COPING WITH PD

Social support is “a valuable source of strength in difficult times”. (Nevin, 2000)

Introduction

When a person is diagnosed with a chronic illness, they engage in various mechanisms in an effort to deal with the reality of that diagnosis. They also begin a journey through the disease process, which at times can be very challenging. The way in which an individual copes can depend on their coping style, which in turn leads to the coping response – positive or negative.

Parkinson’s Disease

The main symptoms of the disease are tremor, rigidity, slowness of movement and poor balance. These symptoms can develop over many years with a progression in physical and cognitive ability. The progression of symptoms is very individual to each patient and during this progression the person with Parkinson’s disease has to continually make alterations to their daily routines Parkinson’s alters the individual’s ability to walk, move and even think and essentially affects all aspects of life and ability to perform their activities of daily living. There is a loss of the ability to perform a simple task such as for example, that of drinking a cup of tea without spilling it due to tremor. So the person with Parkinson’s has to work around or find other means of drinking that tea.

Impact of Diagnosis

The diagnosis of an illness is, as seen by many, a major stressful event in someone’s life. A chronic illness, on the other hand, means a permanent change for that individual in terms of quality of life and ability to function in society. Given a diagnosis of a chronic neurological illness, one begins a long journey into the unknown. It can be difficult to accept, and people react differently when told initially of the diagnosis of a chronic illness. In my experience there seems to be no set sequence of reactions, everyone reacts differently, but shock is the most common initial reaction.

It is the manner in which the news of the diagnosis is broken to the individual patient that is most important and most remembered. This process, if done well, helps minimizes stress and trauma for the patient. Some individuals may experience some difficulties in achieving a quick diagnosis by a specialist, with months and in some cases years passing before a correct diagnosis is made. People with Parkinson’s talk about the circumstances surrounding their diagnosis – it is a watershed, and life will never be the same again. However, in dealing with such an uncertain future, you need to have a range of possibilities, alternatives. A diagnosis of Parkinson’s is stressful, and the health professional should assess at this time how much the patient knows about his situation.

Coping

People cope, i.e. try to reduce this stress, in many different ways, now and as time passes. Coping involves continuous adaptation, and how well you cope depends on yourself, your environment, and your state of mind.

Coping Models

You may have read about the process of coping. Perhaps you have read about this concept of the process of adaptation:
· establishing the meaning and significance of the situation,
· confronting reality,
· sustaining relationships with family and friends,
while maintaining a reasonable emotional balance and preserving a satisfactory self image.

You may do this by a journey through analysis of your situation, avoidance and/or denial, then seeking information and support, making adaptations, venting your anger, and working your way towards resigned acceptance - dealing with your feelings. It is to a great extent all in how you see it. If you see it as negative or stressful then it is perceived as a loss, or a threat, or a challenge, and this has ramifications for how you cope.

How you cope may also be influenced by a wide range of personal, behavioural and environmental factors which include social support, personality, individual coping style and other things going on in your life at the time.

The coping response is either problem-focused or emotion-focused. Problem-focused coping focuses on dealing with the cause of the stress and hence taking productive action. An example of this is the way in which Parkinson’s disease patients use physical exercise programmes to overcome muscle stiffness and slowness of movement. Emotion-focused coping is where a person when faced with a stressful event uses an emotional response to regulate the experience - often denial of the diagnosis or illness, which again in some cases can last up to several months to even years usually until the patient starts to take control again. After the initial response, practicalities usually become the next focus – things like reducing harmful environmental conditions, tolerating or adjusting to negative events, maintaining a positive self-image, maintaining emotional equilibrium and continuing to satisfy relationships with others.

Coping Resources

The main coping resources are
1. social support,
2. support groups,
3. morale and well-being, and
4. personality.

1. Social Support -

This is a major influence on adaptive coping - social support influences how people cope with stressful events and from that coping response it influences how social support is used in the future. Social support may soften the severity of the disease or the disease outcome and if there is a high level of social support this makes it easier to adjust to the illness.

When to tell others

The author has had many experiences with Parkinson’s disease patients that still after many years with the condition have not disclosed their illness. Their decisions seem to be heavily influenced by their own family support, seeing that their diagnosis would bring shame on the family, or due to work and the fear of losing their job if they disclosed that they had Parkinson’s disease to their boss.

Concealing the condition can in itself lead to stress, especially if the symptoms are visible.

2. Support Groups -

A great resource. There to provide information, support and advise about the condition, raise public awareness, encourage medical and nursing research and to develop services to ensure that the needs of the patients are met. Support groups can meet unmet needs for social support or can be an additional source of support. Some people want nothing to do with a support group, are afraid of it, and their coping is centred on trying to maintain life as normal and not letting the condition have a central role. However, according to recent studies on this topic, support group members are better able to accept and include their condition and its repercussions into their daily life.

3. Morale and Well-being -

How people feel about themselves can have an impact on how effectively they cope with a chronic illness. For example, tremor in Parkinson’s disease can be the most difficult symptom to treat with medication. This symptom alone can make a person feel very self-conscious and can alter the way in which they feel about themselves and hence can result in depression if the person is not coping. How the patient is coping needs to be discussed with him. Maintain hope - nobody can predict what the future holds, as the progression of Parkinson’s is so individual.

Parkinson’s disease patients have a distinct appearance, which is nearly diagnostic in nature, the tremulous hands, the stooped posture, shuffling gait and the mask-like expressionless face. Maintaining the pre-illness self is relevant to the relationship of coping, illness and well-being. Patients often strive to be identified as the same person they were before diagnosis and that they feel that they still are, and healthcare professionals should relate to the person and not the visible manifestations of the disease and in this way reinforce the patient’s sense of well-being. A strong religious belief can also be a powerful determinant of how well you cope.

4. Personality -

An individual’s personality may predict the coping style or strategy used in a stressful situation and has a powerful input on coping effects - hardiness, optimism and control can strengthen a person’s ability to cope whereas negative, pessimistic, and introverted personality characteristics are all associated with poor coping outcomes. Many physicians – and family members - misunderstand the personality of Parkinson’s disease patients. The symptoms of PD can alter the expression of one’s personality - the appearance of the mask-like expressionless face, low monotone speech and slowness of movement, but the personality traits of extraversion, optimism and conscientiousness are still there, and should be recognised.

Conclusion

Coping is a continuous process for people with Parkinson’s disease and they must constantly make alterations to their daily lives, and for this reason health care professionals must have an understanding of these experiences and intervene where needed to aid the patients to improve their coping ability.