Neurological diseases and the construction of meaning

Huntington’s disease (HD) and amyotrophic lateral sclerosis (ALS) are both progressive, fatal neurological diseases that together affect 6,000 Canadians. HD is associated with mental and physical deterioration, while ALS is associated primarily with physical deterioration. While there is a longstanding body of literature on the biomedical aspects of HD and ALS, there is little literature or knowledge regarding the experiences of people afflicted with these diseases. HD and ALS may progress in a manner that is unique compared to other non-neurological illnesses. Individuals can receive a diagnosis and then wait years or decades before the severe effects of the disease become apparent. During this time, these individuals are paradoxically ill in concept, but are still physically healthy and can lead comparably normal and productive lives. Michael Halpin is studying how these individuals experience knowing they are seriously ill prior to the development of the most severe symptoms, and how this affects they way in which they view health and their lives. Comparing and contrasting the experiences of people with HD and ALS, he will explore how this period of impending illness influences individuals’ perception of their health and how they view their lives as meaningful after diagnosis. Halpin’s research will improve our current understanding of individuals with these illnesses and give health professionals and researchers greater sensitivity to the concerns of these populations and their unique quality of life issues. Ultimately, this knowledge could help ensure that medical treatments and services are well suited to their experiences and needs.