chapter
20 Pages

Reframing life and death with motor neurone disease

The quest to understand and manage the disease

Adapting to, managing or coping with a difficult situation, such as that produced by the intrusion of a disease such as MND/ALS in someone’s life, apparently requires accurate and detailed information about the diagnosis and its associated prognosis, as well as about any specific curative - or in the case of MND/ALS - palliative treatments. Indeed, at one level it does. However, such information is not a neutral commodity, particularly from the perspective of the person with the disease and their relatives. For whilst, in principle, such people do require accurate and detailed information, it is information as it relates not just to the disease with which they have been diagnosed, but specifically to their particular situation with all its nuances, special sets of circumstances and so on - in other words to their disease. This issue of the disease as against their disease is one which is troublesome for almost all relationships between those working within the framework of contemporary scientific medicine, and others who are subject to their ministrations.