The Community and Professional Liaison committee of the Parkinson's
Association of Western Australia, has the task of raising the level
of PD knowledge and awareness in our state. It's members address:
-the staff at hospitals/nursing homes,
-service clubs,
-any interested community group.
A working party has recently produced a guide for the use of its
members. It was felt that the guide, which covers the subject of PD
in point form, may be of some use to similar groups elsewhere. I am
therefore, on behalf of the committee, sending the list this copy of
the text of the guide (see below).
Should anyone want a copy of the formated version of the guide (Word6
for Windows) I can send it to them as an attachement.
Dennis.
**************************************************
Dennis Greene 48/11
[log in to unmask]
http://members.networx.net.au/~dennisg/
**************************************************
+++++++++++++++++++++++++++++++++++++++++++++++
The Parkinson's Association of Western Australia
Community and Professional Liaison - Guide for Speakers
"Medical content reviewed and approved by:
Dr Peter Panegyres (Neurologist)
Dr Keith Grainger (Neurologist)"
Preface
Please use these outlines as a guide for what to cover.
-Modify the outlines to suit your particular audience and your own
style.
-What we bring is our own experience as a person with PD or as a
carer. Give personal anecdotes.
-We do not pretend to be neurological experts.
-If you or people close to you have had funny experiences with PD
include these stories, if appropriate. Humour goes over well.
-If you have analogies that help you understand things, share these.
Dennis, eg, likens the mind/body message breakdown to an unreliable
overseas phone connection, with distortions and delays.
-Work out whether you are more comfortable with questions as you go
along, or a question time at the end. Remember that audiences differ.
Some ask lots of questions, others don't.
-There are videos you can take along to show if time allows.
-Take handouts that are free, also offer fact sheets and brochures
and books for sale.
-Remember to talk about PAWA. Can use this as a positive note to end
on.
Outline 1 - Suitable for Professional Audiences
In Brief
WHAT IS PD?
1. CNS disease affecting movement and speech.
2. Reason why dopamine producing cells die is not known.
3. The 3 major symptoms......
4. Symptoms show in many ways and the pattern differs for each person
with PD.
TREATMENT FOR PD
1. Stay as active and involved as possible.
2. Make full use of the help different therapies can give
in working towards remaining active and involved.
3. Drug therapy
4. Surgery
PD- EFFECTS ON EVERYDAY LIVING
1. Tremor
2. Rigidity
3. Slowness
4. Combination of rigidity and slowness:-
5. Depression
HANDLING FREEZING EPISODES
The following are some little tricks you can try:-
POSSIBLE COMPLICATIONS FROM LONG TERM MEDICATION
1. "On-Off" effect or sudden fluctuations in performance.
2. Dyskinesias
3. Dystonias
4. Sleep problems
5. Hallucination and delusions
6. Dryness of mouth and eyes
PARKINSON'S ASSOCIATION OF W.A.
Services provided by our Association
Outline 1 - Suitable for Professional Audiences
WHAT IS PD?
1. CNS disease affecting movement and speech. Lack of dopamine caused
by progressive death of dopamine producing cells in an area at the
base of the brain.
Messages being generated, body still capable of carrying out
functions, but lack of dopamine means that messages from the brain
can't get through properly. So, the person with PD has difficulty
initiating or carrying out normal movements.
2. Reason why dopamine producing cells die is not known.
Speculation has centred on the possibility of a combination of
factors, including some genetic predisposition to react negatively to
things in the environment.
Not contagious; Not a straight out hereditary pattern.
3. The 3 major symptoms are
Shakiness (tremor)
Stiffness (rigidity)
Slowness (bradykinesia)
4. Symptoms show in many ways and the pattern differs for each person
with PD.
No one person has every symptom.
Sometimes a person's symptoms may be very obvious and disabling, at
other times hardly noticeable. This may vary from day to day, and at
different times of any one day.
TREATMENT FOR PD
1. Stay as active and involved as possible.
2. Make full use of the help different therapies can give in working
towards remaining active and involved.
-physio,
-OT,
-speech
-dietician
3. Drug therapy
(through your neurologist and GP)
Dopamine replacement drugs
(sinemet & madopar)
Drugs that help the dopamine in the brain to work more effectively
(dopamine agonists eg parlodel, permax, apomorphine)
Drugs that make more dopamine available, by working against enzymes
that destroy dopamine.
(MAO-B inhibitors eg selegiline.)
( COMT inhibitors eg tolcapone.)
Drugs that block that action of the neurotransmitter, acetycholine.
(thus reducing the chemical imbalance between dopamine and
acetycholine.)
(eg artane, cogentin, disipal)
Others
amantadine
(believed to release dopamine from nerve endings in the brain) and
motilium
(used to reduce the nausea often associated with drugs used for
PD).
NOTE
No two people will have exactly the same symptoms and therefore
medication needs vary.
The timing or spacing of medications also varies between different
PWP.
Listen to the PWP and carers. They usually have a very clear
knowledge of their medication and when it is needed.
Some PWP suffer adverse reactions if they do not take their
medication within a few minutes of the due time. They are not being
obsessive or deliberately awkward, only seeking to keep on
functioning.
4. Surgery
Not everyone is suitable for surgical intervention.
Patient selection is a matter for a neurologist.
Surgery is not a cure, nor does it stop the progression of the
disease. There are risks of complications and patients will still
require drug treatment, although perhaps at an adjusted dose.
[The current procedures, done while the patient is conscious and
using a stereotactic frame on the head, are:-
-pallidotomy and thalamotomy - where a tiny lesion is created in a
specific area of the brain
and
-deep brain stimulation - a reversible procedure in which a minute
part of the brain is subject to chronic stimulation from an implanted
electrode.]
PD- EFFECTS ON EVERYDAY LIVING
1. Tremor
-more apparent at rest,
-reduced in active movements or when asleep
-worse in stress situations
-Can be very embarrassing, especially when handling liquid food or
drink, and can cause people to withdraw socially.
-Can also cause problems in some work situations.
2. Rigidity
-reduced facial expression.
("mask-like" face. Muscles used in laughing or smiling do not work as
well. (Others may dismiss the PWP as not interested, unresponsive,
depressed, or even a bit "slow")
-posture problems. (Tend to stoop forward, shoulders hunched)
-pain. (because of muscles tightening and holding parts of the
body in abnormal positions)
-disturbed sleep. (body rigidity leading to stiffness and pain)
-freezing. (getting stuck on the spot while walking)
Please refer to separate sheet on handling freezing.
3. Slowness
-movements slower
-difficulty in initiating movement.
-Reduced arm swing
-Walking may develop into a shuffle, with small, forward pitched
running steps
-Writing typically small and cramped, may be slow, hard to start the
writing action.
4. Combination of rigidity and slowness:-
-Posture problems and poor balance lead to increased risk of falls.
-Constipation and urinary problems (eg frequency)
-Difficulty turning over in bed or rising from a low seat.
-Fine motor movements difficult eg brushing teeth, doing up buttons
or shoe laces.
-Swallowing-difficulty with the several different actions involved in
swallowing; dribbling.
-Speech and communication difficulties.
-Voice may be weak and strained
-Speech tends to fade out
-Words may tumble over one another.
5. Depression
A common problem amongst PWP. However, it is also possible for lack
of responsiveness due to facial masking to be mistaken for
depression.
HANDLING FREEZING EPISODES
-Give the person time, if possible. Try to relax the person and break
the tension with a joke or other pleasant distraction.
-Do not let yourself get frustrated and, above all, do not push or
try to forcibly move the person.
-The following are some little tricks you can try:-
-Place your foot, an up-turned walking stick, or perhaps a
handkerchief in front of the person as something to consciously step
over;
-Use cue cards e.g. "large step" placed at a place where repeated
freezing episodes occur;
-Use a small electric metronome that can be switched on for stepping
in time to the beat;
-Say "GO" loudly, or "left, right, left,......"
-Sing / whistle / clap hands;
-Gently rock the person from side to side.
POSSIBLE COMPLICATIONS FROM LONG TERM MEDICATION
1. "On-Off" effect or sudden fluctuations in performance.
-The "off" times are when the drug somehow becomes ineffective for
the patient; characterised by extreme slowness and difficulty moving.
-When the "on" state returns, the medication becomes effective once
more and the patient regains mobility.
2. Dyskinesias
Involuntary movements caused by high levels of levodopa.
(Superficial similarity to tremor. However dyskinesia:
-involves more writhing or twisting movements,
-occurs only during the "on " periods, and
-is made worse by an increase in dopamine replacement medications
3. Dystonias
-Uncontrollable, sometimes painful, cramping of a muscle group
eg foot or calf muscles. Often indicative of low levodopa levels.
4. Sleep problems
insomnia, vivid dreams and nightmares possible as side-effects of
medications.
5. Hallucination and delusions
Although not common, can be a very worrying side-effect and difficult
to treat. (Some drugs eg anti-cholinergics, are normally avoided with
elderly patients because confusion is a likely side-effect.)
6. Dryness of mouth and eyes
May increase risk of infection.
PARKINSON'S ASSOCIATION of W.A.
Phone: 9381-8699 (city)
1800-644-189 (country)
Make the point that when a person is ready, the Parkinson's
Association is there as a point of contact with others in the
Parkinson's community. Each person is welcome to become involved to
the level they choose and in the ways they prefer.
Explain the positive actions of PAWA.
Services provided by our Association include:
-Support and information by phone and in person, and referral to
other resources, such as respite care, where appropriate.
-Written & taped information on PD for loan or sale
-Regular newsletters
-Educational seminars with expert speakers, including special
seminars for the newly diagnosed
-Network of support groups for people with Parkinson's and their
partners / carers
-Support for local researchers
-New members are also welcome to help with the activities of the
fund-raising committee.
Outline 2- Suitable for Service Groups
Briefly cover the following areas
-What is PD
-Treatment for PD
-Effects on everyday living
-Possible complications from long term medication
-Shift emphases to PAWA activities.
-In addition to the items listed on page 11, discuss the following:
-The need for funding.
-current long term projects
-(eg at time of writing
1. Centre of Excellence Project
2. Nurse Specialist Project,
3. Nursing Home PD Cluster Project
4. Proposed PD unit as part of Nursing course at Curtin)
Current short term requirements (equipment etc.)
Speakers will need to liaise with Bob Grahamfor latest requirements.
Outline 3 - Suitable for non-professionals, home visitors etc.
Concentrate on the following areas
-Be as positive as possible
-The 3 major symptoms
-The need for the PWP to remain as active as possible
-The positive aspects of drug therapy
-Describe the On -Off effect without getting too involved with
causes.
-Explain the body language and communication problems associated with
mask-like face, stillness and loss of spontaneity
++++++++++++++++++++++++++++++++++++++++++++++++++++
