Self-tracking in Parkinson’s: The lived efforts of self-management

People living with Parkinson's disease engage in self-tracking as part of their health self-management. Whilst health technologies designed for this group have primarily focused on improving the clinical assessments of the disease, less attention has been given to how people with Parkinson's use technology to track and manage their disease in their everyday experience. We report on a qualitative study in which we systematically analysed posts from an online health community (OHC) comprising people with Parkinson's (PwP). Our findings show that PwP track a diversity of information and use a wide range of digital and non-digital tools, informed by temporal and structured practices. Using an existing framework of sensemaking for chronic disease self-management, we also identify new ways in which PwP engage in sensemaking, alongside a set of new challenges that are particular to the character of this chronic disease. We relate our findings to technologies for self-tracking offering design implications

Studies on eye movements in Parkinson's disease

Heterogeneity in Parkinson’s Disease (PD) phenotype and genotype is probably the main reason why, despite the abundance of biomarkers, we still lack a robust method for diagnosis and prognosis, besides clinical evaluation. Subjective changes in vision and objective measures in eye movements have been extensively studied, but the results are mainly used to better understand the pathophysiology of PD and are not integrated into the clinical praxis. The aim of this doctoral project was to examine if eye movements could serve as useful biomarkers for PD diagnosis and prognosis, and investigate their association with motor function, cognition, and medication effect. In addition, we aimed to examine cognition in a group of patients with a rare metabolic disorder and prominent eye-movement difficulties, the Norrbottnian Gaucher Disease 3 (GD3). Saccades, reading, and sustained fixation were examined in PD patients and healthy controls (HC) in the first three studies. Recruitment took place at Karolinska University Hospital Huddinge for the first two studies, and for the third study at Academic Specialist Center in Stockholm. Three different eye trackers were used, a head-mounted and two screen based, and the assessments were performed in a clinical setting. In the first two studies patients were examined in ON and OFF medication status, in order to evaluate the role of levodopa. In study 1, we examined saccadic parameters in 20 HC and 40 PD patients; study 2 involved reading assessments for 13 HC and 19 PD patients; in study 3 we examined sustained fixation in 43 HC and 50 PD patients. Recruitment for study 4 took place at Sunderby Regional Hospital, in Luleå, and we examined 10 patients with the Norrbottnian type of GD3. Cognitive evaluation was done with the Repeatable Battery for Assessment of Neuropsychological Status (RBANS). PD participants had worse saccadic performance, a slower reading speed, and deficient fixation control. Saccadic gain was associated with motor performance, while latency was related to cognition. Levodopa had no effect on saccadic gain, it worsened latency for the horizontal visually guided saccades and ameliorated the latency of antisaccades, but not the error rate or reading performance. We assumed that reading difficulties were attributed to cognitive, rather than oculomotor deficits. Fixation was more easily interrupted in PD compared to HC, and PD participants’ pupils did not dilate to the same extent as HC, in response to the cognitive effort put during sustained fixation. In study 4 we found that patients with the Norrbottnian type of GD3 have an overall worse cognitive performance compared to that of healthy population, scoring worse in memory and attention tests, present however with preserved language and visuospatial skills. The eye-tracking studies led to the conclusion that this method could be integrated into the clinical praxis as part of the clinical evaluation. It is easy to perform and provides reliable results that enable the understanding of motor, cognitive, and behavioral changes in PD. In order to do so, we would need a common protocol of assessment, so that the results would be comparable between different populations. The last study identified RBANS as a useful and easy-to-use tool for the cognitive examination of Norrbottnian GD3 patients

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

Role of Therapeutic Devices in Enhancing Speech Intelligibility and Vocal Intensity in an Individual with Parkinson’s Disease

The prevailing speech therapy techniques for treating hypokinetic dysarthria in individuals with Parkinson\u27s disease (PD) yields improvements within the clinical setting, however, maintenance and generalization of acquired behaviors continue to be a challenge. The purpose of this study was to investigate the effects of portable therapeutic devices including Ambulatory Phonation Monitor with biofeedback (APM) and auditory masker in maintenance and carryover of improved speech. Our participant was an individual diagnosed with PD for the past 25 years who continued to display speech disturbances despite undergoing several behavioral speech therapy programs and neurosurgical procedures. Speech intelligibility and average intensity measures under automatic, elicited, and spontaneous speech tasks were recorded pre- and postusage of APM and auditory masker for a period of 1 week each. Preliminary findings showed no significant difference in the measures between means (P\u3e0.05) across all tasks for both the devices. Suggestions for future research on therapeutic devices are discussed

Quantitative analysis of language production in Parkinson's disease using a cued sentence generation task

The present study examined language production skills in Parkinson's disease (PD) patients. A unique cued sentence generation task was created in order to reduce demands on memory and attention. Differences in sentence production abilities according to disease severity and cognitive impairments were assessed. Language samples were obtained from 20 PD patients and 20 healthy control participants matched for age, sex and educational level. In addition, a cognitive test for verbal memory and resistance to cognitive interference was administered. Statistical comparisons revealed significant language changes in an advanced stage of the disease. Advanced PD patients showed a reduction in lexical diversity in notional verbs, which was absent in nouns. Cognitive dysfunctions such as impaired verbal memory are suggested to contribute to the typical noun/verb dissociation in PD patients. In addition, advanced PD patients produced more semantic perseverations, which may be related to set-switching problems. In conclusion, whether language disturbances in PD are the result of non-linguistic cognitive dysfunctions or reflect pure language deficits exacerbated by cognitive impairments, remains a matter of debate. However, the negative impact of cognitive dysfunctions may be important

Free-living monitoring of Parkinson’s disease: lessons from the field

Wearable technology comprises miniaturized sensors (e.g. accelerometers) worn on the body and/or paired with mobile devices (e.g. smart phones) allowing continuous patient monitoring in unsupervised, habitual environments (termed free-living). Wearable technologies are revolutionising approaches to healthcare due to their utility, accessibility and affordability. They are positioned to transform Parkinson’s disease (PD) management through provision of individualised, comprehensive, and representative data. This is particularly relevant in PD where symptoms are often triggered by task and free-living environmental challenges that cannot be replicated with sufficient veracity elsewhere. This review concerns use of wearable technology in free-living environments for people with PD. It outlines the potential advantages of wearable technologies and evidence for these to accurately detect and measure clinically relevant features including motor symptoms, falls risk, freezing of gait, gait, functional mobility and physical activity. Technological limitations and challenges are highlighted and advances concerning broader aspects are discussed. Recommendations to overcome key challenges are made. To date there is no fully validated system to monitor clinical features or activities in free living environments. Robust accuracy and validity metrics for some features have been reported, and wearable technology may be used in these cases with a degree of confidence. Utility and acceptability appears reasonable, although testing has largely been informal. Key recommendations include adopting a multi-disciplinary approach for standardising definitions, protocols and outcomes. Robust validation of developed algorithms and sensor-based metrics is required along with testing of utility. These advances are required before widespread clinical adoption of wearable technology can be realise

Cognitive impairment in Parkinson’s disease: Impact and identification of comorbid disease mechanisms

Cognitive impairment is a common and debilitating feature of Parkinson's disease (PD). While it is primarily caused by cerebral propagation of α-synuclein protein, evidence of comorbid diseases is frequently found in autopsy samples. This includes tau and amyloid-β pathologies – the hallmarks of Alzheimer's disease (AD) – and cerebrovascular damage. Comorbid diseases may influence cognition in PD over and above the effects of α-synuclein alone, and this influence may interfere with the results of clinical trials of next-generation medical treatments that target α-synuclein. The primary aims of this thesis were to define the extent and the effects of comorbid disease mechanisms in PD, and to identify viable clinical strategies for detecting coexistent disorders in vivo. Methods included a systematic review of autopsy studies; a factor analysis of the Montreal Cognitive Assessment (MoCA); a regression analysis of two genes; and a cross-sectional neuropsychological study of 45 patients. The systematic review found significant tau pathology in around one-third of PD patients at death. Significant amyloid-β pathology affected over half, and conferred a worse prognosis. Other pathologies (e.g. cerebrovascular disease) were less common, and did not contribute to dementia in PD. The factor analysis showed that the MoCA has limited value for distinguishing cognitive profiles in PD, suggesting that it should be used only for screening. The genetic project found that variation in the APOE gene influenced cognitive decline in early PD; the effect varied between men and women. Variation in MAPT did not affect cognitive decline. Finally, the neuropsychological study found that over half of cognitively impaired PD patients could be clinically diagnosed with a coexistent cognitive disorder, with AD being the most common. Collectively, the results of this thesis show that comorbid diseases, particularly AD, are common in PD, and these contribute to the cognitive phenotype. Consequently, a clinical assessment incorporating selected neuropsychological tests can be used to identify comorbid diseases in PD patients. It is important to consider the potentially confounding impact of multimorbidity in the design and analysis of clinical trials that aim to modulate neurodegeneration in PD by targeting α-synuclein

She will drive the ____ : Verb-Based Prediction in Individuals with Parkinson Disease

Cognitive changes in Parkinson disease (PD) affect language processing, including sentence comprehension impairments, difficulties with processing verbs, and discourse impairments. In many theories of language comprehension, efficient language processing depends on successful implicit prediction of upcoming concepts and grammatical structures. Such prediction processes, in part, may be regulated by the neural dopaminergic system, which is markedly impaired in PD. In non-language tasks, persons with PD (PwPD) are impaired in prediction, sequencing, and probabilistic learning. However, the contributions of these dopaminergic-mediated prediction and probabilistic learning processes to language processing impairments in PD remain unexplored. We tested whether PwPD are impaired in implicit prediction during auditory language processing. The visual-world paradigm was used to investigate implicit predictive eye movements based on verb meaning. Participants listened to semantically predictive and non-predictive sentences while viewing picture stimuli. Both PwPD and controls showed prediction of upcoming nouns from verbs when hearing sentences like “She will drive the car.” Furthermore, PwPD performed equivalently to controls. These results are surprising given the literature, suggesting either that PwPD have normal linguistic prediction, or that more challenging conditions for prediction are required to reveal PD impairments