Neuro Note #4

For this Neuro note I chose to watch a Ted talk by Danielle Valenti called "Facing Death Full of Life". She started out by saying it was the one year anniversary of her mother's death from Huntington's disease. She wanted to share her story in hopes that it might be what somebody needs to hear. Her mom had hid from her that she had this disease for a little while. She did this because she wanted to protect her daughter from knowing there's a fifty percent chance that she could inherit this mutation. Danielle eventually found out her mom had HD , and had to start taking care of her mother as her symptoms worsened. She was unable to do the most basic tasks. She ended up having to go to a huntington's disease nursing home in Vermont. Her mom had made it clear that she didn't want to spend her life in a nursing home, and shortly after arriving there she refused to eat any food. Doctors and nurses brought out food to her everyday, but she refused to eat it no matter what. Danielle was faced with the choice of either forcing her mom to eat or letting her make the decision to die. She allowed her to make this choice, and it was very hard for her to do. Her mother didn't want Danielle to spend what possibly could be her last few healthy years taking care of her. Eventually after 60 days or so after refusing food, her mom passed away. Getting used to a life without her mom was very difficult for her and she grieved for quite some time. She knew she also could be walking around with this same gene, and if she was then she would definitely form symptoms at some point in her life. There is no cure, but there is a genetic test that can show you whether you have this gene or not. For Danielle, she didn't feel as if she could mourn her mom's death without knowing for sure if she had the gene or not. Even though a lot of people told her not too, she went to find out. She could tell with one look at the doctor's face that she also had this gene. She wasn't sure how to feel at first, but then she began to feel really bad for herself. She was afraid all the time and was afraid to live normally. Everything about her life had changed. 

One day, something finally occurred to her that she was going to have to commit to a certain mindset every single day. She would have to find small joys in life everyday and figure out ways to put them into her life. She didn't want to live in a cycle of fear and anxiety like she had been doing. Her main point was she had to commit herself to happiness and invest in that every single day. Thinking too much ahead into the future is scary, but Danielle tries to take life in small chunks and that seems to work for her. She ended the video by giving some advice. She said to allow yourself space for some struggle and you'll push through eventually and be able to re-design life however you want to. You'll make a new normal for yourself even if it seems somewhat scary. These past few videos that I've watched for my neuro notes have been super inspiring. I always find myself really sad after watching these videos but almost hopeful at the same time. Seeing how people share their stories and fight through some of the most deteriorating diseases is very hard to hear about and watch, yet I have learned a lot. I happened to choose this particular topic of Huntington's disease for this neuro note because I wasn't actually sure what the disease was. Danielle's story was very inspiring and I hope that someone in the audience took away something important from it, and was able to apply it to their life. 

References

Valenti, Danielle. “Facing Death Full of Life .” YouTube, 4 Dec. 2015, www.youtube.com/watch?v=6JRwCdmewl0.