chapter  6
23 Pages

Living and dying with motor neurone disease

There is yet another paradox in relation to this disease which is full of paradoxes For most people with the condition, as the seemingly inexorable progression continues, and points are reached sometimes sooner and sometimes later when symptoms threaten life, the more those symptoms require technical skills and expertise to manage them, the more they raise completely non-technical issues. Those issues are to do with the person at the heart of the disease, and the nature of their relationship to others, as well as to life itself. None the less, the technical management of MND/ALS generates a high level of skills, particularly amongst relatives and informal carers.