Neuro Note #4 - Huntington's Disease

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"Facing Death Full of Life" a ted talk by Danielle Valenti. 


Valenti, D. (2015, December 4). Facing death full of life [Video]. TEDxtalks. https://www.youtube.com/watch?v=6JRwCdmewl0 

For this neuro note I wanted to research Huntington's Disease (HD) because will be learning more about it in class this week. Danielle Valenti addresses her diagnosis and experience watching her mother die from this disease in her Ted Talk "Facing death full of life." Huntington's disease is a degenerative brain disease that affects the basal ganglia area. Nerve cells break down and cause issues with movement, cognition, etc. There is no cure for HD. The disease is highly genetic. If one parent carries the gene the likelyhood of the child acquiring the disease is 50/50. Danielle underwent genetic testing immediately following her mother's death. She wanted to know what her future would look like considering her mother died at age 55.  The diagnosis was very hard on her. However, after several months she "woke up" and decided to live her life as happy as she can while she can. I can't imagine going through a loss like that while dealing with a terminal diagnosis. She knew she would face the same battle that killed her mother. That is so devastating. 

-EDIT: With what I have learned in class this week I think this might be the worst disease we have studied so far. Chorea, the medical term for the violent tremors, along with losing your mind..not being able to speak.. I can understand why Danielle's mom wanted to make the choice to stop eating. Then 67 days later she passed. Sixty-seven days. That is a long time to go in pain, confusion..misery. Danielle is such an inspiration to take her story public and advocate for HD.-

Danielle's story is inspiring and relatable to anyone facing a terminal diagnosis. She explains how asking for help is imperative in finding happiness through her difficult situation.  

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