1,104 research outputs found

    “Anything that makes life’s journey better.” Exploring the use of digital technology by people living with motor neurone disease

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    Our aim was to explore the attitudes of those living with motor neuron disease towards digital technology. Postal and online questionnaires surveyed 83 people with MND (pwMND) and 54 friends and family members (fMND). Five pwMND and five fMND underwent semi-structured interviews. 82% of pwMND and 87% of fMND use technology every day with iPads and laptops being the devices most commonly used. pwMND used technology to help them continue to participate in everyday activities such as socialising, entertainment and accessing the internet. The internet provided peer support and information about MND but information could be distressing or unreliable. Participants preferred information from professionals and official organisations. Participants were generally supportive of using of technology to access medical care. Barriers to technology, such as lack of digital literacy skills and upper limb dysfunction, and potential solutions were identified. More challenging barriers included language and cognitive difficulties, and the fear of becoming dependent on technology. Addressing the barriers identified in this research could help pwMND access technology. However, as healthcare delivery becomes more reliant on digital technology, care should be taken to ensure that those who are unable or unwilling to use technology continue to have their needs met in alternative ways

    Clinical aspects of motor neurone disease

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    © 2016. Motor neurone disease (MND) is a disabling and ultimately fatal disease of the motor system, with few effective treatments. Considerable heterogeneity is observed in the clinical motor features of MND, with extra-motor manifestations now also recognized as part of the condition. Diagnosis remains clinical, with appropriate investigations to exclude mimics. The multidisciplinary team approach is at the centre of holistic management of patients and families and can improve survival and quality of life. Although the disease remains incurable, survival benefit has been observed with the use of non-invasive ventilation and riluzole. Recent identification of genetic causes of MND, particularly the . C9orf72 hexanucleotide repeat expansion, adds to the expanding knowledge on aetiology and pathogenesis. However, the challenge of elucidating the underlying causes and establishing effective disease-modifying therapies continues through active research. We review MND, focusing on clinical features, diagnosis and management

    An objective functional characterisation of head movement impairment in individuals with neck muscle weakness due to Amyotrophic lateral sclerosis

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    Background: Neck muscle weakness and head drop are well recognised in patients with Amyotrophic lateral sclerosis (ALS), but an objective characterisation of the consequent head movement impairment is lacking. The aim of this study was to quantitatively characterise head movements in ALS compared to aged matched controls. Methods: We evaluated two groups, one of thirteen patients with ALS and one of thirteen age-matched controls, during the execution of a series of controlled head movements, performed while wearing two inertial sensors attached on the forehead and sternum, respectively. We quantified the differences between the two groups from the sensor data using indices of velocity, smoothness and movement coupling (intended as a measure of undesired out of plane movements). Findings: Results confirmed a general limitation in the ability of the ALS patients to perform and control head movements. High inter-patient variability was observed due to a wide range of observed functional impairment levels. The ability to extend the head backward and flex it laterally were the most compromised, with significantly lower angular velocity (P 0.8), reduced smoothness and greater presence of coupled movements with respect to the controls. A significant reduction of angular velocity (P 0.8) in extension, axial rotation and lateral flexion was observed when patients were asked to perform the movements as fast as possible. Interpretation: This pilot study is the first study providing a functional objective quantification of head movements in ALS. Further work involving different body areas and correlation with existing methods of evaluating neuromuscular function, such as dynamometry and EMG, is needed to explore the use of this approach as a marker of disease progression in ALS

    The role of cranial and thoracic EMG within diagnostic criteria for ALS.

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    INTRODUCTION: The contribution of cranial and thoracic region electromyography (EMG) to diagnostic criteria for amyotrophic lateral sclerosis (ALS) has not been evaluated. METHODS: Clinical and EMG data from each craniospinal region were retrospectively assessed in 470 patients; 214 had ALS. Changes to diagnostic classification in Awaji-Shima and revised El Escorial criteria following withdrawal of cranial/thoracic EMG data were ascertained. RESULTS: Sensitivity for lower motor neuron involvement in ALS was highest in cervical/lumbar regions; specificity was highest in cranial/thoracic regions. Cranial EMG contributed to definite/probable Awaji-Shima categorization in 1.4% of patients. Thoracic EMG made no contribution. For revised El Escorial criteria, cranial and thoracic data reclassified 1% and 5% of patients, respectively. CONCLUSION: Cranial EMG data make small contributions to both criteria, thoracic data contribute only to the revised El Escorial criteria. However, cranial and thoracic region abnormalities are specific in ALS. Consideration should be given to allowing greater diagnostic contribution from thoracic EMG

    A developmental cascade model for early adolescent onset substance use: The role of early childhood stress

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    Contains fulltext : 199688.pdf (publisher's version ) (Open Access)Backgrounds and aims: Despite the link between stress and addictive behavior in adulthood, little is known about how early life stress in families predicts the early emergence of substance use in adolescence. This study tested a developmental cascade model, proposing that early stressful life events and negative parent-child interaction covary, and both disrupt the refinement of inhibitory control, which evolves into problem behavior in middle/late childhood and subsequent substance use exploration in early adolescence. Methods: Data came from the Early Steps Multisite study, a community sample of at-risk families in the metropolitan US areas of Pittsburgh (Pennsylvania), Eugene (Oregon), and Charlottesville (Virginia) with children aged 2 at the start of the study and 14 at the last measurement (N = 364). Structural equation modeling was used to test the proposed model. Results: Early stressful life events and negative parent-child interaction assessed at ages 2 to 5 were negatively related to inhibitory control at ages 7 and 8. Low levels of inhibitory control were prognostic of childhood problem behavior at ages 9 and 10. Finally, late childhood problem behavior was associated with substance use at age 14. Parental drug use was directly related to substance use at age 14. Conclusions: Early life stress may disrupt child inhibitory control, which can cascade into behavioral and peer problem behavior in childhood and, in turn, heighten the risk for early adolescent substance use.9 p

    Transfer-Matrix Monte Carlo Estimates of Critical Points in the Simple Cubic Ising, Planar and Heisenberg Models

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    The principle and the efficiency of the Monte Carlo transfer-matrix algorithm are discussed. Enhancements of this algorithm are illustrated by applications to several phase transitions in lattice spin models. We demonstrate how the statistical noise can be reduced considerably by a similarity transformation of the transfer matrix using a variational estimate of its leading eigenvector, in analogy with a common practice in various quantum Monte Carlo techniques. Here we take the two-dimensional coupled XYXY-Ising model as an example. Furthermore, we calculate interface free energies of finite three-dimensional O(nn) models, for the three cases n=1n=1, 2 and 3. Application of finite-size scaling to the numerical results yields estimates of the critical points of these three models. The statistical precision of the estimates is satisfactory for the modest amount of computer time spent

    Feature subset selection in text-learning

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    Efficacy of the Head Up collar in facilitating functional head movements in patients with Amyotrophic Lateral Sclerosis

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    BACKGROUND: The Head Up collar is a cervical orthosis designed to be adaptable to a patient's needs using adjustable removable supports. The aim of this study was to characterise the ability of this orthosis to provide head support and facilitate the control of head movements in people living with Amyotrophic Lateral Sclerosis. METHODS: Thirteen patients (6 females, age range: 45-74 years old, Amyotrophic Lateral Sclerosis Functional Rating Scale range: 13-44) with neck muscle weakness due to Amyotrophic Lateral Sclerosis were enrolled in the study. An additional inclusion criterion was the presence of enough residual muscle strength to enable the performance of the test procedure. Participants were asked to perform a series of head movements with and without wearing the collar. Two parameters (mean angular velocity and ratio of movement coupling) were extracted from recorded angular velocities, to quantify changes in the execution of the movement between the two conditions. FINDINGS: Participants exhibited different levels of impairment in performing different movements. When wearing the collar self-selected movement velocity was preserved and significant improvement in the control of lateral flexion movement was observed (median ratio of movement coupling value reduced from 1.1 to 0.84, P = 0.013). A lower ratio of movement coupling was also observed in 4 out of 7 individuals that were fitted with anterior supports. INTERPRETATION: The heterogeneity observed in the level of impairment and residual function highlights the need for personalized interventions. The Head Up was effective in enabling more controlled movements and maintaining the natural velocity of head movement
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