Neuro Note #2

For this assignment I chose to watch a Ted Talk called Facing Death Full of Life by Danielle Valenti. https://www.youtube.com/watch?v=6JRwCdmewl0. Valenti starts off her speech by talking about her mother passing away around a year ago from the 'scary genetic disorder' called Huntington's Disease. Valenti's mother somehow hid her diagnosis from her family until a year before her death. I'm sure that the genetic component of the disease pushed her to do this so her family would not be scared. Valenti explains the fact that if someone's parent has the disease, their children have a 50 percent chance of inheriting it. If the gene is inherited, there is a 100% chance of becoming symptomatic at some point in life. She describes the disease as a combination of ALS, Parkinson's, and Alzheimer's. Valenti asks the audience to envision something that they truly love, and watching it slip away from them while they are loosing their mind and body. This connected back to OT for me because we help people still find ways to achieve the things that they most want to do regardless of diagnosis. The description of a daughter watching her mother slowly deteriorate almost brought me to tears. The pictures that Valenti chose for this Ted Talk helped me understand the consequences of the disease better and how debilitating it can be. Valenti's mother made it clear that she did not want to spend the rest of her life in a nursing home playing bingo or doing arts and crafts. She was one of the people with Huntington's that become depressed-shortly after arriving at a nursing home, she started refusing food. I was shocked that she passed away 67 days after her last bite of food-the pain that she must have gone through is unimaginable. Valenti did not want to force her mother to eat and she let her die the way that she wanted to. She was only 55 years old. After the passing of her mother, Valenti bravely decided to go to a neurologist and see if she was positive for the Huntington's gene. Her test results indicated that she is positive and will eventually develop HD. She went through a depression phase after her diagnosis, but a few months in she decided to make the choice to be happy. She is committed to happiness and invests in it everyday. She copes by breaking her life up into small little chunks and doing things that make her the happiest. This furthered my learning by showing me firsthand what Huntington's can do to someone. It put the depression that clients with Huntington's might face into perspective for me. Inside the O'Briens did a good job of this too, but hearing about a person's actual experience with the disease hit home even harder. I chose to write about this because after finishing the book and learning about Huntington's in class I still felt sad about what this disease does to families. I wanted another perspective on the disease and how someone can cope knowing that they will develop it. I hope that reading so much into this disease can help me find ways to help clients cope with depression. I learned about a younger generation watching an older generation live and die with this disease knowing that they could develop it too. This Ted Talk reiterated the genetic component of this disease and reminded me of the 50% chance of each child developing the gene from their parents. This was a very inspirational Ted Talk which put the positives of living into perspective instead of the negatives. I recommend this to anyone wanting to learn more about HD and the role it plays in depression and families.