RESUMO
INTRODUCTION: Parkinson disease (PD) is the second most common neurodegenerative disease. Members of the Black Diaspora (MBD) and Hispanic/Latinx people are less likely to receive a timely diagnosis following the onset of symptoms and more likely to experience greater disease severity due to late diagnosis. Historically marginalized populations (i.e., MBD, Hispanic, and Latinx communities) are not accurately represented in research; this, along with many other barriers, compounds underreporting and lack of recognition of PD. It is important to understand barriers to early diagnosis and healthcare access for these historically marginalized populations from the community's perspective. METHODS: Our team conducted two focus groups to identify barriers and facilitators to PD healthcare-seeking behavior. We sought to identify which barriers are modifiable to ultimately improve engagement in neurological care for MBD and Hispanic individuals affected by PD. RESULTS: We enrolled 15 participants (13 female; African/African American/Black n = 10, Hispanic/Puerto Rican n = 3, other n = 2) for two focus groups. Discussions revealed sources of barriers to healthcare-seeking behavior in three main domains: legacy of racism in the United States, ancestral cultural environment, and healthcare system access. These sources influenced individuals' PD knowledge and familiarity. Additionally, participants expressed a desire to know more about PD and called for increased community-based programming for education and awareness. DISCUSSION: This paper uses a community-based participatory research approach to describe the experiences of MBD, Hispanic, and Latinx people in Manhattan and the surrounding areas in relation to possible sources of healthcare disparities and delayed PD diagnosis. These sources have broad implications and should be addressed through collaborative community programming.
RESUMO
BACKGROUND: Parkinson disease (PD) is a neurodegenerative disease that has a wide range of motor symptoms, such as tremor. Tremors are involuntary movements that occur in rhythmic oscillations and are typically categorized into rest tremor or action tremor. Action tremor occurs during voluntary movements and is a debilitating symptom of PD. As noninvasive interventions are limited, there is an ever-increasing need for an effective intervention for individuals experiencing action tremors. The Microsoft Emma Watch, a wristband with 5 vibrating motors, is a noninvasive, nonpharmaceutical intervention for tremor attenuation. OBJECTIVE: This pilot study investigated the use of the Emma Watch device to attenuate action tremor in people with PD. METHODS: The sample included 9 people with PD who were assessed on handwriting and hand function tasks performed on a digitized tablet. Tasks included drawing horizontal or vertical lines, tracing a star, spiral, writing "elelelel" in cursive, and printing a standardized sentence. Each task was completed 3 times with the Emma Watch programmed at different vibration intensities, which were counterbalanced: high intensity, low intensity (sham), and no vibration. Digital analysis from the tablet captured kinematic, dynamic, and spatial attributes of drawing and writing samples to calculate mathematical indices that quantify upper limb motor function. APDM Opal sensors (APDM Wearable Technologies) placed on both wrists were used to calculate metrics of acceleration and jerk. A questionnaire was provided to each participant after using the Emma Watch to gain a better understanding of their perspectives of using the device. In addition, drawings were compared to determine whether there were any visual differences between intensities. RESULTS: In total, 9 people with PD were tested: 4 males and 5 females with a mean age of 67 (SD 9.4) years. There were no differences between conditions in the outcomes of interest measured with the tablet (duration, mean velocity, number of peaks, pause time, and number of pauses). Visual differences were observed within a small subset of participants, some of whom reported perceived improvement. The majority of participants (8/9) reported the Emma Watch was comfortable, and no problems with the device were reported. CONCLUSIONS: There were visually depicted and subjectively reported improvements in handwriting for a small subset of individuals. This pilot study was limited by a small sample size, and this should be taken into consideration with the interpretation of the quantitative results. Combining vibratory devices, such as the Emma Watch, with task specific training, or personalizing the frequency to one's individual tremor may be important steps to consider when evaluating the effect of vibratory devices on hand function or writing ability in future studies. While the Emma Watch may help attenuate action tremor, its efficacy in improving fine motor or handwriting skills as a stand-alone tool remains to be demonstrated.