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Amanda Jones

My takeaway from this presentation on Myasthenia Gravis (MG) really showed me how important it is to ask questions.  I had the great opportunity while doing this project to contact Amanda Jones, the woman who I based my case study on.  She loved the fact that someone was showing interest in her condition and was ready and willing to answer any questions I might have had.  Her condition at this point is incurable, but she still finds ways to keep her hope up and enjoy each day even if her energy doesn't stay.  She told me that she is undergoing Chemotherapy and is trying to stay positive about her prognosis.  Each day is a struggle but she admits she couldn't continue without the support of her family.  I felt it vital to focus on ensuring that she participated in social events and was not impeded by the sudden and unexpected bouts of fatigue, so schedule planning was at the top of my list.  Planned rest intervals and family participation is household chores are crucial to help her maintain her energy levels.  Also, finding ways to enable her to continue in her photography business were goals as well through the integration of adaptive equipment and creative strategies.  Overall, I am so thankful I chose a condition that I didn't know a lot about and had the opportunity to get a firsthand testimony about life with MG.

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