ABSTRACT
We have argued throughout this book that in dissecting the experiences of people with MNDIALS we are considering two worlds. One world is a world of suffering. It is a world of people with the disease and their relatives in which both have to manage daily life, not only dealing with the major functional, social and personal problems that the condition brings, but also seeking to understand its meaning - to discover a purpose for their suffering and thereby reducing their existential uncertainty (Adamson 1997). The other world is a world of rationality. It is a world built on the application of technical knowledge, acquired predominantly through a scientific - a rational - approach to information; in short, it is the world of scientific medicine. Indeed, a main part of the narrative of this book is the story of people with the disease and their relatives seeking help from the world of scientific medicine, usually through its clinical manifestations, to enable them to manage this malevolent intervention which has befallen their lives. The nature of the relationship between these two worlds, and indeed between what could be argued to be their major paradigms, suffering and rationality, is in many ways at the heart of making sense of MND/ALS.
