Neuro note #3

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Facing Death Full of Life | TEDxBerkshires

Danielle Valenti gives a heart wrenching discussion on the impact that Huntington’s disease has on the children and family of those affected. We often examine the lives of those who currently suffer with the disease, but not enough are we listening to the other half of the story. Danielle discovered that her mother had Huntington’s disease at the age of 25, after years of secrecy. She had to take on the impossible task of being her mother’s caregiver during the last years of her life. It was eventually too much to bare and she had no choice but to place her in a Huntington’s end of life home and had to watch as her mother chose to end her life by refusing to eat. This journey was extremely painful for Danielle, but it was unfortunately just getting started. She later discovered that an affair her grandmother had would be the reason that she would become the next generation of Huntington’s. I chose this story because I was curious to learn about the mindset and decision-making process of someone who is in the prodrome stage of this disease. Danielle had to make the unbearable decision to get genetically tested and deal with the depression of learning her fate. Not only was she battling this, but she had to navigate the emotional turmoil her family had put her through by keeping her in the dark. Danielle’s journey has taught me that the emotional and psychological issues that follow this diagnosis may actually be a person’s downfall rather than the terrible physical and cognitive symptoms that are usually known to take the life of someone with Huntington’s. Fortunately, Danielle has overcome her depression about her inevitable future and become an advocate for those who are living with this gene disorder. This is a great Ted Talk for all OT’s to listen to because it reminds us how a disease in the family affects the whole family so deeply. I would also show this video to anyone who is suffering from a life-threatening condition because it demonstrates how it is possible to choose happiness, and still obtain emotional control over their lives.

Talks, T. (2015, December 04). Retrieved August 18, 2019, from https://www.youtube.com/watch?v=6JRwCdmewl0

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