Background. Parkinson's disease (PD) is a neurodegenerative condition with complex subtleties, making it challenging for physicians to fully inform their patients. Given that approximately 50% of Americans access the Internet for health information, the development of a multimedia, web-based application emphasizing targeted needs of people with Parkinson's disease (PwP) has the potential to change patient's lives. Objectives. To determine what information PwP perceive could enhance their quality of life. Methods. Group sessions utilizing nominal group technique (NGT) were conducted. Participants were asked “what information do you want to know about that would help you live well with PD?” Silent generation of ideas preceded discussion followed by anonymous ranking of items. A “summary score” (sum of rank × frequency) was calculated. Results. 36 individual items were collapsed into 9 categories. Coping with emotions, changing relationships, and social implications of PD were ranked as most important. Financial supports and skills for self-advocacy were also highly ranked. Conclusions. Qualitative research methodology was utilized to determine the unmet needs of PwP. Results of this survey will inform the development of a patient-oriented, online resource, the goal will be to provide information and strategies to improve symptom management, reduce disability and address all relevant concerns important to those affected by PD.

BackgroundAlthough physical activity and exercise is known to benefit people with multiple sclerosis (MS), the ability of these individuals to participate in such interventions is difficult due to the mobility impairments caused by the disease. Keeogo is a lower-extremity powered exoskeleton that may be a potential solution for enabling people with MS to benefit from physical activity and exercise.MethodsAn open-label, randomized, cross-over trial was used to examine the immediate performance effects when using the device, and the potential benefits of using the device in a home setting for 2 weeks. Clinical performance tests with and without the device included the 6 min walk test, timed up and go test and the 10-step stair test (up and down). An activity monitor was also used to measure physical activity at home, and a patient-reported questionnaire was used to determine the amount and extent of home use. Generalized linear models were used to test for trial effects, and correlation analysis used to examine relationships between trial effects and usage.ResultsTwenty-nine patients with MS participated. All measures showed small decrements in performance while wearing the device compared to not wearing the device. However, significant improvements in unassisted (Rehab effect) performance were found after using the device at home for 2 weeks, compared to 2 weeks at home without the device, and participants improved their ability to use the device over the trial period (Training effect). Rehab and Training effects were related to the self-reported extent that participants used Keeogo at home.ConclusionsKeeogo appears to deliver an exercise-mediated benefit to individuals with MS that improved their unassisted gait endurance and stair climbing ability. Keeogo might be a useful tool for delivering physical activity interventions to individuals with mobility impairment due to MS.Trial registrationClinicalTrials.gov: NCT02904382. Registered 19 September 2016 - Retrospectively registered.

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ObjectiveEvaluate safety and efficacy of Incobotulinumtoxin A in elderly patients with dementia and paratonia.SettingUniversity-affiliated hospital, spasticity management Clinic.ParticipantsTen subjects were enrolled. Inclusion criteria: 1) severe cognitive impairment 2) diagnosis of Alzheimer’s disease, vascular dementia, or frontotemporal dementia, and 3) score >3 on the paratonic assessment instrument, with posture in an arm(s) interfering with provision of care. Exclusion criteria: 1) alternate etiologies for increased tone and 2) injection with botulinum toxin within the 6 months preceding the study.DesignSingle center, randomized, double blind, placebo-controlled, crossover trial with two treatment cycles of 16 weeks. Assessments occurred at 2, 6, 12 and16 weeks following injections. Subjects received up to 300 U of Incobotulinumtoxin A in arm(s).Primary and Secondary Outcome MeasuresPrimary outcome measure was the modified caregiver burden scale (mCBS); exploratory secondary outcome measures were also performed. Analysis of variance and mixed modeling techniques were used to evaluate treatment effects.ResultsIncobotulinumtoxin A treatment produced significant improvement in mCBS total score −1.11 (–2.04 to −0.18) (Treatment effect and 95% CI), dressing sub-score −0.36 (–0.59 to 0.12), and cleaning under the left and right armpits sub-score −0.5 (–0.96 to −0.04), −0.41 (–0.79 to −0.04) respectively. PROM in the left and right elbow increased by 27.67 degrees (13.32–42.02) and 22.07 degrees (9.76–34.39) respectively. PROM in the left and right shoulder increased by 11.92 degrees (5.46–18.38) and 8.58 degrees (3.73–13.43) respectively. No significant treatment effect was found for GAS, VAS and PAINAD scales or change in time to perform care. No adverse drug reactions occurred.ConclusionsAdministration of Incobotulinumtoxin A in elderly people with advanced dementia and paratonia may be an efficacious and safe treatment to increase range of motion and reduce functional burden. Further studies are needed to confirm results.Trial RegistrationClinicalTrials.Gov NCT02212119