Umer Akbar

The value of palliative care (PC) is increasingly recognized in the care of people with Parkinson disease (PWP) and their carepartners. While clinical trials demonstrate PC improves quality of life for PWP and carepartners, little is known about the impact of PC on their experiences of receiving care in real-world settings. We designed and implemented a national outpatient PC project at the Parkinson's Foundation US-based Centers of Excellence (COEs) between August 2021 and November 2023. We aimed to assess preimplementation vs postimplementation changes in perceptions and experiences of PWP and carepartners related to the receipt of PC. Between September and October 2023, an electronic survey was distributed through the Parkinson's Foundation to PWP and carepartners who received care at US-based COEs and non-COEs. Survey questions assessed knowledge, perceptions, and experiences related to PC. Preimplementation and postimplementation data were compared. Surveys were distributed to 12,946 PWP and carepartners; 1,778 participants (1,247 PWP, 531 carepartners) responded. At COEs, PWP reported significant increases in non-motor symptom (NMS) assessment (76.5%-86.7%, p = 0.001) and pain management (45.1%-57.6%, p = 0.01). Emotional and spiritual needs were addressed more frequently (33.3%-44.7%, p = 0.01). Advance care planning (ACP) discussions rose from 18.7% to 27.9% (PWP, p = 0.01) and ACP documentation from 8% to 18.1% (p = 0.001). At non-COEs, similar gains were observed in NMS assessment (65.5%-73.7%, p < 0.001), pain management (31.5%-45.1%, p < 0.001), emotional/spiritual discussions (25.3%-33.6%, p = 0.001), and assessment of carepartner needs (21.6%-29.7%, p = 0.002). Carepartners reported similar improvements. Communication ratings and knowledge of PC were high (>85%) and stable across surveys. PWP and carepartners' perceptions and experiences of care were stronger postimplementation in many, but not all, aspects of PC. As changes were seen in both COEs and non-COEs, it is unclear to what degree findings relate to direct or indirect impacts of team-based implementation of PC vs other broader temporal trends, such as community-level increased awareness of PC. Findings highlight progress and gaps, underscoring the need for continued efforts for cultural and systemic changes to integrate PC into routine PD care.

Subjective cognitive complaints (SCCs) are common in Parkinson's disease (PD), yet the relationship among nonmotor symptoms remains understudied in early-stage, treatment-naïve populations. We examined interrelationships among SCCs, mood symptoms, and cognition in early-stage, treatment-naïve PD. We hypothesized that SCCs would relate to executive functioning and processing speed, and these relationships would be moderated by mood. Cross-sectional baseline data analyzed 250 individuals (169 men, 81 women; aged 50-84 years) in the Parkinson's Progression Markers Initiative. Moreover, t tests and Pearson correlations assessed associations among SCC group status, mood symptoms, and cognition. Ordinary least squares regression evaluated whether mood moderated the relationship between SCC group status and cognition. Participants in the higher SCC group were more likely to demonstrate processing speed impairment (14% vs. 5.3%, p = .02). Those in the higher SCC group exhibited poorer memory (p = .035, d = .41) and processing speed (p = .001, d = .21) and reported more depression symptoms (d = .84) and state (d = .72) and trait anxiety (ps < .001, d = .85). A significant interaction revealed that individuals in the higher SCC group with elevated state anxiety demonstrated worse memory (ps < .05). No other mood moderation effects were found. In early-stage, treatment-naïve PD, more SCCs corresponded with worse mood symptoms and worse processing speed and memory. Memory performance was worse when both higher SCCs and elevated state anxiety are present, but mood did not moderate higher SCCs' relationship with other domains. SCCs may be early indication of neurocognitive vulnerability. Longitudinal research is warranted to determine how mood symptoms impact SCCs' utility for predicting cognitive decline. (PsycInfo Database Record (c) 2026 APA, all rights reserved).

Parkinson's disease (PD) and dementia with Lewy bodies (DLB) are neurobehavioral disorders in which behavioral abnormalities are common but often not recognized. To bring to life the actual descriptions rendered by our patients of their unusual experiences. Members of the Parkinson Study Group were asked to provide illustrative examples of particularly memorable abnormal behaviors that their own PD patients or family members reported. These recollections were deidentified and sorted into categories. These disorders include the classically described syndromes of Capgras, Cotard, Diogenes, Ekbom, Othello as well as overlap parasomnias, and impulse control disorders. Patients with PD often have had unusual experiences that they may not share without inquiries by their healthcare providers, fearful of how they will be perceived. Sensitive inquiries are required to reveal these problems. We believe that reading about real experiences will help sensitize the reader.

In this prospective observational cohort study, we provide preliminary findings from a same-day multidisciplinary fast-tracked normal pressure hydrocephalus (NPH) clinic; incorporating the expertise of movement disorders neurologists, emphasizing the clinical characteristics, consensus classification, and management of patients referred for suspected NPH. We evaluated 111 patients (male/female: 67/44) from April 2022 to May 2023. Based on the multidisciplinary team consensus, 52 (46.8%) were classified as “probable” idiopathic NPH (iNPH), 14 (12.6%) as “possible” NPH, 42 (37.8%) as “unlikely” NPH, and three (2.7%) as secondary NPH. While parkinsonian syndromes were recognized in 19.2% of “probable” iNPH patients (vs. 7.1% in “possible” and 26.2% in “unlikely” NPH), no significant group differences were noted in the scores of the UPDRS-III scale. Degenerative spine pathologies were prevalent across all NPH categories, affecting at least 50% of patients. In the “probable” iNPH group, 78.8% received programmable ventriculoperitoneal shunts, with clinical improvement identified in 87.8% at 12-month follow-up. Our findings underscore the high prevalence of overlapping and competing movement and spinal disorders in patients with suspected NPH. Further, our novel approach, incorporating movement disorder neurologists in NPH multidisciplinary evaluation, improved diagnostic precision and streamlined personalized plans, including further neurological workups, necessary spinal interventions, and medical management or rehabilitation.

To assess the current structures, knowledge, and readiness to integrate palliative care (PC) into Parkinson disease (PD) care at Parkinson's Foundation Centers of Excellence (COE) in the United States. Three unique surveys were administered to health care professionals/staff at COEs to assess PC (1) resources, (2) knowledge and comfort, (3) clinical experience and processes, (4) barriers, and (5) readiness for implementation. Response rates for the 3 surveys were 97%, 98%, and 56%. In total, 41% of COEs have access to outpatient PC specialists, 71% have mental health counseling, 82% have support groups, and 9% had very limited PC resources. Overall, 74% of providers believed persons with advanced PD should receive PC, and knowledge of PC fundamentals was good across providers. For high-needs persons with PD (PWP), only 16% of physicians and 24% of advanced practice providers made referrals to PC specialists ≥75% of the time, while 9% and 16% never made such referrals. Limited time, space, financing, and staffing were seen as major barriers to PC implementation. In total, 37% of providers were satisfied with their COE's ability to provide PC services. Most COEs report a culture open to change and appear well-positioned to implement PC in a more comprehensive fashion. These results demonstrate the emergence of structures and processes to provide PC to persons with PD at COEs. They also identify concrete opportunities to strengthen integration of PC through educational, quality improvement, and advocacy efforts.

Parkinson’s disease (PD) is a neurological progressive movement disorder, affecting more than 10 million people globally. PD demands a longitudinal assessment of symptoms to monitor the disease progression and manage the treatments. Existing assessment methods require patients with PD (PwPD) to visit a clinic every 3–6 months to perform movement assessments conducted by trained clinicians. However, periodic visits pose barriers as PwPDs have limited mobility, and healthcare cost increases. Hence, there is a strong demand for using telemedicine technologies for assessing PwPDs in remote settings. In this work, we present an in-home telemedicine kit, named iTex (intelligent Textile), which is a patient-centered design to carry out accessible tele-assessments of movement symptoms in people with PD. iTex is composed of a pair of smart textile gloves connected to a customized embedded tablet. iTex gloves are integrated with flex sensors on the fingers and inertial measurement unit (IMU) and have an onboard microcontroller unit with IoT (Internet of Things) capabilities including data storage and wireless communication. The gloves acquire the sensor data wirelessly to monitor various hand movements such as finger tapping, hand opening and closing, and other movement tasks. The gloves are connected to a customized tablet computer acting as an IoT device, configured to host a wireless access point, and host an MQTT broker and a time-series database server. The tablet also employs a patient-centered interface to guide PwPDs through the movement exam protocol. The system was deployed in four PwPDs who used iTex at home independently for a week. They performed the test independently before and after medication intake. Later, we performed data analysis of the in-home study and created a feature set. The study findings reported that the iTex gloves were capable to collect movement-related data and distinguish between pre-medication and post-medication cases in a majority of the participants. The IoT infrastructure demonstrated robust performance in home settings and offered minimum barriers for the assessment exams and the data communication with a remote server. In the post-study survey, all four participants expressed that the system was easy to use and poses a minimum barrier to performing the test independently. The present findings indicate that the iTex glove system has the potential for periodic and objective assessment of PD motor symptoms in remote settings.

Parkinson’s Disease (PD) is characterized by distinct motor phenomena that are expressed asynchronously. Understanding the neurophysiological correlates of these different motor states could facilitate monitoring of disease progression and allow improved assessments of therapeutic efficacy, as well as enable optimal closed-loop neuromodulation. We examined neural activity in the basal ganglia and cortex of subjects with PD during a quantitative motor task to decode tremor and bradykinesia — two cardinal motor signs of this disease — and relatively asymptomatic periods of behavior. Analysis of subcortical and cortical signals revealed that tremor and bradykinesia had distinct, nearly opposite neural signatures, while effective motor control displayed unique, differentiating features. The neurophysiological signatures of these motor states depended on the type of signal recorded as well as the location; cortical decoding accuracy generally outperformed subcortical decoding, while tremor and bradykinesia were better decoded from different portions of the subthalamic nucleus (STN). These results provide a roadmap to leverage real-time neurophysiology to understand and treat PD. One Sentence Summary Motor signs of Parkinson’s disease such as tremor and bradykinesia can be independently decoded from subthalamic and cortical recordings.