Doctor of Philosophy

dissertationThe purpose of this constructivist grounded theory study was to identify and examine challenges and strategies used by people with parkinsonism to maintain identity. These concerns were explored within the context of daily life, vital relationships, and familiar roles. The setting was three Midwestern states during historic winter weather conditions (2013-2014). Illness descriptions were obtained through medication logs and two scales: Hoehn and Yahr staging and activities of daily living. Qualitative data consisted of 62 in-depth interviews, photos, videos, fieldnotes, and memos. Twenty-five volunteers (10 female/15 male; ages 40-95) with self-reported Parkinson disease participated. Range of disease duration was 3 months to 30 years. Disease staging: I (n = 0), II (n = 0), III (n = 14), IV (n = 8), and V (n = 3). Stage III participants completed daily living activities at an independence level of 60 to 80%, while stage V participants ranged from 20 to 30%. Twenty-one participants used carbidopa-levodopa. Analytic coding procedures generated the theory of Preserving self. This clinically logical 5-staged theory represents social and psychological processes for maintaining identity while living with a life-limiting illness. The stages and transitions are: (1) Making sense of symptoms describes noticing and taking action prediagnosis. Transition: Finding out the diagnosis was shocking, but time-limited. (2) Turning points confronted abilities with demanding tasks and strong emotions. Transition: Unsettling reminders of losses were perpetual. (3) Dilemmas of identity are the difficulties relinquishing comfortable self-attributes. Transition: Sifting and sorting is a time of grieving, letting go, and considering new self-identities. (4) Reconnecting the self synthesizes former and current identities. Transition: Balancing risks and rewards compares a lost past with possible futures. (5) Envisioning a future demonstrates planning pragmatically with tunnel vision. iv Creative methods were developed for maintaining independence; abilities were frequently overestimated. An interesting finding was the use of self-adjusted carbidopa-levodopa beginning during Sifting and sorting continuing through Reconnecting the self. Medication was used as a social prosthesis to function normally, maintain valued relationships, and roles. People with parkinsonisim desperately seek normalcy. Recommendations include medication instruction to bridge wearing-off effects and sensory integrative activities as a self-reconnecting technique

Medication as a social prosthesis: People with Parkinson's negotiating medication

In this article we describe the emotions, responses, and reactions inherent in everyday life, enabled through medication use (mainly levodopa) by people with Parkinson's disease. Ethnographic observations revealed that, rather than taking levodopa on a prescribed schedule, participants learned how and when to take supplemental doses in order to feel and function naturally as they did pre-Parkinson's. Participant observation was conducted with 25 individuals with Parkinson's disease. Data included interviews, observations, photos, and videos. Constructivist grounded theory analytic procedures generated a three-phase process with a theoretical core of Medication as a Social Prosthesis, using “prosthesis” metaphorically. First, Grasping the Situation, is a process of reading bodily symptoms, learning personal and physical constraints, understanding the limits of medication, and finding supportive peer consultations. During the second phase, Gaining Competence, participants learned to synchronize medications with planned activities to counter their symptoms. This behavior was risky and required backup plans for accessing emergency medication. The last phase, Embodying Medication, describes the integration of medication into each person's identity and enabled social functioning despite advancing disabilities. In this way, the frequency and dosing of the medication was controlled by each person, and not the medical prescriber, according to personally defined needs to preserve self