ObjectivesTo design and test the delivery of an intervention targeting the non-motor symptoms of dystonia and pilot key health and well-being questionnaires in this population.DesignA proof-of-concept study to test the delivery, acceptability, relevance, structure and content for a 3-day group residential programme for the management of dystonia.SettingParticipants were recruited from a single botulinum toxin clinic. The intervention was delivered in the community.Participants14 participants consented to take part (2 withdrew prior to the starting of intervention). The average age was 60 years (range 44–77), 8 of whom were female. After drop-out, 9 participants completed the 3-day programme.InterventionA 3-day group residential programme.Primary and secondary outcome measuresProcess evaluation and interviews were carried out before and after the intervention to explore participant's views and expectations, as well as experiences of the intervention. Select questionnaires were completed at baseline, 1-month and 3-month follow-up.ResultsAlthough participants were not sure what to expect from the programme, they found it informative and for many this together with being in a group with other people with dystonia legitimised their condition. Mindfulness was accepted and adopted as a coping strategy. This was reflected in the 1-month follow-up.ConclusionsWe successfully delivered a 3-day residential programme to help those living with dystonia manage their condition. Further improvements are suggested. The quantitative outcome measures were acceptable to this group of patients with dystonia.
BackgroundBackground: Percutaneous endoscopic gastrostomy (PEG) can facilitate feeding and medication administration in dysphagic patients with Parkinson's disease and related disorders. Information on survival, institutionalization, and complications post PEG might inform feeding decisions. Method Method: A total of 93 patients with Parkinson's disease and related disorders were identified by review of PEG registers and by searching the administrative databases in 2 large UK university hospitals (2005)(2006)(2007)(2008)(2009)(2010)(2011)(2012)(2013)(2014)(2015)(2016)(2017); 83 case notes were available for retrospective review. Care processes and outcomes were assessed. ResultsResults: The following were the diagnoses: 58 (70%) had Parkinson's disease, 10 (12%) had progressive supranuclear palsy, 5 (6%) had multiple system atrophy, 3 (4%) had dementia with Lewy bodies, and 7 (8%) had vascular parkinsonism. The median age was 78 years (interquartile range 72-82); 29 (35%) were women. Care processes included a future care plan in place prior to admission for 18 patients (22%), and PEG was placed during emergency admission in 68 patients (82%). The outcomes included median survival at 422 days; 30-day mortality rate was 6% (5 patients); and of 56 patients admitted from home, 18 (32%) were discharged to institutions (nursing or care homes). The most common complication was aspiration pneumonia for 18 (22%) of patients. Age, sex, diagnosis, admission type, comorbidities, and place of residence did not predict survival. Discharge to own home and follow-up by the home enteral feeding team were associated with longer survival. Conclusion Conclusion:We recommend markers of advanced disease should prompt advanced care planning. Discussions about PEG feeding should include information about post-PEG survival, complications, and risk of institutionalization. Further research is needed on quality-of-life post PEG and ways to reduce aspiration pneumonia. All PEG patients should have nutrition team follow-up.
Epilepsy is primarily a clinical diagnosis that depends on the patient’s account and – importantly – an accurate witness description of the attacks in the even to floss of awareness, consciousness or recall of the events. Unfortunately, not all ‘blackouts’ (loss of consciousness) are witnessed. So are there any useful clues – silent witnesses – that can tell us about the nature of a blackout under these circumstances? CONSIDER FOUR PATIENTS Patient A: a 44-year-old man wakes in the morning feeling non-specifically unwell and notices that he has bitten the side of his tongue. Patient B: a 36-year-old woman wakes in the morning feeling groggy and achy with mid-thoracic back pain, having gone to bed completely well the night before. Because of her back pain she attends her family doctor who arranges a plain X-ray, which shows a thoracic vertebral compression fracture (Fig. 1). Patient C: a 64-year-old man wakes in the morning with
Dopamine agonist withdrawal syndrome (DAWS) has recently been named in the Archives of Neurology. It describes a cluster of symptoms occurring in Parkinson's disease patients with impulse control disorders on tapering down or withdrawal of their dopamine agonist. Drs Lindahl and MacMahon discuss the risk factors for the development of DAWS and some approaches to its management. Copyright © 2011 Wiley Interface Ltd
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