For my last neuro note, I wanted to look into a condition that I wanted to learn more about. For me, this neurological condition was Huntington's disease. Huntington's Disease is truly an awful disease. Not only is it a combination of symptoms of Parkinson's, ALS, and Alzheimer's disease, but it also is an inherited disease that is passed down through family lines. If you have the gene you have a 50/50 % chance of either having Huntington's or being a carrier for it and passing it on. In this Ted talk, Danielle Valenti shares her experience with the disease, and in a raw and honest way describes what it was like to watch her mother waste away from this disease, and then the process of finding out that she herself was a carrier of the gene. After watching her mother refuse food in order to end her own life, Danielle had to make a choice. How can you live knowing that your life will end? For Danielle thinking through this question has been a long and drawn out process. In her own words, she says, " I had to decide to start living. Just because I said I wanted to start living, that doesn't automatically equal happiness. This was something I was going to have to commit to every single day. I was going to have to find small things that made my soul smile and put them back into my life little by little." For Danielle, finding a new normal and searching for what makes her happy is allowing her to face death yet still live a full life.
This, from an OT perspective, was so interesting to watch. Our role with working with Huntington's disease, especially in the early and middle stages is to identify what brings the client a sense of purpose and of happiness, and then we find a way to create a new normal. We will be the one's walking with them through the good days and bad days as we problem solve and fight against time to provide our clients with fulfilling lives. If I am being honest, I wish that Danielle's mom had had someone to walk with her even in the dreaded end stage of the disease. It's hard for me to swallow the fact that she chose to end her own life by refusing food, because I believe that there was still so much that could have been done to help her. That is an area that I think I will always struggle with in this job. becuase I want my clients to see their value and still find purpose even in the ends of their lives. This ted talk gave me alot to think through, and also have an up close and personal account of living with huntingtons and processing what that means for the rest of your life. I highly recommend watching it and I am posting the link below!
https://www.youtube.com/watch?v=6JRwCdmewl0
