Janet,
Thanks for the post. I've printed it out and plan to leave it laying out for my
husband to "discover". Maybe, just maybe he will pick it up and take a look!
Couldn't hurt!
Claudia
Janet Paterson wrote:
> "re-re-post"
>
> hello cyber-siblings
>
> there seems to be a flock of new members on the list [siblets?]
> and i thought it might be helpful to re-post this article
> since there were so many positive reactions last time
>
> your psycho-social cyber-sis
> janet
> original posted 970919
> ------------------------------------------------------------
> 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.
> ----------------------------------------------------------------------
>
> janet paterson / 50-9 / sinemet-selegiline-prozac / [log in to unmask]
