For this neuro note, I decided to choose Huntington's Disease (HD). We just learned about this disease recently in class, but I wanted to dive deeper in order to gain a better understanding of what HD is like. I wanted to gain knowledge from someone's personal experience with this disease, so I chose to watch a Ted Talk called "Facing Death Full of Life" by Danielle Valenti. Danielle shares about how her mother's diagnosis of HD impacted her life. Her mother found out she had HD but chose to keep it a secret from her daughter to protect her. Danielle explains how horrible this disease is by describing the sad reality of how it took her mother's life. She describes her mother as eventually being "the shell of the woman that raised her." Danielle's mother eventually chose to take her own life by refusing food every day. Danielle decided to let her mother choose her destiny rather than forcing her to do something she did not want to do. Her mother died 67 days after refusing her last bite of food. This was shocking to me as I was thinking the process might have happened faster than that. Danielle decided she wanted to get the genetic test to see if she would eventually develop this disease. Most people that could have HD do not get the test because they know there is nothing they can do about it. Danielle had a different perspective - she didn't feel she could mourn her mother properly unless she got tested because HD will always have an impact on her life no matter what. Danielle tested positive but has no way of knowing when she will develop symptoms. She admits she has bad days living with the knowledge of how her life will end, but she also states that she decided she is going to commit to happiness and knows she will get there because she is investing in it every day.
I admire Danielle's bravery. She is selfless and cared for her mom in a way that allowed her to make her own choices even though Danielle may not have agreed with or liked how things would turn out because of it. I think it's also so brave of Danielle to get the genetic testing done. I have no idea what choice I would make, but I tend to think I would rather not know since it won't make a difference. But until you are put in that kind of position of having the option to know your destiny, I don't think anyone truly knows what they would do. Through watching this video, I have learned a little about what it's like to have a loved one die of HD and know you will have the same results. It is so difficult to imagine, but it is important that we know how to empathize with and care for these people. I have a hard time learning about these awful, life-altering diseases, but I learn a lot when I watch people's personal testimonies. So many of them choose to stay happy during the rest of their time on Earth, and I think that's so inspiring and should drive all of us to choose to be happy in our own lives every day.
References:
[TEDx Talks]. (2015, December 4). Facing Death Full of Life | Danielle Valenti | TEDxBerkshires. Youtube. https://www.youtube.com/watch?v=6JRwCdmewl0
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