Neuro Note 3- Huntington's Disease

I watched a TEDx Talk titled Facing Death Full of Life by Danielle Valenti in order to learn more about Huntington’s disease from her personal experience.  I chose to further my learning about Huntington’s disease through this TEDx Talk because a fellow classmate had previously watched it and told me that is was very interesting and informative as well.  I found this video very illuminating seeing as I did not know much about this disease before listening to this talk. 

 

In this talk Danielle reveals that her mother was diagnosed with Huntington’s disease but kept it from her daughter until her late 50’s when her health started to decline.  She watched as her funny, intelligent mother became unable to do the most basic tasks because of this disease.  Eventually it got to the point where Danielle’s mother went to live at a nursing home but she did not like that decision so she decided to take her life by refusing to eat.  Danielle allowed her mother to make this decision and waited 67 days after her mother’s last refusal of food until she passed.  Her mother’s passing led to new worries because she now had to face the fact that she could have the disease.  She decided to get tested and found out that she did have it.  This information led to fear and anxiety to live until one day she realized that she needed to start living her life in order to be happy again.  She changed her mind set and began to break up her life into little chunks that made everything a little more bearable.

 

I learned how rare Huntington's disease is, the genetic component, and the fact that every child with a parent with the gene has a 50% chance of getting the gene.  If you inherit the gene, you are 100% going to become symptomatic at some point in your life with this disease.  The disease starts slowly with some cognitive issues and then progresses to severely affecting your mind and body.  It is terminal so there is no stopping it.  

I also was able to hear about some of the mental and emotional affects this disease has on family members.  Firstly, it is hard to watch a family member die and know that there is nothing you can do to stop it.  Secondly, a person can be diagnosed with it but not know when he/she will begin to experience symptoms.  Which understandably can cause fear, anxiety, depression, anger, and many more emotions.  I gained the knowledge from Valenti’s experience that it is okay to allow yourself to struggle and cope but you must also allow others to help you find happiness and live in the moment rather than looking to the unknown future.  I am glad that a classmate recommended this video to me because I enjoyed it and I too would recommend it to others.

 

TEDx Talks. (2015, December 4). Facing Death Full of Life [Video]. YouTube.

https://www.youtube.com/watch?v=6JRwCdmewl0