"It Gives Me My Freedom": Technology and Responding to Bodily Limitations in Motor Neuron Disease.

People living with motor neuron disease (MND) experience profound and rapidly progressing impairment. In order to maintain their physical and social functioning, people so affected employ a range of technologies and technological aids (body auxiliaries) to enhance their life and maintain well-being. Using a phenomenological study design, we explored the experiences of 42 men and women who had been diagnosed with MND. Although many participants initially resisted the adoption of aids (often-electronic devices that enabled continued participation in daily life) or tools (the instruments that allowed achievement of specific tasks), such technologies offered a way for people with MND to overcome, to some extent, the limitations posed by their physical degeneration. Through generating a sense of 'normality,' these kinds of 'enabling' technologies promoted social engagement and the maintenance of valued relationships or activities. Technologies can provide people with MND with some positive experiences within a way of being-in-the-world that has become so difficult and challenging.

Motivators for uptake and maintenance of exercise: perceptions of long-term stroke survivors and implications for design of exercise programmes.

PURPOSE: Exercise-after-stroke programmes are increasingly being provided to encourage more physical exercise among stroke survivors, but little is known about what motivates people with stroke to participate in them. This research aimed to identify factors that motivate long-term stroke survivors to exercise, and the implications for programme design. METHODS: In two separate studies, focus groups and individual interviews were used to investigate the views of long-term stroke survivors on exercise and participating in exercise programmes. Their data were analysed thematically, and the findings of the studies were synthesised. RESULTS: Eleven stroke survivors and two partners took part in two focus groups; six other stroke survivors (one with a partner) were interviewed individually. Factors reported to influence motivation were the psychological benefits of exercise, a desire to move away from a medicalised approach to exercise, beliefs about stroke recovery, and on-going support to sustain commitment. A number of potential implications of these themes for exercise programme design were identified. CONCLUSIONS: A range of personal beliefs and attitudes and external factors may affect the motivation to exercise, and these vary between individuals. Addressing these factors in the design of exercise programmes for long-term stroke survivors may enhance their appeal and so encourage greater engagement in exercise. IMPLICATIONS FOR REHABILITATION: Exercise programmes may be more attractive to long-term stroke survivors if the psychological well-being benefits of participation are emphasised in their promotion. Some participants will be more attracted by programmes that are de-medicalised, for example, by being located away from clinical settings, and led by or involving suitably-trained non-clinicians. Programmes offered in different formats may attract stroke survivors with different beliefs about the value of exercise in stroke recovery. Programmes should provide explicit support strategies for on-going engagement in exercise.

Touching moments: phenomenological sociology and the haptic dimension in the lived experience of motor neurone disease.

Currently, there is a relative research lacuna in phenomenological research into the lived experience of motor neurone disease. Based on a sociological research project in the UK, involving 42 participants diagnosed with MND, this article explores the potential of a phenomenological sociology for analysing experiences of this drastically life-limiting neurological disorder. Calls have been made for sociological researchers to analyse more fully and deeply the sensory dimension of the lived body, and this article also contributes to this newly developing body of literature. While the social sciences have been accused of a high degree of ocularcentrism, here we take forward the literature by specifically focusing upon the haptic dimension, given that touch - and particularly the loss of key elements of the haptic dimension- emerged as salient in MND patients' accounts. To illustrate the potential of our phenomenologically inspired theoretical perspective, we consider two specific haptic themes: (i) being out of touch: the loss of certain forms of touch within MND and (ii) unwelcome touch by medical staff.