Life Thrives in Love The Narrative Of A Machado-Joseph Disease Patient s Life Progress
2005/6/26
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Abstract This narrative research aims at studying how a Machado-Joseph Disease patient faced her disease and daily life, and how she demonstrated her strength and regenerated her energy to live while her body kept degenerating. Therefore the objectives of this research are to investigate the following areas: 1) To understand the difference of the patient s attitude before and after the awareness of her genetic disease; 2) To understand how genetic disease occurs from one generation to another, different mind set between different members of the family when they are informed of the disease, and different stages of the way family members take care of each other; 3) To understand the patient s strength to stay alive in the knowledge of a currently incurable genetic disease. The methodology in this research involves mainly with interviews, completed with literature review and data analyses. There are six chapters in this thesis, including Preface, Literature Review, Methodology, The Story of One Rope, Analysis and Discussion of the Story, and Introspection and Ideas of Further Research. The findings in this research include: 1. In this research, the patient faced the unknown in life with hope. After the root of the disease was identified, this hope was then transformed into the basis of no-despair. 2. When the patient suffered the disease, she focused her attention totally on her own pain, whereas when it turned out that there were more family members suffering the same disease, they began to bear the disease with the love of a family. When the disease was still in obscurity, there were more complaints in the family. However,
when the situation was cleared up, they became understanding and the whole family was in unity. 3. Facing the incurable genetic disease, the patients were not able to keep living solely with their own senses. The love from and to their family was the major strength that kept the patients to hang on. The researcher makes some suggestions according to the process and results of this research, hoping that they might be helpful for the medical authority and workers. Key words: Machado-Joseph Disease, Narrative Research, Life Progress
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