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Hi Barb,
>Would it be possible for someone to repost the Best Practices piece about
>which some folks on the list are talking about? Apparently, it was in the
>Graham's keynote speech which I did not see. My computer was down during
the
>holidays.
Here is the speech.
Jim
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From: Bob & Joy Graham <[log in to unmask]>
To: Multiple recipients of list PARKINSN <[log in to unmask]>
Subject: Keynote address as requested
Date: Thursday, 1 January, 1998 1:51 pm
BEST PRACTICE IN PARKINSON'S DISEASE
Dr Robert Iansek, Keynote Addresss
Fourth Australian Multi-Disciplinary Conference on Parkinson's Disease,
Perth Western Australia September 12 - 14th 1997
This presentation will cover the approach that has been developed at
Kingston Centre in Melbourne, Australia, for the management of Parkinson's
disease. It will incorporate a description of the multidisciplinary team
approach that is utilised as well as the specific knowledge base that all
team members require to function together in a cohesive force. The
presentation will be presented under the umbrella of Best Practice for
Parkinson's disease. This issue was raised by Mary Baker, President of the
European Parkinson's Disease Association, at the recent XII International
Symposium on Parkinson's disease in London. Mary Baker challenged the
Neurologists at the meeting to improve their practice up and above their
current level. Although I believe it is important that Neurologists do
improve their practice, I think it is also important for all members of the
HealthCare team, including the patient and carer, to look at ways at
contributing to improving practice to the best possible level. Today I
wish to describe the way that we at Kingston Centre have strived to improve
the delivery and quality of service that is available to people with
Parkinson's disease to the level of Best Practice.
At the outset it is important to mention that Parkinson's disease is a
multi-dimensional disease. People with PD develop problems with mobility,
as you are all aware, because of malfunction of the basal ganglia. The
basal ganglia is that part of the brain that malfunctions in Parkinson's
disease. However, there is also malfunction of the non-motor component of
the basal ganglia resulting in lesser known problems affecting cognition,
behaviour and mood. As you are all aware, Parkinson's disease has no cure
because the cause is unknown. Therefore we cannot alter its time course.
It is also a progressive disease that slowly gets worse over time and over
a period of many years. Nerve cell loss continues year after year. The
treatment that is available is directed predominantly to the motor
disturbance and the non-motor disturbance does not respond to medication.
Even in the motor domain after a period of 3-5 years, problems develop in
control of movement and considerable disability occurs with motor
fluctuations of a variety of types. It is also important to remember that
the pathology that occurs in Parkinson's disease is not restricted to the
basal ganglia but extends widely to other parts of the brain. The
resultant effect over time is the development of other symptoms such as
difficulty in blood pressure control, bladder control, bowel control and
also with memory. All these factors over time add up and create a large
disease debt in an individual and it is this disease debt which creates
other problems in areas of domestic relationships, social interaction and
financial difficulties. Globally, therefore, all these problems cannot be
managed by one single individual. It is impractical for people with
Parkinson's disease to be managed by a single Neurologist once every 3
months over a period of 15 minutes.
At Kingston Centre we have approached the management of PD from a different
perspective. We have combined the Geriatric philosophy and the Geriatric
infrastructure with a specialist knowledge base. The Geriatric philosophy
treats the patient not the disease. The holistic approach addresses all
problems that are present in an individual and their family. In order for
Geriatrics to perform this function it requires an infrastructure of
multiple experts working together. Multidisciplinary teams consist of
numerous experts who work together to help an individual better manage with
their complaints. We have added to this approach a specialist knowledge
base that deals with the neurological basis of Parkinson's disease, its
management, its prognosis and its pathophysiology. Information about
drugs, their effects and side-effects are of upmost importance.
Furthermore, through our own research we have developed a rehabilitation
approach that improves function in people with Parkinson's disease. The
knowledge base required to make the rehabilitation approach work has also
been added to the specialist knowledge base of the multidisciplinary team.
It is this combination that makes the teamwork at its best. The knowledge
base provides the team with a cohesive force that joins them together.
Each member understands what the other members are doing and can speak to
the patient in a common language. The knowledge base associated with the
rehabilitation approach enables all team members to utilise the same
guidelines to manage people irrespective of their problems. This is of
relevance as difficulties in mobility can affect speech, swallowing,
balance, walking, turning, manipulative tasks as well as activities of
daily living such as washing, showering, toileting, dressing, cooking and
shopping. The rehabilitation approach utilises the knowledge of basal
ganglia function and how malfunction occurs in Parkinson's disease to
provide guidelines for the development of strategies. These strategies are
designed by each allied health professional within the team for each
patient according to their requirements. However, the guidelines are
always the same whether the strategies are generated by the speech
therapist, by the physiotherapist, by the occupational therapist, by the
neuropsychologist or by the social worker. Each team member knows what
strategies other team members have developed and have utilised. They can
therefore use these strategies if necessary to help people in need. Our
Community Service has taken this interdisciplinary approach one step
further and has become intradisciplinary. In this context one allied
health professional can undertake the tasks of numerous other allied health
professionals in the home situation.
I now wish to explain to you briefly the role of each allied health
professional within the HealthCare team.
The Physiotherapists develop strategies to help people manage with gait,
balance, postural change and bed mobility. The strategies that have been
developed enable patients to function in a near normal capacity when they
are utilising the strategies specific for their problem.
The Occupational Therapists translate the use of these strategies to
activities of daily living. They concentrate on enabling people to walk
better, turn better and function in their home environment in tasks such as
dressing, toileting, preparing meals and travelling from one part of the
house to another. They also concentrate on trying to enable people to
function safely in the community such as in shopping centres. The
Occupational Therapists and the Registered Nurses spend considerable time
in ensuring that drug compliance occurs. This is very important because
patients with Parkinson's disease are on numerous medications taken
frequently through the day and the night and, because of their cognitive
difficulties, may forget medication or mix up the dosages. This requires
considerable education and the use of a number of aids, which facilitate
memory and accurate compliance.
Speech therapists concentrate on development of appropriate voice volume,
voice fluency and voice articulation. Strategies are used which can
improve dramatically the responses that people make in regard to their
speech. Swallowing is a major issue in Parkinson's disease and this does
not usually respond well to medication. It is important, however, for the
benefits of medication to be obtained that the tablets are actually
swallowed and not left in the mouth. Strategies are used on a consistent
basis by the speech therapist to enable people to swallow even when extreme
difficulty exists. Successful use of these strategies enables patients to
swallow, not only their medication, but also their normal meals in a safer
way.
Nurses play a very important role in our multidisciplinary team
particularly in the areas of drug optimisation. Monitoring of mobility is
of upmost importance in designing the drug regime necessary for people with
Parkinson's disease. On our Movement Disorder Ward the nurses monitor
patients every hour for normal mobility, impaired mobility or extra
movements. This enables us to titrate the medication very accurately and
precisely. In addition, monitoring occurs of blood pressure lying and
standing, bladder function, bowel function and side effects to medication.
Nurses educate patients and carers on drugs, the disease and side effects.
In addition, nurses provide an environment in which people feel safe and
secure and trusting knowing that the people who are looking after them
understand them and their disease and will help them when help is required
and not help when help is not required.
The Social Worker provides tremendous help in the area of marital, domestic
and social counselling. There are tremendous difficulties that patients'
experience as a result of the disease which disrupts all these
relationships and they require guidance so that they are better able to
cope and manage with their problems and not disrupt their familial and
social relationships.
The Neuropsychologist is important in documenting cognitive disturbance and
separating this from the problem of dementia, which sometimes occurs in
Parkinson's disease. Knowledge of these problems is of utmost importance
for all the therapists to be able to apply their strategies to an
individual and their carer. The neuropsychologist provides psychological
counselling as well as psychological support.
I now wish to mention briefly, the rehabilitative approach that we have
developed at Kingston Centre. To do so I need to become somewhat
technical. The parts of the brain that are involved in Parkinson's disease
are called the basal ganglia. Malfunction of the basal ganglia results in
the movement disturbance and the associated cognitive disturbance that is
documented in Parkinson's disease. In order for us to understand the use
of rehabilitation I have to explain to you how the basal ganglia works
normally and how it malfunctions in Parkinson's disease. In order to do so
I will compare the relationship between the basal ganglia and the cerebral
cortex with the relationship that politicians have with the public service.
We can consider the politicians as the cerebral cortex. The basal ganglia
could then be considered to be the public service. Like any good public
service they are divided into a number of departments. These departments
in the basal ganglia are given strange Latin names such the substantia
nigra, the globus pallidus, the subthalamic nucleus and the striatum. The
public service can only function normally if the departments are working
and relating to each other in a normal manner. If one department
malfunctions the rest of the departments fall down and the public service
does not perform its function. This is a situation with the control of
movement. The basal ganglia, or the public service, is responsible for
performing movements or activities that have been dictated by the cerebral
cortex or by the politicians. Once given the instructions on what should
be performed, the public service undertakes those tasks automatically
without the politicians being aware of the process involved. Sometimes the
politicians can take control and perform that particular task themselves
but usually they are too lazy and rely on the public service to perform all
these tasks. This liberates them to perform other more interesting tasks
like attending cocktail parties and going on overseas trips. This is the
same relationship that occurs between the basal ganglia and the cerebral
cortex. In order for a movement to take place, the politicians need to go
to a vast library of movement types and they select out the movement they
require by opening the page for the recipe they need. They then hand the
book open at the page and give it to the basal ganglia and they kick-start
this movement off and they then leave the basal ganglia, or the public
service, to complete the movement. The basal ganglia therefore, or the
public service's role in movement control is to keep the page open at the
appropriate recipe for movement and to read the movement in the correct
sequence with the correct timing between one movement and the next so that
it is completed rapidly and appropriately.
In Parkinson's disease, the basal ganglia, or the public service, cannot
keep the page open. The page for the particular recipe continually tends
to fall shut and therefore they cannot read the instructions on how to
perform the movement and cannot cue the movement one onto the other. If
the page is completely shut then the movement cannot start and people
experience what is called akinesia, or difficulty in starting movement. If
the page is open but the basal ganglia, or the public service, cannot
actually see the instructions or the recipe properly then the whole
movement is made smaller or miniaturised. Furthermore, the difficulty in
reading each component of the recipe results in a slower and slower
movement being performed down the sequence. This is what we call the
sequence effect in movement. It should be emphasised that the basal
ganglia, or the public service, in the context of movement control are
concerned purely with running automatic movement skills. The motor
cortical regions, or the politicians, can perform movement if they so wish
but it takes all their attention and capacity to do so. Therefore they
rarely do it themselves and prefer the basal ganglia, or the public
service, to undertake the movement.
I will subsequently illustrate to you these functions and malfunctions in
Parkinson's disease by the example of writing in Parkinson's disease.
This information has been used at Kingston Centre to generate guidelines
for strategies so that allied health staff can design these strategies
according to this information by following the guidelines. The guidelines
are as follows.
Firstly, movement control is normal in Parkinson's disease it requires
activation. It is up to the therapists to devise ways to trick the brain
into movement.
It is important that movement is broken up into smaller components. This
is done so that the motor cortex can initiate the movement and perform a
nearly normal movement for the first few repetitions before the problem of
the basal ganglia comes into play and the movement tends to stop.
We use attention to try and complete movements because this causes the
motor cortex to perform the work rather than the basal ganglia. In this
case the politicians are controlling movement not the basal ganglia.
We use cues to start and to maintain movement. The cues help the basal
ganglia, or the public service, read the page or read the recipe and
therefore the movement is performed relatively normally.
Finally, we ensure that the basal ganglia is not used when doing two
movements and therefore we avoid simultaneous tasks. We only use attention
or the politicians, or the motor cortex, to perform the movement because we
can guarantee that the movement will then be performed normally.
I now will illustrate the use of these guidelines by illustrating some
strategies that we have developed and used successfully at Kingston Centre
by use of a videotape.
In summary, I would like to emphasise that it is possible to achieve best
practice in Parkinson's disease and that I believe we have done so through
our program at Kingston Centre. This has been achieved by combining the
Geriatrics philosophy with a specialist knowledge base. This knowledge
base concerns the relevant information about management of Parkinson's
disease as well as the underlying basis of rehabilitation and how
malfunction occurs in Parkinson's disease. However, I believe that we do
not necessarily require to spend a million dollars to provide best practice
in Parkinson's disease. This is the cost of running our program at
Kingston Centre over a period of 12 months. I believe that each of us as
individuals within a HealthCare team should try and provide best practice.
We can all look at simple ways by which we can improve our practice.
Neurologists can provide more information about the disease, the medication
and the progression. They can attempt to improve compliance of medication
through better education and by the use of allied health professionals.
Allied health professionals themselves can improve their knowledge base and
expertise so that the overall management of Parkinson's disease is
improved. Support organisations such as your own Parkinson's disease
Association can promote increased knowledge through meetings such as this
that has been arranged today. Patients and carers too can contribute to
best practice by asking more questions of their treating physician, or
neurologist, by becoming more involved in the documentation of their
disease and by trying to optimise their own control through better
understanding.
I believe that best practice is possible in Parkinson's disease. I have
demonstrated this to you today. I believe that each and every one of us
can improve practice in Parkinson's disease and that best practice is
really up to each one of us.
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