Living with advanced Parkinson's disease: a constant struggle with unpredictability.
OBJECTIVE
This paper is a report of an exploration of patients' lifeworld and way of managing life with advanced Parkinson's disease prior to Deep Brain Stimulation and what they expect from life following this treatment.


BACKGROUND
Parkinson's disease is a progressive neurodegenerative disease, which is initially well-treated with L-dopa. Living with Parkinson's disease means living with the experience of continuous loss of independence and self-esteem and unpredictable ON/OFF phenomena. Thus, in the advanced stage of the disease, treatment with Deep Brain Stimulation may become relevant.


METHODS
Eleven patients eligible for Deep Brain Stimulation were interviewed prior to treatment. Data were collected in 2007 and analysed according to the hermeneutic phenomenological methodology of van Manen, using the four existentials as analytic tools.


RESULTS
Living with advanced Parkinson's disease can be described as the experience of living with and managing unpredictability. The disease gradually took over, and participants had to struggle with unpredictability on a daily basis. Themes in relation to this were: The body - setting the agenda, Always a struggle to be on time, Living in dependence and compromise - being a burden, and Living with restrained space and changes in social life.


CONCLUSIONS
Parkinson's disease leads to profound bodily restrictions. Living with an unpredictable body affects all aspects of life, and nurses need to be aware of the impact the disease has on the entire lifeworld, and how this may affect the way treatment is perceived.
Department of Nursing Science, School of Public Health, Aarhus University, Denmark. AHAA@nursingscience.au.dk
Anita
A
Haahr
Marit
M
Kirkevold
Elisabeth O C
EO
Hall
Karen
K
Ostergaard
D000203:Activities of Daily Living / Q000523:psychology; D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D001294:Attitude to Health; D002908:Chronic Disease; D046690:Deep Brain Stimulation; D018450:Disease Progression; D004334:Drug Administration Schedule; D020820:Dyskinesias / Q000209:etiology; D005260:Female; D006801:Humans; D007980:Levodopa / Q000627:therapeutic use; D008297:Male; D008875:Middle Aged; D015404:Nursing Methodology Research; D010300:Parkinson Disease / Q000523:psychology* / Q000628:therapy; D036301:Qualitative Research
D007980:Levodopa