Future OT 2020

Lisa Genova’s book  Inside the O’Briens  is an incredibly powerful story that gives the reader an inside look at what Huntington’s disease truly looks like.  Genova does a great job of giving an accurate representation of the disease through the story of Joe O’Brien.  When Joe O’Brien finds out he has Huntington’s disease, his entire world is turned upside down.  While he should be looking at retirement from the police force soon, he is now faced with the fact that his health is going to rapidly deteriorate in the next ten to twenty years of life he has left.  The reader gets to see how his symptoms worsen as the disease progresses.  The symptoms cause O’Brien to lose the ability to do so many things that are important to him very quickly.  Huntington’s take away so many things from the individual but unfortunately that isn’t all it does.  To make things worse, Huntington’s has a genetic component with each child having a 50% chance of having the disease.  O’Brien and his family have

            I have been really interested in learning more about Huntington’s disease since learning about it in class and reading the book “Inside the O’Briens.”   I was particularly interested in hearing more about the effects of Huntington’s Disease on family members.   I decided to watch a TED Talk called Facing Death Full of Life.   In the video, Danielle Valenti talks about her experience with her mother who died from Huntington’s Disease. She explains how the disease often presents as a combination of Parkinson’s, Alzheimer’s, and ALS.   It is a rather rare disease affecting only about 30,000 people.   Valenti’s mother kept the disease a secret for a while to protect her.   She says that in the past HD was often referred to as the “Devil’s Disease” since it takes control of your body and causes uncontrollable movements.   She describes watching Huntington’s take away her mom’s ability to do the most basic tasks.   Her mom eventually went to a Huntington’s Disease nursing home