cover:
•
Types of incontinence
•
Healthy bladder and bowel habits
•
Common bladder and bowel problems for those with Parkinson’s and other movement disorders
To book contact Parkinson’s SA on 8357 8909.
Through Mindfulness strategies you will learn ways of
“living in the moment” to manage stress and restore
calm. The process is one of letting go of struggle to act
with integrity. If you want to better manage any of your
painful thoughts, feelings, fears and worries, then this
course could be for you.
Finding Calm will run for 4 Monday mornings from
10.30am-12.30pm at Parkinsons SA, commencing
June 15 and finishing on July 6, 2015.
Numbers are strictly limited, so register your name to
reserve your place. For more information call PJ on
8357 8909.
Caring
Acceptance
Letting Go
Mindfulness
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Making Music for Parkinson’s Concert
held on World Parkinson’s Day, April 11
Our sincere thanks to
members of the Second
Wind Ensemble conducted
by David Winnall,
and guest performers
MaryAnn Boettcher and
Ed Kriek who provided
a wonderful afternoon of
entertainment celebrating
World Parkinson’s Day
and supporting the work of
Parkinson’s SA.
Dance! WITH Parkinson’s in the West
Dance classes for people affected by Parkinson’s provide a social environment for participants to
interact with other community members, and to share a positive, stimulating activity together with their
partners. A trial course of the Dance! WITH Parkinson’s program is nearing completion and the feedback has
been overwhelmingly positive. Among the comments from participants:
“enjoyable journey into the unknown.”
“I wouldn’t miss it even if not feeling great. I feel I’m doing
something positive for myself.”
“Uplifting…such fun with some challenges.”
“…frees me up mentally and physically for the rest of the
week.”
“For an hour I forget I have Parkinson’s.”
Dance! WITH Parkinson’s provides an authentic experience of the joys of dance. The classes are structured
to open the mind and the body to music, using the imagination as much as co-ordination. The result can be
inspirational, graceful, uplifting and FUN.
The details of the program are as follows:
When:
May 13 – Come and Try session
The program will continue every Wednesday for 8 weeks at the above times
from 13 May – 1 July (inclusive).
11:00 am – 12.30am (Please arrive from 10.45 am for a prompt 11am start.
The one hour class will be followed by refreshments.)
Venue: Gravity Dance Studio, 50 Sir Donald Bradman Drive, Mile End
Cost: Individuals $7, Couples $10
To register, contact Christine Underdown, the dance instructor on 0403 376 612. For general information
about the dance program contact PJ or Anne at Parkinson’s SA on 8357 8909.
Volunteers Wanted
Do you have a little spare time in your week?
PSA is looking for some willing and able volunteers to help out at Dance! WITH Parkinson’s classes over the
remainder of the year.
The role involves taking payments from participants, setting up tea and coffee, washing up afterwards and
helping with arranging/packing up chairs. This will assist in the running of future dance classes based on the
successs of the pilot program running in St Peter’s since February.
Exact times, days of the week and venues are currently still under consideration, but the classes go for an hour
followed by social time for around 30 mins, once a week. If you might be interested please ring and give your
details to Reception on 8357 8909 in the first instance.
At Eire cafe we aim to provide a friendly yet professional
dining experience where food lovers can enjoy a wellprepared meal that celebrates & supports quality Australian
produce and suppliers.
98 Springbank Road, Clapham
T 7225 9103 www.eirecafe.com
Proud supporters of Parksinson’s SA
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Parkinson’s and Nutrition
Michael Bakker, Pharmacist
Depending on what doctor and/or pharmacist has had
the opportunity to teach you about your medications
you may aware that food can have a large influence
on the results you will receive from some treatments.
It has long been understood that the mainstay of
Parkinson’s therapy (Levodopa [Madopar/Stalevo/
Kinson]) should be had on an empty stomach. Contrary
to popular opinion there is mounting evidence that it is
less to do with the presence of food in general and
more to do with the types of foods being consumed;
protein, fat or carbohydrates/sugars.
The absorption of levodopa is not through a unique
pathway as it competes with many of the nutrients
we get from the breakdown of protein based foods.
Put simply, in the presence of protein
based foods, the absorption of
levodopa is delayed and the amount
that is absorbed also decreases.
The next step involves information
gathering to identify if any wearing off/
delayed on effects is due to a fooddrug interaction. What are the current
foods you eat and how is this different
on the days when symptom control
deteriorates?
As health professionals, we often
instruct people with Parkinson’s
to make sure they are strict with the timing of their
medications because it is the biggest determinant in
how long medication will take to work and how much
relief it will provide. I strongly believe that food –drug
interactions in Parkison’s management are an underidentified cause for the fluctuations in the response
people have to their treatment.
It is very difficult to put specific guides together that will
apply across groups of people on these interactions.
We all have very different meal plans and eating
habits. What I can say is: knowledge is power.
Now that we have the information that drug-food
interactions occur with levodopa we need people with
Parkinson’s and their carers to try and gather data on
when fluctuations occur in response to treatment but
also if there is differences in meals. For example, what
was eaten differently the meal before the symptoms
failed to be treated. Essentially building towards a stable
meal base of regular amounts of protein, regardless of
its form (meat/beans/nuts), we give the best chance of
getting consistent results from medicines.
12
Before making any rapid changes to your diet based
on this please recognise that going in the opposite
direction and changing from lots of protein to none will
lead to a greater increase in the amounts of levodopa
absorbed and likely increase in side effects.
A Home Medicines Review is a interview between you
and a trained pharmacist about how best to use your
medicines and avoid side effects/drug interactions.
The service is completely subsidised by medicare
for eligible patients and works with your doctor/s to
achieve the best outcomes we can for you.
Notes about the Author:
In 2014 Michael was awarded the Inagural Young
Pharmacist of the year by the
Pharmaceutical Society of Australia
SA/NT. The award he received
recognises innovation in practice
amongst young pharmacists to
improve the health of their community
and standards of practice.
Over the last few years Michael has
made an effort to make his expertise
available to Parkinson’s SA and in
mentoring other young pharmacists in
developing their own skills.
He developed a small business that
covers medication reviews in the north of Adelaide
(Gawler region) to deliver high quality health care to
regional areas too.
He said “The highlight for me has certainly been the
Parkinson’s SA volunteering and developing my skills
in this specialised area.”
W
Need Support?
1800 644 189
You are encouraged to use the free, confidential
telephone information and support services provided
by Parkinson’s South Australia.
The Support Line does not provide medical advice
but aims to provide information and support to assist
people to understand and live well with Parkinson’s.
The Support Line is for people with Parkinson’s
disease and any other movement disorder, their
families, carers and friends, teachers, students and
healthcare professionals.
Time out with Adelaide Hill Support Group Coordinator,
Pat Jennings
Pat and Peter Jennings always attended Support Group meetings in their
previous suburb so when they made the move to the Adelaide Hills they asked
Parkinson’s SA to put them in touch with the Support Group in the area.
Not long after they settled in to the new home, and Support Group, the coordinator
was no longer able to carry out the role so Pat put up her hand. She says she has
always been a busy person and likes to be busy.
She said, “We hadn’t been a part of the group for very long as we had only
recently moved to the Hills so I felt awkward putting my hand up - but I thought
I’d try.” It’s that willingness to try that is the most important trait of a volunteer
Support Group Coordinator because as Pat described, she sees her role as a
conduit between people and Parkinson’s SA. “For me, trying to help people get
the information they need is what I believe my role to be.”
She explains the importance of Support Groups to her and her husband. “Peter gets companionship. He gets to
talk man talk with other men in the group. This is important.”
“We also have a group of carers that meets up for a coffee and some time-out. It’s comforting because I don’t
have to explain anything to them. They just know. We can laugh and cry together. It’s anything but quiet when
we fill up a cafe, but it’s my version of quiet time and I know that I’m not alone.”
Pat always encourages people to attend support meetings. Her advice is to go and observe. She doesn’t expect
anyone to speak in they don’t want to. People are free to put in or take out of it whatever it is they want - to listen,
to speak - it’s a personal choice.
Pat believes in the importance of being a member of Parkinson’s SA. She said, “it gives you a sense of being
and belonging. It allows me to access helpful information and if there is something I don’t understand I know I
can ask. Doctors are good at explaining the disease and medications but they don’t live with it. Parkinson’s SA
teaches you what you need to know to live with it every day.”
If you would like to attend a Support Group in your area please check the list on page 17 or if you would like to
start a Support Group in your area please contact Anne Heard at PSA on 8357 8909.
MyAgedCare Website - www.myagedcare.gov.au
The My Aged Care website has been established by the Australian Government to help people navigate the
aged care system. The Gateway is part of the Australian Government's changes to the aged care system
which have been designed to give people more choice, more control and easier access to a full range of aged
care services.
My Aged Care is made up of the website and a national contact centre. Together they aim to provide
information on aged care, whether for yourself, a family member, friend or someone you're caring for. The
contact centre can be phoned on 1800 200 422 8am-8pm on weekdays and 10am-2pm on Saturdays (closed
on Sundays and national public holidays).
Need an interpreter?
If you have a hearing or speech impairment?
If you speak a language other than English you can
phone the Translating and Interpreting Services (TIS)
on 131 450. Alternatively, you can call the National
Contact Centre on 1800 200 422, and they will organise
an interpreter. My Aged Care also includes information
on aged care in other languages.
People who are deaf or who have a hearing or speech
impairment can contact My Aged Care through the
National Relay Service in two easy steps:
1.Visit the National Relay Service website to
choose your preferred access point
or
2. Ask for My Aged Care on 1800 200 422.
13
GETTING ON WITH...
Social Worker Paula-Jean Hayes writes about
her experiences at Parkinson’s SA reflecting on
her time after celebrating one year of working
for the organisation.
April 14 marks my one year anniversary working at
Parkinson’s SA in the client support team- twelve
varied, rewarding and busy months which have flown
by. It’s a good time to reflect on my experiences.
What stands out are my interactions with many people
affected by (or linked to) Parkinson’s in some way those with diagnosis - family members, friends, health
professionals, service providers and fellow staff
members here, and the volumes I have learnt about
the condition and its treatment.
When I tell people where I work and what I do, I often
meet reactions like, “that must be really depressing”
or “how do you cope with it?” If I’m honest, before
I started, I too anticipated these kinds of challenging
feelings.
However, I can sincerely say that the reality has
been vastly different. My job inspires me constantly.
The people I work with amaze me by their honesty,
resilience, courage, ingenuity, determination, diversity,
humanity and flexibility.
Not that I want to minimise or invalidate the very real
suffering and losses endured by people with a chronic
movement disorder diagnoses- and their close friends
and family.
But where I see difficulties, I also witness people
reaching out to one another in supportive relationships.
Where there is grieving, there is also big-heartedness.
I observe self-compassion: a gentleness which can
grow alongside frustrations and pain.
I talk with people who manage uncertainty and
unpredictability with grace and humility. I encounter
people initially overwhelmed by fear, worry and
ignorance, but who over time take steps to learn,
plan, establish constructive habits and create ways
to find calm within their storms. I watch patients
with a disease which often limits bodies and erodes
confidence, transform into dancers where music and
movement lift limbs and spirits. It’s a privilege to work
with such people.
14
I’ve gathered some principles from those with lived
experience which can help people affected by
Parkinson’s get on with their lives. I find they crop up
in discussions with newly diagnosed people and their
carers, but they contain wisdom worth considering or
revisiting at any stage. See if any resonate with you.
Perhaps if they do, you could write out key points and
put somewhere visible at home to remind you daily to
return to some basic truths.
•
Try to stay calm.
•
Take your time to come to terms with the diagnosis.
•
Find a neurologist who you trust to listen to you,
answer your questions, with experience with
movement disorders. It’s ok to change specialists.
•
Be responsible for your own experience of
Parkinson’s. Assess everything. You are the expert
of your own experience. What works for you?
•
Parkinson’s is part of your life, but it is not your life.
Don’t let it define you. You are still you.
•
Tell others about your diagnosis when you feel the
time is right, in terms you feel comfortable with.
•
Seek support only as you wish, eg it can be easier
to relate to people of your own age and stage of
Parkinson’s.
•
Gather information when you are ready and as it is
appropriate. There’s an overload out there which
can be overwhelming and even misleading. Too
much and too little research can be problematic.
•
Remember always that no two people have
Parkinson’s in the same way. That goes for
symptoms,
progression
rates,
medication
effectiveness and personal circumstances.
Comparing yourself with others and projecting
others’ experiences onto your own is unwise and
unhelpful.
...PARKINSON’S
•
Keep exercising. Join a program or take up an
activity if you have let this lapse.
•
Keep working for as long as you can.
•
Get help if you’re often feeling depressed, stressed
or anxious. There ARE things which can be done.
•
See professional medical, legal and financial
advice. Plan for your future.
•
Ask questions. If you don’t understand the answers,
ask again until you do.
•
There may be a settling in period when you first go
on medication, or change medication regimes.
•
Complaining and explaining are not the same;
choose to do the latter.
•
Write down things that bother you, to prompt you to
raise these with appropriate people.
•
Report side effects of medications to your doctor/
neurologist.
•
Always check whether other drugs you take have
any contra-indications with your Parkinson’s
medication- even “natural”/herbal ones.
•
Eat healthily.
•
Focus on what you can do, rather than what
you can’t. If you are constantly struggling with
negative thoughts, seek help from a professional.
The Parkinson’s SA support team are able to talk
through strategies and teach skills which can make
a huge difference.
•
Pace yourself. Take time out to rest.
•
You are NOT alone. Stay in touch with your
family, friends, and those in your community. It
can be tempting to withdraw and hide away, but
interactions are so important. There’s a wonderful
African proverb: “If you want to go fast, go alone. If
you want to go far, go together”
•
Sieze opportunities to try something new. Be
daring enough to sometimes step outside your
comfort zone.
•
Be curious and open. Live life to the full.
•
Hold on to your sense of humour.
•
Keep enjoying the things which give you pleasure
and a sense of purpose. If they become too hard,
be creative about adapting your involvement and
connection.
•
Be kind to yourself. Recognise that there will be
bad days, wrong words, hurtful experiences, poor
choices. Forgive yourself- and others- and gently,
patiently bring yourself back on track.
•
Look at your condition as a reason to reprioritise,
to realise what is most important to you. Act on
these values.
Use the resources of Parkinson’s SA to better
understand and deal with Parkinson’s.
Read from the library/website/information sheets, talk
confidentially to experienced professionals on the
support line, join support groups to meet others in
similar situations.
Attend seminars or short courses we run, get involved
in events, try out activities such as art/dance classes/
exercise groups/choirs, spread the word in your
community about what Parkinson’s is or where to get
help.
There are many ways to add richness, encouragement,
friendship, compassion and understanding in your life.
It’s worth testing what works for you, and where to
turn, at any given time.
Acknowledgement: In writing this article, I’ve borrowed
heavily from an excellent book in our library called
“Positively Parkinson’s” by Ann Andrews.
15
our library
The Parkinson’s SA library is stocked with books relevant to living with, the treatment of, research and the
science of Parkinson’s and other movement disorders. It has a myriad of DVDs for people regarding excercise,
nutricion and other topics. As well as the many useful and non-fiction range there are also various ficitional
and biographical reads. You must be a member of PSA to use the library and our rural and regional members
can borrow and return books by post. Our Library is maintained and all reviews are written by our Librarian,
Anita Wymer.
DBS a patient guide to Deep Brain Stimulation by
Sierra M Farris PA-C and
Monique L Giroux MD, 2013
Written by two experts in the field, this excellent work is
comprehensive and surprisingly easy to understand.
It provides helpful information for the person who
has decided to undergo Deep Brain Stimulation for
Parkinson’s disease, Dystonia or Essential Tremor.
Importantly, it details what one can expect from the
DBS surgery, programming and adjustments of the
hardware device as well as any post operative issues.
All through the book the authors pose questions for
the patient to ask their medical professionals The pros
and cons of this operation are also explained and a
list of “frequently asked questions” is also featured.
Throughout the book there are brief and inspiring
patient stories of their experiences with DBS.
As DBS impacts not only on the patient, special
attention is also given to the care-partner and family
members. Photos of DBS hardware components and
its implantation make it easier to understand than just
words. I recommend this book very highly.
Stuck with it, not in it Redefining Parkinson’s Disease
by Susan Gangsei sponsored by National Parkinson
Foundation Minnesota, 2014
This book is short and easy to read but it contains a
powerful and positive message of how to cope with
initial feelings of despair after being diagnosed with
Pd. Although life has changed, living with this disease
can still be meaningful and rewarding.
In her collection of patients’ experiences, the author
actually justifies the title of this book. Parkinson’s
affects the lives of, not only the patient but also the
caregiver, spouse and family. As change is the only
constant, it certainly starts with the PwP if they want
their life to improve and explore new options.
16
Facing the reality of their situation is a good start
and then focus on how to move forward. This
requires courage. However, in the long term life may
improve at least psychologically in spite of living
with Pd. Learning new things, visiting new places,
volunteering are just some of the ways that can help to
bring meaning to their new life. However, often the PwP
cannot do this alone and this is where support groups
and the Parkinson’s organization play a valuable role to
help and encourage them.
The health professionals whose passion in their work for
the care and welfare of PwP play an integral part and a
chapter in this book is devoted to them.
This ‘upbeat book’ would appeal to newly diagnosed
with Pd and I recommend it highly
A Patient’s Choice Quality at the End of Life / Rural
Health Education Foundation, Aust. Govt. Dept of
Health and Aging, 2011, DVD
Part of the excellent Rural Health series, this DVD
was broadcast on the ABC in 2009. Chaired by ABC
Health Report presenter, Dr Norman Swan opens up a
discussion on the topic of people who are terminally ill
and the planning that needs to be done on their behalf.
This may involve a multi-disciplinary team. For the
caregiver it is important to plan ahead so their loved
one’s wishes are met when the inevitable happens.
Comprised of a panel of experts in their fields: a professor
in palliative and supportive care, specialist palliative
care nurse practitioner, General Practitioner and Cojoint Lecturer, and a Professor of Clinical Ethics, they
give a balanced perspective of the issues that present
for patients with advanced illness where all options were
explored. All that is left, is to provide the best kind of
palliative care for the patient.
Focus on providing quality care and communication
with family and the patient’s wishes are vitally important.
Questions about the problem where the patient has no
family are also dealt with in this book.
The first part is a general discussion by the panel of
the clinical planning process which may of interest to
caregivers or family and the second part gives detailed
case studies that would be useful to a health professional
audience. This DVD is presented mainly in non technical
language that could be understood by most people.
memoriam
Parkinson’s SA wishes to acknowledge the donations which have been given by families and friends 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.
Grammatiki BaslisMarjorie Beinke
Stan BourasRonald Jeff Bur
Pauline Alice DickinsDavid Green
John Forbes HadenMoreen Hansen
Mary HaywoodAngela Jenkins
Dr J S JoseSalvatore Lagana
Sylvia LennonDenis James McCarthy
Antonia MusolinoAnne Teresa O’Connor
Nancy O’ConnorKathleen Talbot Pearce
Malcolm Bruce PomeroyGraham Howard Smith
Brian StandenElizabeth Mabel Wellington
Helen Yvonne Willett
PSA also benefits from those who give general doations, some on a regular basis, and sincerely appreciates
this support. Although we are unable to list all donors, your support is gratefully received.
IS IT TIME TO THINK ABOUT THE FUTURE?
A bequest, no matter the amount, will ensure
that the work of Parkinson’s SA will continue in
the future helping people with Parkison’s and
other movement disorders. Your Last Will and
Testament is your final wishes put into writing
and how you would like your asssets distributed
when you are gone. A legal Will enables ou to
make these decisionss and ensures that your
wishes for your family and other beneficieries are
accomplished. Without a proper Will in place, the
government decides how your estate is distributed.
If you would like to make a charitable bequest
to Parksinson’s SA, it is absolutely necessary for
you to have a legal Will. There are many different
types of bequests you can leave. For a confidential,
informal discussion with absolutely no pressure,
contact Parkinson’s SA today: (08) 8357 8909 or
email [email protected].
We can help make the proccess of leaving a bequest
as simple as possible.
17
Port Pirie
Contact: Alison Kokotis
8638 4693
Resthaven Marion
Contact: Michelle Rijken
8296 4042
Adelaide Hills
Contact: Pat Jennings
0408 808 310
Riverland
Contact: Chad Wissler
0400 327 269
Resthaven Northern
Contact: Rosalind Wren
8252 6811
Barossa
Contact: Margaret Russell
08 8566 2896
Salisbury
Contact: Brenda Smethurst
8284 0388
Resthaven Eastern
Contact: Marta Krzystoszek
8337 4371
Brighton
Contact: Rikki Howard
8337 3747
Southern Fleurieu
Contact: Tori Workman
8552 0600
Burnside
Contact: Anne Heard
8357 8909
Tumby Bay
Contact: Oakley Dyer
8688 1881
Western ECH Seaside
Wellness Centre
Contact: Merilyn Lock
8358 3169
Cheltenham
Contact: Warren Martin
8258 2667
Upper South East
Contact: Karen Burford
8762 8160
Clare Country Carers’ SA
Lower Nth)
Contact: Melissa Smith
8842 1118
Yorke Peninsula Carers’ Link YP
Contact: Jenny Murdoch
8821 2444
SUPPORT & EDUCATION
GROUPS
Eastern Eyre Peninsula Health
Service (Cleve)
Contact: Sandra Rattley
8628 2399
Elizabeth
Contact: Brenda Smethurst
8284 0388
Enfield
Contact: Doug Harrison
0412 245 644
Far West
Contact: Cynthia Provis
08 8625 3388
Mount Gambier Boandik Lodge
Contact: Wendy Merrett
8725 7377
Murray Bridge Resthaven
Contact: Caroline Tenny
8532 1537
North Eastern
Contact: Anne Heard
8357 8909
Onkaparinga
Contact: Tom Trottman
8322 5145
18
Port Augusta
Contact: Margaret Collins
8642 5296
EXERCISE
GROUPS
Adelaide Hills Health Service
Contact: Simone Krohn
8393 1833
Blackwood Recreation Centre
Contact Karyn Powell
8278 7444 or 0419 840 484
Fullarton ChiBall Gentle Moves
Contact: Monica Hall
0412 114 948
Grange Retirement Village
Contact: Stan Miller
0417 856 386
Largs Bay Southern Cross Care
Contact Courtney Brook
8242 2985
Noarlunga
Contact: Robert Lloyd
8386 2761
Northfield Hampstead
Rehabilitation Centre
Contact: Bob Barnard
82221891
Payneham and Reynella
Life Care Active
Contact: Deb Gabrovsek
8168 7600
SPECIALISED
GROUPS
Brushlines Art Group
Contact: Anne Heard
8357 8909
Dance! WITH Parkinson’s
Contact: Paula Jean Hayes
8357 8909
Deep Brain Stimulation Group
Contact: Dianne Biddle
0428 828 089
Dystonia Lunch Group
Contact: Margot Chiverton
8388 0847
Focus on Family Carers’ Group
Contact: Anne Heard
8357 8909
Parkinson’s Pedallers’ Cycling
Group
Contact: Mike Hannan
8278 6069
Parkinson’s Plus Lunch Group
(PSP, MSA, CBD)
Contact: Anne Heard
8357 8909
Parkinson’s SA Dinner Group
Contact: Anne Heard
8357 8909
Photography Group
Contact: Anne Heard
8357 8909
VISIT BY, OUR PATRON,
HIS EXCELLENCY THE
HONOURABLE HIEU VAN
LE AND MRS LE
His Excellency and Mrs Le came to visit Parkinson’s
SA on Tuesday 10 March after accepting the invitation
to be the new Patron of the organisation.
After being welcomed by Christine Belford and John
Power, the Governor and Mrs Le were taken on a
tour of the Parkinson’s SA offices. Both he and Mrs
Le spent the morning chatting with staff, volunteers,
committee and life members.
In his speech the Governor said that he was impressed
by the work of the organisation and he particular
admired the dedication of our volunteers.
Thanks to Eire Cafe and BD Farm Paris Creek for donating
the catering for this special occasion.
CHARITY
EVENT
THE LONGEST
LAMINGTON LUNCH
One hundred Parkinson’s SA supporters and friends
played a part in officially opening of the new Western
wing of the Adelaide Convention Centre when they
attended the Longest Lamington Lunch in March.
Guests were taken aback when they saw 1076 metres
of lamington winding its way down every table and
throughout the foyer. The tables were beautifully
presented in Parkinson’s SA purple thanks to the
lisianthus donated by Adelaide Flower House on Unley
Road.
After enjoying entree and main course everyone was
welcome to enjoy dessert, which of course was all you
could eat lamington, but only after Radio personality
Amanda Blair declared that the Adelaide Convention
Centre had successfully made it into the Guiness Book
of Records.
19
a walk
the park
parkinsonswalk.com.au
Bonython
Park
30 August
REGISTERAT
NOW
WWW.PARKINSONSWALK.COM.AU
REGISTER
WWW.PARKINSONSWALK.COM.AU
A Walk in the Park raises awareness and significant
funds to help in the fight against Parkinson’s disease.
Your participation will help Parkinson’s South
Australia to deliver support programs, services and
advocacy to people affected by Parkinson’s. It will also
enable further education of the health sector about
Parkinson’s and related issues. A Walk in the Park
is the largest event in South Australia for people with
Parkinson’s, their families and supporters and assists
in raising community awareness about this complex
and debilitating condition.
Our walk is a little different from other events. A Walk
in the Park is not about your fitness level or ability - it’s
about doing what you can do, not what you can’t do.
As a result it is an inclusive event for people to spend a
fun day in our beautiful Adelaide parks, enjoy time with
family and friends, to acknowledge the importance
of staying active and to support and fundraise for
Parkinson’s SA.
20
The day will start with a hearty BBQ breakfast and
then sausage sizzle after the event. Invite family and
friends to register and walk with you and remember
that you can even register your dog to participate. You
might even want to pack a picnic and make a day in
the park after the offical activities are over.
When you fill out your registration online you will also
set up an EverydayHero fundraising page so you can
start raising money. These funds will ensure that the
vital services and support that Parkinson’s SA offers
can continue. Your business or workplace can become
a Gold, Silver or Bronze sponsor of the event. If you
would like more information regarding sponsorship,
you would like to register a corporate team of 20
participants or if you can make an in-kind or product
donation for the event please contact Olivia on
8357 8909.
Registrations are open now at:
www.parkinsonswalk.com.au and click on Adelaide