The Frequency of Nonmotor Symptoms among Advanced Parkinson Patients May Depend on Instrument Used for Assessment

Background. Nonmotor symptoms (NMS) of Parkinson's disease (PD) may be more debilitating than motor symptoms. The purpose of this study was to determine the frequency and corecognition of NMS among our advanced PD cohort (patients considered for deep brain stimulation (DBS)) and caregivers. Methods. NMS-Questionnaire (NMS-Q), a self-administered screening questionnaire, and NMS Assessment-Scale (NMS-S), a clinician-administered scale, were administered to PD patients and caregivers. Results. We enrolled 33 PD patients (23 males, 10 females) and caregivers. The most frequent NMS among patients using NMS-Q were gastrointestinal (87.9%), sleep (84.9%), and urinary (72.7%), while the most frequent symptoms using NMS-S were sleep (90.9%), gastrointestinal (75.8%), and mood (75.8%). Patient/caregiver scoring correlations for NMS-Q and NMS-S were 0.670 (P < 0.0001) and 0.527 (P = 0.0016), respectively. Conclusion The frequency of NMS among advanced PD patients and correlation between patients and caregivers varied with the instrument used. The overall correlation between patient and caregiver was greater with NMS-Q than NMS-S

Effect of Deep Brain Stimulation on Parkinson's Nonmotor Symptoms following Unilateral DBS: A Pilot Study

Parkinson's disease (PD) management has traditionally focused largely on motor symptoms. Deep brain stimulation (DBS) of the subthalamic nucleus (STN) and globus pallidus internus (GPi) are effective treatments for motor symptoms. Nonmotor symptoms (NMSs) may also profoundly affect the quality of life. The purpose of this pilot study was to evaluate NMS changes pre- and post-DBS utilizing two recently developed questionnaires. Methods. NMS-Q (questionnaire) and NMS-S (scale) were administered to PD patients before/after unilateral DBS (STN/GPi targets). Results. Ten PD patients (9 STN implants, 1 GPi implant) were included. The three most frequent NMS symptoms identified utilizing NMS-Q in pre-surgical patients were gastrointestinal (100%), sleep (100%), and urinary (90%). NMS sleep subscore significantly decreased (−1.6 points ± 1.8, P = 0.03). The three most frequent NMS symptoms identified in pre-surgical patients using NMS-S were gastrointestinal (90%), mood (80%), and cardiovascular (80%). The largest mean decrease of NMS scores was seen in miscellaneous symptoms (pain, anosmia, weight change, and sweating) (−7 points ± 8.7), and cardiovascular/falls (−1.9, P = 0.02). Conclusion. Non-motor symptoms improved on two separate questionnaires following unilateral DBS for PD. Future studies are needed to confirm these findings and determine their clinical significance as well as to examine the strengths/weaknesses of each questionnaire/scale

Combined accelerometer and genetic analysis to differentiate essential tremor from Parkinson’s disease

Essential tremor (ET) and Parkinson’s disease (PD) are among the most common adult-onset tremor disorders. Clinical and pathological studies suggest that misdiagnosis of PD for ET, and vice versa, occur in anywhere from 15% to 35% of cases. Complex diagnostic procedures, such as dopamine transporter imaging, can be powerful diagnostic aids but are lengthy and expensive procedures that are not widely available. Preliminary studies suggest that monitoring of tremor characteristics with consumer grade accelerometer devices could be a more accessible approach to the discrimination of PD from ET, but these studies have been performed in well-controlled clinical settings requiring multiple maneuvers and oversight from clinical or research staff, and thus may not be representative of at-home monitoring in the community setting. Therefore, we set out to determine whether discrimination of PD vs. ET diagnosis could be achieved by monitoring research subject movements at home using consumer grade devices, and whether discrimination could be improved with the addition of genetic profiling of the type that is readily available through direct-to-consumer genetic testing services. Forty subjects with PD and 27 patients with ET were genetically profiled and had their movements characterized three-times a day for two weeks through a simple procedure meant to induce rest tremors. We found that tremor characteristics could be used to predict diagnosis status (sensitivity = 76%, specificity = 65%, area under the curve (AUC) = 0.75), but that the addition of genetic risk information, via a PD polygenic risk score, did not improve discriminatory power (sensitivity = 80%, specificity = 65%, AUC = 0.73)

Implementation of Interactive Self-Help Bingo Activities to Promote Social Interaction within Angeline’s Women\u27s Shelter

The city of Seattle is ranked as the third-largest homeless population in the US with approximately 11,751 homeless individuals in 2020 (Public Health-Seattle & King County, 2020). Angeline’s is a former day center that now provides longer term, 24-hour housing for homeless women in Seattle and aims to help them find and maintain safe, stable housing. Their services include meals, laundry, showers, lockers, and connections to community resources. After completing a windshield survey and interview with two of the residents at Angeline’s, our group identified an impaired social interaction due to a lack of organized activities and mental health condition as evidenced by the resident’s expressed interest in diversional activities. Homelessness encapsulates complex challenges beyond just the need for a physical shelter. As mental health is one of the leading causes of homelessness (Perry & Craig, 2015), we aimed to evaluate activities that could improve mental health in homeless women. COVID-19 protocols provided a unique challenge; support groups and organized activities were no longer taking place. This decreased the womens’ connections and interactions throughout the day, which led to impaired mental health. In our interview, a few women desired to play games together such as bingo. This led to us organizing bingo sessions and incorporating educational themes to each bingo card such as exercise, self-care, and coping. With this project, we hoped to engage the women in a joyful and interactive game while also providing education and encouragement through activities in order to improve their mental, physical, and emotional wellbeing. Background According to the U.S. Census Bureau, women make up approximately 47% of the homeless population in King County (Public Health-Seattle & King County, 2019). The rate of women experiencing homelessness in King County has increased since 2018 (Public Health-Seattle & King County, 2019). Upon meeting and collaborating with the women at Angeline\u27s Day Center, we determined that the most commonly expressed concerns were related to a lack of stimulation and socialization. As a result of COVID-19, Angeline’s had implemented protocols including the restriction of visitors and volunteers from entering the facility, and limited outdoor access to one time per day. A nationwide consequence of these types of protocols is increased depression, especially in the homeless community (Honor et al., 2021). Obstacles faced by many homeless individuals include impaired access to mental health resources, social isolation, social role deprivation, and lack of income to participate in recreational activities (Kerman and Sylvestre, 2020). For example, women at Angeline’s discussed that in order to cope with their depression and boredom, many resorted to increased smoking. Bingo Activities The bingo activities consisted of three interactive self help educational games on the topics of physical exercise, coping skills, and self-care. The goal of our program was to increase socialization and interaction between the women at Angeline’s along with increasing the physical, mental, and emotional wellbeing of the participants. To accomplish these goals, the program used diversion coupled with educational tools to encourage the incorporation of physical exercise, coping mechanisms, and self-care into the daily lives of the participants. Throughout the four weeks of interventions, the women were provided education (see Appendix A) on the chosen topic and then engaged in low intensity exercises during physical fitness bingo and learned about/discussed self-care and coping strategies in the other two bingo games. The bingo game had squares with these different exercises, coping mechanisms, or self-care ideas on them (see Appendix B). As the players marked their spots on the bingo card, they would either physically engage in the exercise or have discussion about the strategy. Each of these sessions lasted about one hour consisting of two rounds, and offered prize incentives as motivational factors to increase participation. As a result, this allowed them to learn new health promotion tools while being social and having fun. We chose to use diversional activities as research shows that diversional activities act as a buffer, reducing stress in the lives of women living in homeless shelters (Klitzing et al., 2004). Klitzing et al. (2004) observed that activities, regardless of what they were, assisted women to cope and provided motivation to continue. Furthermore, Klitzing et al. noticed that activities promoted socialization, connection with others, and were shown to be self-restorative. According to Marshall et al. (2020), boredom is a prominent feature of the experience of being homeless. To combat boredom, this population often uses ineffective or detrimental coping strategies such as substance abuse, smoking, or oversleeping (Marshall et al., 2020). As previously noted, the women at Angelines reported an increase in smoking due to boredom. Though boredom may seem small in comparison to other challenges that affect the homeless population, it has been shown to have a profound effect on their lives (Marshall et al., 2020). Outcomes Our goals were to increase the physical, mental and emotional wellbeing of participants along with increasing social interaction. Through our interventions we gathered both qualitative and quantitative data to measure these goals. Prior to determining an intervention, we used interviews and surveys (see Appendix C) to determine that the women felt they lacked diversion and socialization. Our presurvey results showed that though 75% of women were aware of coping skills, only 41% actively used these coping skills. Moreover, 25% of participants were satisfied with their current self-care and exercise practices which varied among participants. Following each bingo session, we had participants fill out a survey to evaluate the impact of our intervention and make improvements. Through the data gathered and feedback from the staff at Angeline’s, we found that the intervention positively impacted the participants by increasing socialization, knowledge, mood, and the use of self-care and coping mechanisms. In the post-intervention surveys, 70-88% of participants reported an increase in knowledge regarding coping and self-care, and 64%-72% reported that they are likely to use skills learned. In addition, in our final survey, 60% of participants reported that these interventions provided an opportunity for social interaction and increased mood. The limitations of this research include a small number of interventions, incomplete surveys, and lack of continuity of participants at each event. The participation fluctuated due to schedule conflicts and engagement may have fluctuated due to language and mental health barriers of participants. A further limitation was due to the inability to build stronger relationships due to COVID-19 isolation protocol and time restraints. Part of the COVID-19 protocols was wearing masks at all times, which prevented the women from seeing the faces of others and forming a more trusting relationship. Future recommendations for this program include ensuring that the bingo interventions have clear easy to follow rules and facilitators use simple language to reduce barriers. Facilitators should encourage participation by asking questions during implementation. A further way to maximize impact is for future facilitators to build trust by forming relationships with the participants. Another recommendation would be to include music during interventions to allow time for free movement and exercise. Overall, implementation of these bingo activities provided an opportunity for diversion, socialization, and education which had a positive impact on the mental and emotional wellbeing of the participants. References Honor, S., Davisse-Paturet, C., Longchamps, C., et al. (2021). Depression during the COVID-19 pandemic amongst residents of homeless shelters in France. Journal of Affective Disorders Reports, medRxiv. 6(1), e100243. https://doi.org/10.1016/j.jadr.2021.100243 Kerman, N, Sylvestre, J. Surviving versus living life: Capabilities and service use among adults with mental health problems and histories of homelessness. (2020). Health & Social Care in the Community, 28(1), 414–422. https://doi.org/10.1111/hsc.12873 Public Health-Seattle & King County. (2019). Data and reports. https://kingcounty.gov/depts/health/locations/homeless-health/healthcare-for-the-homeless/data-reports.aspx Public Health-Seattle & King County. (2020). Point-in-time count estimates a 5 percent increase in people experiencing homelessness, newly updated data dashboards reveal more people receiving shelter and services. https://kingcounty.gov/elected/executive/constantine/news/release/2020/July/01-homeless-count.aspx Klitzing, S. W. (2004). Women living in a homeless shelter: Stress, coping and leisure. Journal of Leisure Research, 36(4), 483–512. https://www.nrpa.org/globalassets/journals/jlr/2004/volume-36/jlr-volume-36-number-4-pp-483-512.pdf Marshall, C. A., Roy, L., Becker, A., Nguyen, M., Barbic, S., Tjörnstrand, C., Boland L., Westover L. A., Mace, J., Gewurtz, R., Kirsh, B., & Wickett, S. (2020). Boredom and homelessness: A scoping review. Journal of Occupational Science, 27(1), 107-124. https://doi.org/10.1080/14427591.2019.1595095 Perry, J., & Craig, T. K. J. (2015). Homelessness and mental health. Trends in Urology & Men\u27s Health, 6(2), 19–21. https://doi.org/10.1002/tre.44

Selective use of low frequency stimulation in Parkinson's disease based on absence of tremor

High frequency stimulation (HFS) of the subthalamic nucleus is one of the most effective treatments for advanced Parkinson's disease (PD). HFS has provided beneficial improvements in the cardinal features of PD, but has not been proven as effective for addressing the axial predominant levodopa resistant symptoms, such as speech disturbances, gait disturbances, and postural instability. Recent studies have suggested that changes in stimulation parameters may influence differing PD symptoms. The purpose of this study was to compare the effects of low frequency stimulation (LFS) versus HFS on the Unified Parkinson's Disease Rating Scale (UPDRS), gait, balance, and verbal fluency. Eight tremor dominant and nine non-tremor dominant participants with bilateral deep brain stimulation of the subthalamic nucleus were tested off stimulation, during LFS, and during HFS. Results revealed that HFS significantly reduced UPDRS tremor score in the tremor dominant group; however no differences emerged within the non-tremor dominant group. No differences between groups or stimulation conditions were found for gait, balance, and verbal fluency measures. These results may suggest that HFS is better than LFS for reducing tremor in tremor dominant patients. However, patients with mild or no tremor show no acute differences in benefit from LFS as compared to HFS

Two McLeod patients with novel mutations in XK

McLeod syndrome (MLS) is a rare, X-linked, late-onset, disease involving hematological, brain, and neuromuscular systems, caused by mutations in XK that result in either defective XK or complete loss of XK protein. Acanthocytosis of erythrocytes is a typical feature. We report novel mutations in two patients who exhibited typical clinical characteristics of MLS. The coding and flanking intronic regions of XK were amplified by PCR, sequenced, and compared with the normal XK sequence. XK protein, and its complexed partner protein, Kell, were assessed by Western blot analysis. Patient 1 was found to have a single base insertion, 605insA at 175Ile creating a frame shift within the coding sequence of XK. Patient 2 had a single base substitution in the 3′ splice sequence of intron 2 (IVS2–2a>g). In both cases mutations resulted in the absence of XK protein

Low Frequency Deep Brain Stimulation for Dystonia: Lower is Not Always Better

Background:&nbsp; It has been observed that low-frequency stimulation (LFS) may be effective for dystonia, and the use of LFS may alleviate the need for frequent battery changes in a subset of patients. The aim of this study was to analyze LFS as a strategy to treat deep brain stimulation (DBS) patients with various dystonias. Methods:&nbsp;Subjects had to receive a minimum of 6 months of clinical follow-up at the University of Florida, and were required to have a minimum of 3 months on a LFS trial. Twenty-seven dystonia DBS patients were retrospectively analyzed from the UF-INFORM database.Results: Thirteen subjects met inclusion criteria. Of the 13 subjects, all had bilateral internal pallidum (GPi) DBS, and five (38.5%) remained with at least one side on LFS settings at their last follow up (average follow up 24 months, range 6&ndash;46 months). Within the first 6 months, six (46%) subjects remained on LFS and seven (54%) were changed to high-frequency stimulation (HFS). Those who remained on LFS settings at 6 months were characterized by shorter disease durations than those on HFS settings. There were no significant differences in dystonia severity (Unified Dystonia Rating Scale and Burke&ndash;Fahn&ndash;Marsden Dystonia Rating Scale) at baseline between the two settings. The estimated battery life for LFS (79.9&plusmn;30.5) was significantly longer than for HFS settings (32.2&plusmn;13.1, p&lt;0.001) Discussion: LFS was ultimately chosen for 38.5% of all subjects. Although this study failed to yield solid predictive features, subjects on LFS tended to have shorter disease durations.</p