The embodied experience of living with Parkinson’s disease

People with Parkinson’s disease (PD) face many continuous limitations in daily life because of their illness. To illuminate the lived experience of PD and to evaluate ways to give individuals who suffer from PD comprehensive opportunities to come to terms with the impact that the illness has on daily living, two intervention programs and one longitudinal study were carried out.

The overall aims of this thesis were to investigate daily living conditions and the role of environmental and personal strategies for PD-afflicted persons and to illuminate lived illness experience as narrated by persons who suffer from PD - to gain understanding for meeting persons afflicted with PD. The first intervention study (I) was design as a five-week outpatient course with two weekly two-hour sessions; each session consisted of one hour of dialogue and one hour of physical performance.

The next intervention (II, III) was carried out for three consecutive years as a week-long stay in a Swedish mountain area. One study (II) evaluated the effect of the intervention on PD-afflicted persons' mobility patterns, and the other study (III) described environmental influences on lived illness experience as narrated by these persons. In the longitudinal study (IV), a woman within the complicated stage of PD was interviewed continuously over a five-year period about her lived illness experiences.

In study (I) questionnaires (SIP, UPDRS) and an optoelectronic instrument (PLM) were used to evaluate effects from the intervention. In study (II), the PLM was used to evaluate effects from the intervention on mobility patterns in the participants.

In the first intervention, 43 persons with PD participated. The mean age was 75 and mean PD duration was 6 years (I). In the second intervention, 12 persons with PD participated, of which three participated three times and three persons participated two times; the mean age was 68 and mean PD duration was 8.5 years (II, III). When the longitudinal study started, the female participant was 72 and had received the PD diagnosis 15 years earlier (IV). Statistical methods (I, II) and phenomenological methods were used for data analysis (III, IV).

In study I improvements in the participants psychosocial dysfunction, sleep patterns, and in daily activities lasted 12 weeks as did improved mobility patterns. In study II, results in mobility patterns showed immediate and long-lasting improvements in movement speed and integration of movements. Study III illuminated the importance of the environment for experiences of involvement, experiences of limitations, and trust in own abilities. Experiences during the intervention had long-lasting influence on daily living. Study IV illuminated the lived experience of the complicated stage of PD as a striving for involvement within experiences of changing habitual skillfulness that was influenced by environmental and emotional experiences. In creating new forms of expression, new worlds were discovered. These experiences changed the lived meaning of time and space.

List of scientific papers

I. Sunvisson H, Ekman SL, Hagberg H, Lokk J (2001). An education programme for individuals with Parkinsons disease. Scand J Caring Sci. 15(4): 311-317.
https://pubmed.ncbi.nlm.nih.gov/12453172

II. Sunvisson H, Lokk J, Ericson K, Winblad B, Ekman SL (1997). Changes in motor performance in persons with Parkinsons disease after exercise in a mountain area. J Neurosci Nurs. 29(4): 255-60.
https://pubmed.ncbi.nlm.nih.gov/9307929

III. Sunvisson H, Ekman SL (2001). Environmental influences on the experiences of people with Parkinsons disease. Nurs Inq. 8(1): 41-50.
https://pubmed.ncbi.nlm.nih.gov/11882200

IV. Sunvisson H (2003). Living through the complicated stage of Parkinsosns disease. Striving for involvement within experiences of changing habitual skilfulness and a changing horizon. [Manuscript]