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Neuro Note #2


            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 in Vermont.  However, her mom did not want to spend the rest of her life living in a nursing home.  She decided to end her life by refusing food.  Although hard, Valenti decided to listen to her and allow her mom to have her last choice.  She refused to eat for 67 days before she died at the age of 55.  At this time Valenti was 29 and without the role of caretaker, she could no longer ignore the fact that she could have the gene for Huntington’s.  What is so interesting about the disease to me is the genetic factor.  As she explained, each child with a parent with Huntington’s has a 50% chance of inheriting the gene.  If the gene is inherited, there is a 100% chance that the person will become symptomatic at some point in their life.  Although no cure or treatment, a genetic test can determine if they have the gene.  One fact Valenti said that surprised me is that there are currently about 200,000 people considered at risk for Huntington’s.  However, only a small percentage will choose to go through with genetic testing since there is nothing that can be done.  Valenti decided to go through with testing because she felt that she couldn’t completely mourn her mom’s death until she knew.  After arriving at the neurologist’s office, she found out that she will be the next generation of Huntington’s Disease.  She doesn’t know when she will become symptomatic.  Although her future looks scary, she tries to take it day by day. 

            I didn't know much about Huntington’s disease previously.  What I found so unique about this disease in particular is the genetic component and how this affects family members.  With every disease, the family members of the individual with the disease are affected as well.  Too often, I think we forget to consider the effects of the diseases on family members.  Family members are often caretakers and are also faced with many challenges and have many emotions.  For Valenti, she was an only child, which also had a huge influence.  With Huntington’s Disease, there is an added effect on family members because they too could be faced with the same disease they are watching their loved one suffer from.  Although not every generation in the family may be faced with the disease, likely more than one person could have HD.  The genetic testing is very interesting to me.  It is interesting how people decide whether or not they want to know if they have the gene.  I could see why someone would be opposed to the test since there is no treatment for the disease.  Hopefully a treatment for HD is in the near future.  Danielle Valenti has a great insight on being a caretaker to someone with Huntington's as well as also being positive for the gene.  My biggest takeaway is to remember to be sensitive to clients as well as family members when you are treating clients with Huntington’s Disease.  


TED Talk - Facing Death Full of Life:  https://www.youtube.com/watch?v=6JRwCdmewl0

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