Neuro Note #4

I listened to Danielle Valenti's TedTalk about Huntington's Disease (HD) for my fourth neuro note assignment. Danielle opens up and shares her experience as being her mothers caregiver during her battle with Huntington's Disease. She describes it as a combination of Parkinson's, ALS and Alzheimers. Her mother originally did not tell Danielle about the diagnosis because she didn't want to be a burden on her daughter and there is also no cure for HD. When her mother could no longer care for herself is when Danielle found out and stepped in to take care of her mother. She described watching her mother go from someone who was full of life to a shell of the person she once was. As her mother's health declined she was moved to a nursing home that was specifically designed for people who have Huntington's Disease. This is the point when Danielle's mother decided to end her own life by refusing food, which went on for 67 days. Danielle mourned the loss of her mother but felt the need to get genetic testing done to see if she was a carrier for the HD gene to feel sense of closure for the loss of her mother. This test results came back positive and Danielle knew that she would go through the same experience as her mother at some point in her life. She initially is scared and became afraid of many things but pulled herself through started taking each day one  at a time. She became an advocate for people with HD and anyone who may be struggling through a new diagnosis. The reason I chose this topic for my assignment is because I wanted to learn more about HD and to be prepared to for future course work about it. I found this TedTalk very interesting because Danielle shares what it was like caring for someone who has Huntington's Disease but also shares her own experience of being diagnosed and the feelings that came with that. I learned that HD is genetic and a child has a 50% chance of inheriting the gene from a parent who has it. This story also gives me more knowledge about what life is like for someone with HD and what challenges OT could address to help someone with this disease. I would recommend this TedTalk because it was very insightful to what life with Huntington's Disease is like.

Reference

Facing Death Full of Life | Danielle Valenti | TEDxBerkshires. (2015, December 5). [Video]. YouTube. https://www.youtube.com/watch?v=6JRwCdmewl0