Neuro Note: Facing Death Full of Life
Danielle Valenti spoke about her personal experience with Huntington’s Disease in a TEDx Talk titled “Facing Death Full of Life.” Danielle was 29 years old when she found out her mother was in a late stage of Huntington’s Disease. Danielle’s mother was trying to protect her from the stress of being a caretaker and worried she passed the gene on to her daughter. Eventually, her mother was unable to do basic tasks and did not want to live in the nursing home. Danielle’s mother passed away at age 55, 67 days after her last bite of food. Danelle admits the decision to let her mom end her life was not easy but wanted to give her mom that last choice.
Danielle goes on to discuss her experience with genetic testing and coping with her results. She inherited the gene meaning she will develop HD at any time in her life. After mourning the loss of her mother and the results of the genetic test, Danielle wanted to start living her life again. She has redefined happiness and the small pleasures that make her happy, admitting she still has bad days yet accepts that some days will be better than others.
I chose to watch this TEDx Talk immediately after I read the description. I was inspired by Danielle’s vulnerability and strength to live a life committed to happiness despite knowing she will develop the same disease that caused her mother to pass away. I learned the importance of listening to others and their choices even if you disagree. While listening to Danielle speak, I learned that Huntington’s Disease is rare, progressive, and inherited. She refers to HD as the “devil’s disease” because it affects both the mind and the body. She described her mother to be a shell of the person she once knew.
After watching the TEDx talk, I researched HD because I wanted to know more about it. I learned the inherited gene causes a progressive degeneration of nerve cells in the brain (Huntington’s Disease). I also learned some of the movement disorders associated with HD are dystonia, involuntary movements, difficulty walking and speaking (Huntington’s Disease). Some cognitive symptoms are difficulty learning new information, organizing, prioritizing, focusing as well as lack of impulse control and awareness of their own abilities and behaviors (Huntington’s Disease). Psychiatric symptoms of HD include social withdrawal, depression, fatigue, irritability, and insomnia (Huntington’s Disease).
I recommend this TEDx Talk for anyone who wants to learn more about Huntington’s Disease. Danielle is an inspiration for others in the same situation or others who are coping with their world turned upside down.
Sources:
Huntington's disease. (2020, April 14). Retrieved August 09, 2020, from https://www.mayoclinic.org/diseases-conditions/huntingtons-disease/symptoms-causes/syc-20356117
Valenti, D. (2015, December 4). Facing Death Full of Life [Video]. TEDx.
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