A convivência com a doença de Parkinson na perspectiva do parkinsoniano e seus familiares

Abstract

The objective of the study is to investigate what it is like for the patients and relatives to live with Parkinson's disease This was a qualitative descriptive study, developed with ten individuals with Parkinson's disease and their relatives, summing up twenty informers, through semistructured interviews. Through discourse analysis, we verified that in spite of the difficulties, many patients show acceptance or conformity regarding to the limitations imposed by the disease, while others still experience anger and hope for a cure. The greatest changes demonstrated by patients and family members regard to the question of dependence and loss of autonomy for work, daily life and leisure activities, which impact on the entire family dynamic. This way, small interventions could contribute to a better coexistence with the disease.

Quality of life in Parkinson’s disease patients: progression markers of mild to moderate stages

“…This finding corroborates the results reported in the literature, in which mild PD is characterized by complete functionality and moderate PD by functional impairment due to the more severe signs and symptoms, which act as precursors of disability 13,14 .…”

“…Here, these symptoms were more important in individuals in the MOG, who had a mean disease duration of eight years, compared with three years in the MIG 17,20 . The greatest impairment in terms of quality of life in the MOG was observed in the domains of mobility, stigma, cognition and ADLs, corroborating the findings of studies by Navarro-Peternella et al, 9 Pinheiro et al, 13 Navarro-Peternella and Marcon 14 , and Quintella et al 21 In the mobility domain, having difficulty doing pleasurable leisure activities was one factor that adversely affected quality of life, a finding also reported in studies by Mandira 22 and Tavares et al 23 . Normal mobility is required to perform ADLs and leisure activities; reduced mobility compromises performance of these activities, limits the activities that can be performed and increases the time required to perform them.…”

The daily lives of people with Parkinson's disease

“…For patients, it is not enough to focus on the physical aspects of the disease only, but also on other dimensions, ensuring the maintenance of social relations, independence and autonomy for longer (16)(17) . The adaptation to life with PD, with the limitations and difficulties of everyday life, is revealed through the awareness of the need for better caring for one's own self (4) . This shows the relevance of the nurse's assistance in encouraging self-care and promoting health, so that patients may live more comfortably with the disease despite the changes that occur along its development.…”

“…In addition to the prejudice perceived in the interaction processes and in public spaces, there is also the feeling of self-prejudice, shown through the feelings of shame over one's condition, which is evidenced, for example, by the tremors and slowness when walking. In some cases, the low morale and feelings of shame appear to overcome the desire to maintain social conviviality, despite encouragement from the family (4) . This reality demands that actions are carried out so as to inform people, family and the community in general about the disease, symptoms and treatments, in order to shed light on the possibilities of life with PD.…”

“…The characteristic signs and symptoms of PD result in the coexistence with new situations every day. The instability of the disease and the fact of it being known as incurable constitute a difficult reality to be faced with for the rest of one's life, accompanying individuals in their relationships and in their everyday life (4) . In addition, there is a strong interaction between PD and depression.…”