Inside the O’Briens shines a light on Huntington’s Disease


There are many diseases in the world and many in the media so much they become 22716194common knowledge.  Last year the ice bucket challenge gave worldwide attention to ALS, which probably a lot of people didn’t know ALS even existed.  It’s a disease that affects roughly 30,000 Americans at any given time.  ALS can strike anyone, it is not hereditary.

Then there is Huntington’s Disease.  It’s different than ALS in many ways except that it affects a small number of people.  Huntington’s Disease is an inherited condition in which nerve cells in the brain break down over time.  This is a hereditary disease that affects 20,000-200,000 Americans a year and the symptoms can start just past the age of 30.

In Lisa Genova’s new book Inside the O’Briens, she takes on Huntington’s Disease.  Joe O’Brien is one of Boston’s finest.  He’s been on the force for over 20 years and is married to Rose and they have four adult children.  Now forty-four, Joe is dropping things, having a hard time concentrating, can’t seem to keep his body still and his temper has been getting worse for the past six years.  Rosie finally convinces him to see a doctor.  Joe thinks the doctor will say he needs knee surgery because he has been falling.  Instead he hears the words Huntington’s Disease.  He also finds out that his kids could have it and that his mother didn’t drink herself to death even though that is what he was told when he was a boy.

At first Joe has a hard time processing this information.  Then he embraces the disease.  The four children need to decide if they want to find out if they test positive for the gene or stay ignorant.  Their son JJ and his wife have recently found out they are going to have a baby.  If JJ has the disease, will it be passed to the baby?

The other family member that is followed closely is Joe and Rosie’s youngest daughter Katie.  She really struggles with deciding if she should find out if she is gene positive or not.  If she isn’t, how is she going to deal with knowing her professional dancing sister, Meghan, is positive?  Someone who loves to move.  Katie also struggles with how to tell her family she is in love but not an Irish-Catholic from the neighborhood.  The struggles Katie goes through trying to decide if she should find out and the struggles with wanting to live her life away from her family sometimes frustrated me because I would want to know.  She is almost stuck in limbo not knowing what she wants to do or what she should do.

This book is a heartbreaker to read.  The O’Brien family are very close.  In fact they live in the same house, but on different floors.  While reading, I kept thinking would I want to know if I had the disease.  I think so, I would want to be able to prepare.  I would want to do as much as possible to be healthy and prolong my life.  I would want to know so I could not have any biological children but maybe adopt.  I would want to know so I could prepare for the future so my loved ones wouldn’t be stuck cleaning up any messes.  And I would want to know so I could see as much of the world as possible and live the fullest life I possibly could.

If you are a fan of Still Alice, which is another heartbreaking book by Genova, then you need to pick up Inside the O’Briens.  A beautifully written book that will take you on a ride that will sadden you, make you care for the O’Brien family and smile at the courage Joe shows through some of the darkest times of his life.  I will say I was very frustrated with the ending and hope if this ever becomes a movie they change the ending.  If you read the book you will know what I mean when I say it was a little rude to end it that way.

Book description:

From award-winning, New York Times bestselling author and neuroscientist Lisa Genova comes a powerful new novel that does for Huntington’s Disease what her debut Still Alice did for Alzheimer’s.

Joe O’Brien is a forty-four-year-old police officer from the Irish Catholic neighborhood of Charlestown, Massachusetts. A devoted husband, proud father of four children in their twenties, and respected officer, Joe begins experiencing bouts of disorganized thinking, uncharacteristic temper outbursts, and strange, involuntary movements. He initially attributes these episodes to the stress of his job, but as these symptoms worsen, he agrees to see a neurologist and is handed a diagnosis that will change his and his family’s lives forever: Huntington’s Disease.

Huntington’s is a lethal neurodegenerative disease with no treatment and no cure. Each of Joe’s four children has a 50 percent chance of inheriting their father’s disease, and a simple blood test can reveal their genetic fate. While watching her potential future in her father’s escalating symptoms, twenty-one-year-old daughter Katie struggles with the questions this test imposes on her young adult life. Does she want to know? What if she’s gene positive? Can she live with the constant anxiety of not knowing?

As Joe’s symptoms worsen and he’s eventually stripped of his badge and more, Joe struggles to maintain hope and a sense of purpose, while Katie and her siblings must find the courage to either live a life “at risk” or learn their fate.

Praised for writing that “explores the resilience of the human spirit” (The San Francisco Chronicle), Lisa Genova has once again delivered a novel as powerful and unforgettable as the human insights at its core.

Until next time…enjoy the view from your passenger seat

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