hello cyber-siblings

there seems to be a yet another flock of new members
yet again on the list [siblets?]

i thought it might be helpful to re-re-post this article
since there were so many positive reactions last time-time

your psycho-social [and sylly] cybyr-sys

janet

original posted 970919, 971104
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Psychosocial Factors in the Treatment of Parkinson's Disease:
A Contextual Approach
------------------------------------------------------------

by
Robert G. Feldman, M.D.,
Peter Mosbach, Ph.D.,
Cathi-Ann Thomas, R.N., M.S., and
Linda M. Perry, R.N., M.Ed.

This is an excerpt of Chapter 14 from the book
The Comprehensive Management of Parkinson's Disease, 1995
Demos Vermande Publications, 386 Park Avenue, New York, NY 10016

------------------------------------------------------------

Parkinson's disease (PD) becomes an unavoidable intrusion in the life of
the affected person and others with whom s/he is involved.

The impairments in daily functioning of the patient and the changes in each
family member's concept of her/his life's plan result in the realization
that treatment of Parkinson's disease requires more from the health care
team than the recognition of the signs and symptoms, making a diagnosis,
and prescribing medication.

Each person with Parkinson's disease has her/his unique experience, which
deserves an individualized treatment plan.

What is universal, however, is the need for each person to know as much as
possible about the condition and how certain insights. anticipations, and
adjustments lead to more effective living with Parkinson's disease.

Since the individual with Parkinson's disease is a member of several
networks (family, social, work), her/his malady also becomes a problem for
these people.

A better understanding of Parkinson's disease by everyone concerned will
result in more effective coping, proper long-term management, and a more
successful therapeutic outcome.

Members of the health care team, including the neurologist, must appreciate
that a diagnosis exists in the context of all other aspects of the
patient's life.

At each stage in the progression of the illness, the patient deals with
actual and perceived losses, that require special considerations and place
unique burdens on the patient, members of her/his family, the physician,
and members of the healthcare team.

A principal goal for all caregivers is to understand the impact of the
disease and to anticipate the needs of the patient and her/his family by
guiding them to helpful solutions throughout the course of Parkinson's
disease.

The condition does not go away after the diagnosis is made.

The formalization of a diagnostic label triggers inevitable reactions and
thoughts that alter the patient's prior conception of her/his life's plan.


------------------------------------------------------------
The Coping Process
------------------------------------------------------------

The complexity of Parkinson's disease presents numerous stresses that need
to be addressed by the patient and her/his family.

Some individuals are able to utilize techniques successfully to deal with
various stresses on a daily basis.

Others, who have not developed an effective set of mental mechanisms for
adapting to changing environmental (external) demands in order to meet
personal (internal) needs. have the greatest difficulty accepting the
diagnosis of Parkinson's disease.

They refuse to accept or 'own' the problem and become a 'victim' of this
malady.

They may attempt to place the responsibility for their treatment on family
members and health care providers.

Coping is the capacity to successfully manage an actual or potential
problem by recognizing the need for adjustment and achieving it, and
requires cognitive and behavioral efforts to master, tolerate, reduce, or
minimize internal and external demands, and the conflicts among them.

Long-term management of Parkinson's disease is usually more successful in
the patient who previously has had effective techniques for coping with
stressful life events; for those who have not, it is the responsibility of
each health care provider to assist in the coping process through the use
of multiple approaches.

The patient with Parkinson's disease must develop and retain a sense of
control over her/his life's plan.

S/he needs to learn how to plan daily activities around the duration of
action of medications and not be 'surprised' by the unpredictability of the
effectiveness of their pharmacological treatment.

Additionally, the patient must have information about the illness,
including symptoms, prognosis, and available alternative treatments.

The perception of having control diminishes the likelihood of becoming a
victim and reduces the sense of hopelessness that accompanies a state of
dependence.

Presented with information about her/his illness, a patient may initially
find it stress-inducing, but those who have access to such information
about their illness become active partners in managing their case with
members of the health care team and have better long-term outcomes than
patients who do not have access to such information.


------------------------------------------------------------
The Assessment Process
------------------------------------------------------------

In order to better understand the psychosocial stresses facing an
individual with Parkinson's disease and to formulate an effective
intervention plan, it is crucial to conduct a comprehensive assessment of
the patient, her/his spouse or significant other, the primary caregiver, as
well as children or parents.

In this way, all those affected directly or indirectly share similar
information upon which to construct a treatment and support plan.

It is important at the onset of treatment for the patient to learn that
helping her/him to most effectively deal with Parkinson's disease requires
the assistance, understanding, and cooperation of other members of their
social network.

Trying to 'keep it a secret' only impedes the adjustment process.

The patient and her/his disease must be considered in the context of the
patient's concept of disease, the family environment, educational and work
background, premorbid personality and life-style, and approaches to problem
solving.


------------------------------------------------------------
Patient's Concept of the Disease
------------------------------------------------------------

Many patients with Parkinson's disease may recall observing friends,
relatives, or acquaintances during the pre L-dopa era when there was no
effective treatment for Parkinson's disease.

Individuals with this disorder frequently had significant levels of
disability, a potentially frightening image to an observer. Such memories
may affect the patient's mental model of Parkinson's disease, as they may
initially perceive it as a disabling and untreatable illness.

A patient's cognitive model or preconceived notions of higher illness or
treatment is often inconsistent with medical reality, and their beliefs may
lead to added stress and ineffective coping strategies.

It is, therefore, important to assess the patient's concept of her/his own
condition.

Although patients with Parkinson's disease share many common
characteristics, the impact of each symptom on an individual patient's life
may be vastly different. What is important to one patient may not be
important to another.

An inventory should be made of those specific activities the patient finds
difficult to perform, those that interfere with her/his ability to perform
work tasks, or those that alter higher physical appearance.

A specifically perceived disability becomes a 'target for therapy' to be
used as the outcome measure of efficacy of treatment.

Improvement after doses of medication or after therapeutic intervention can
be looked for in areas of functioning, such as disturbances of motor
control, gait, posture, arm swing, bimanual tasks, eating, dressing,
impaired socialization, facial expression, volume of voice, conversational
interaction, and depression.

Reaching agreement with the patient and their family about the priority of
given targets of therapy ('things to be fixed') enables the physician,
therapists, and patient to share the expected goals of specific medication
dosages and therapy interventions.

Lack of agreement about this may result in misunderstanding and
disappointment, since the total 'cure' may not be achieved as anticipated
by everyone.

The patient and her/his family also usually have a concept of what they
expect from the physician and other members of the health care team.

Among those expectations is that the physician will listen to the patient
and respect her/his input about the condition and will invite active
participation in decision making.


------------------------------------------------------------
Family Environment
------------------------------------------------------------

It is also important to assess the patient's relationship and geographic
proximity to other relatives such as parents, children, and siblings.

The availability of family members who are able to provide both practical
assistance and emotional support is one of the best predictors of success
in effectively managing a chronic and progressive illness such as
Parkinson's disease.

Family interactions become especially important to the patient when
embarrassment about symptoms leads to social withdrawal and leaves patients
with family members as their primary source of social contact.

The intensity of familial relationships increases proportionally in
importance as level of disability increases.

The strength of familial relationships and clarity of interpersonal
communication are severely tested by stress later in the disease process.


------------------------------------------------------------
Educational and Work History
------------------------------------------------------------

The physician and other members of the health care team can use the
educational background or vocational interests of the patient to improve
communication and thus enhance the understanding of information presented
to the patient in regard to their treatment and prognosis.

It is useful to explain the disease process and treatment approaches in an
appropriate frame of reference to which the patient can relate, using
analogies, metaphors, and diagrams, rather than highly scientific jargon
comprehensible only to the 'insider' health care professional.

When communicating with a patient, never assume prior knowledge, regardless
of the patient's profession or education level.

A patient seeks explanations, directions, and coaching, and it is often the
most sophisticated patients who need the most explicit directions,
reassurance, and support.


------------------------------------------------------------
Premorbid Personality and Coping Style
------------------------------------------------------------

Previous studies have suggested that patients with Parkinson's disease have
a specific premorbid personality and coping style.

In a study of identical twins discordant for the illness, the twin with
Parkinson's disease was more anxious than the undiagnosed sibling. Patients
with Parkinson's disease have often been described as tense,
overcontrolled, and having a perfectionist character style.

For patients with Parkinson's disease who have an obsessive-compulsive
personality type, their coping style is often reflected by an obsession
about their medications. In particular, such patients are often fanatical
about the time they take their medications. Such compulsion about the pills
and the 'clock' needs to be recognized as that patient's particular attempt
to cope and to retain control of her/his environment and circumstances.

Coping strategies can be divided into two types:

(1) problem-solving responses,
which are aimed at changing conditions of the situation, and

(2) emotion-focused responses,
which are intended to reduce the person's unpleasant or fearful feelings
about themselves and aspects of their situation that they cannot change.

Effective coping usually involves both problem-solving and emotion-focused
strategies.


------------------------------------------------------------
Coping Needs in Different Stages of Parkinson's Disease
------------------------------------------------------------

Individualization of Therapy

Each patient and family member will have different medical and psychosocial
needs depending on medical history, family history, level of psychological
functioning, and history of how well they have previously coped with stress.

From the initial contact with the treating neurologist, the importance of
accepting responsibility for her/his condition is emphasized to the patient.

We encourage the acquisition of as much knowledge as possible about her/his
Parkinson's disease and its treatment, so that s/he becomes an active
partner in the treatment and becomes a 'non-victim'.

Therapy for the patient with Parkinson's disease must be individualized to
reflect the stage of progression of the disease.


------------------------------------------------------------
The Early Stages and Previously Untreated Patients
------------------------------------------------------------

The previously untreated patient comes to the neurologist with great anxiety.

The stress of the disease actually begins before the formal diagnosis of
Parkinson's disease is made, as many patients note changes in their body
and subtle impairments long before presenting to a physician.

Some patients exhibit reduced facial expression and overall loss of energy
and are often initially diagnosed as having depression.

It may take one or more years of physician visits before a diagnosis of
Parkinson's disease is established. During the time of uncertainty,
patients may experience, for example, a fear of having a brain tumor.

For some patients, a definitive diagnosis of Parkinson's disease serves as
a relief that they do not have a more serious or potentially fatal
disorder. It can also be a relief to receive an explanation for their
symptoms.

When initially diagnosed with Parkinson's disease, most patients have lithe
knowledge of the disease and do not know what to expect.

Some patients have simply been told, 'You have Parkinson's disease, here is
your prescription, come back for an appointment in six months'. This can be
a distressing experience for many patients who feel overwhelmed and
intimidated by the neurologist and are reluctant to ask questions.

Personal discussion with a neurologist and nurse practitioner is absolutely
necessary in the period following the initial diagnosis of Parkinson's
disease.

Reading generic articles about Parkinson's disease may be frightening for
the early stage patient; therefore, carefully selected written materials
appropriate to the stage and particular areas of concern should be provided
to the patient and her/his family.

Several patients with Parkinson's disease have written very useful books
about their personal experiences with the disease. They may be beneficial
for the newly diagnosed patient as they provide insights not available
elsewhere.

One example is 'Living Well with Parkinson's', by Glenna Atwood. which
provides a clear account of the author's struggle and successes encountered
throughout her years with Parkinson's disease. It is accurate and frank,
yet personal and helpful.

Pamphlets published by patient support organizations and pharmaceutical
companies can also be informative.

Patients are encouraged to join lay support organizations such as the
American Parkinson's Disease Association (APDA), the United Parkinson's
Disease Foundation (UPF), and the National Parkinson Foundation (NPF). By
joining these organizations, patients are able to receive current
information about developments pertaining to Parkinson's disease.

Newly diagnosed patients are encouraged to become active in support groups
appropriate to their age and stage of illness and to share experiences with
others.

At the early stages of Parkinson's disease, most individuals are physically
and cognitively able to continue participating in nearly all social,
vocational, and recreational activities.

Some patients tend to withdraw from activities due to embarrassment about
their symptoms, especially tremor. In the early stages of their illness,
some patients are afraid to let others know that they have Parkinson's
disease, and they devote significant effort to hiding their symptoms.

Attempting to conceal symptoms can lead to increased anxiety, which in turn
can cause an increase in the symptoms of Parkinson's disease.

Those patients who have been able to inform others about their illness, its
symptoms, and treatment tend to be the individuals who cope best at the
early stages.

Case summaries of two individuals with an early stage parkinsonism who used
vastly different strategies in terms of coping with their Parkinson's
disease illustrate this issue.

Both of these individuals were college professors in their late fifties.

The first person readily accepted her Parkinson's disease.

She often took the opportunity to tell others about it and emphasized that
it was not a major issue for her.

In this example, the patient used the emotional strategy of coping by
accepting her condition.

On the first day of the semester, she would inform her class 'I have
Parkinson's disease. It is usually well controlled by the medications I am
taking, but some days you may notice that I have tremor or that I may have
difficulty writing on the blackboard. I hope you will be understanding
about this.'

She found that once she told the students about her Parkinson's disease and
did not appear distressed about it, her ailment was no longer an issue for
her or for the class.

In contrast, the second patient was frightened that others would find out
about his Parkinson's disease.

He tried to alter his environment in order to hide his symptoms, a coping
mechanism that proved less than successful.

When lecturing to his classes, he would arrange to speak from behind a
lectern so that his tremulous hands were out of sight of the audience.

He faced each lecture with a high level of anxiety that only interfered
with his ability to give a lecture and exacerbated his Parkinson's disease
symptoms.

Nondisclosure of symptoms increases the stress of the illness and
interferes with successful adaptation needed for managing Parkinson's disease.

Individuals who use denial or avoidance as a primary coping strategy are
most likely to attempt to conceal their diagnosis from others.

At early stages of Parkinson's disease, this strategy may actually work for
a period of time, but this strategy usually fails as the illness progresses.

Social withdrawal due to embarrassment about early stage symptoms of
Parkinson's disease has been a major issue for many patients. Those
patients who withdraw from their usual social and recreational activities
are most likely to experience depression.

Depression is a common accompaniment of Parkinson's disease. In the early
and middle stages of Parkinson's disease, the level of depression is a
function of self-appraisal processes.

The best predictor of depression is a person's self-rating of her/his own
disability.

Self-appraisal processes and the use of appropriate coping strategies can
reduce the degree of emotional distress that a patient experiences.

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janet [log in to unmask]