Inside the O'Briens


Inside the O’Briens by Lisa Genova was a fantastic book that gives readers an insight as to what a diagnosis like Huntington’s disease means not just to the individual, but to their families for generations and their community as well.  Huntington’s is a neurodegenerative disorder that impairs one’s cognitive, physical, and psychological function.  One aspect of Huntington’s that differentiates it from other neurodegenerative disorders is that it is an autosomal dominant disorder, which means a child has a fifty-fifty chance of developing Huntington’s if a parent has the disease (Apostolou et al., 2018).  Huntington’s can cause significant stress on family units as family members fear that they might have the gene and as they try to care for their loved ones’ that have the disease as their health deteriorates to the point that they need full time care. 

Inside the O’Briens tells the story of a man named Joe O’Brien who develops Huntington’s disease.  The diagnosis is a shock to the family, and the majority of the book details their thoughts and emotions as they try to process the changes going on in Joe and wrestle with the fact that his four children and grandchild could have also inherited the Huntington’s gene.  Two of the children are tested and are positive for Huntington’s.  One of the children, Katie, wrestles with whether to complete the test or not.

The children are seeing the impact Huntington’s is having on their dad.  He is starting to experience chorea, which is spastic, uncontrollable movements.  He has impairments in his balance and coordination, explosive anger outbursts, suicidal ideation, and impaired cognitive function which is causing him to struggle with executive functioning.  She knows if she tests positive that she will suffer like her dad, and she does not think she will be worthy to marry, have children, or pursue her dreams if she knows she will die prematurely and lose motor and cognitive function like her dad is experiencing.  On the other hand, if she is negative she will struggle with guilt for living when her sister and brother have tested positive. 

This book gives a great example of the thoughts and struggles family members have when someone is diagnosed with Huntington’s.  As a future occupational therapist this book has been very valuable to read.  In reading about Joe’s interaction with his neurologist, I was reminded of how important client-centeredness is when we are treating clients.  Joe and his wife were very upset with how the neurologist mentioned that he might have Huntington’s because they felt like she told them in a very flippant and cold manner.  They felt that she was not thinking about the implications this would have on him and his family by throwing a diagnosis like Huntington’s out there without definitive proof.  This interaction caused them to experience a great amount of anxiety as they waited for his genetic testing.  This portion of the book was a good reminder for me to always have the clients’ interest first and to be sensitive to how they are processing their diagnoses and always exude a caring and empathetic attitude. 

While a diagnosis like HD is devastating to the individual and the family, this book also helped me to see some of the redeeming aspects of a diagnosis like Huntington’s.  Over the course of the book, I could really see how HD brought the family closer together.  The O’Briens know that they have a limited time with Joe and that several of the children will eventually develop HD.  They try to live each day to the fullest and relish every moment they have with each other.  Because Joe was a police officer, he knows that he could have easily died in the line of duty.  He is thankful that he has lived as long as he has when he witnessed many fellow police officers die.  His wife, Rosie, knows this as well, and she has tried to take extra care of Joe by telling him she loves him more often, kissing his forehead more often, and showering him with extra grace since his diagnosis. 

Throughout the book Joe’s daughter, Katie, struggles with whether to move to Portland with her boyfriend or not.  Ordinarily, this action would have enraged Joe and Rosie, and they would have forbidden it.  Because they both know that time is limited, and family is what is most important, they give Katie their blessing to pursue her dreams and are very supportive.  There are many other examples in the book of the family drawing closer together because of the HD diagnosis culminating with whole family coming to Katie’s last genetic testing appointment to support her as she finds out whether she is positive for HD or not. 

I cannot fathom enduring what many families with HD like the O’Briens have, but I enjoyed seeing a few glimpses of joy and thankfulness in the midst of a horrendous disease.  While this book is fictional and not based on a real family, I imagine most families react like the O’Briens by trying to relish every moment with their loved ones.  As a future OT, I want to help them live each day to the fullest and help them to adapt to changes in their body and remain functional and independent for as long as possible. 


Apostolou, P., Reiken, S., Yuan, Q., Wedderburn-Pugh, K., Benoit, F., Moscona, A., ... & Marks, A. (2018). Exploring the Role of Ryanodine Receptors in Huntington's Disease Pathophysiology. Biophysical Journal114(3), 307a.

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