In preparation for May’s book club, I just finished Inside the O’Brien’s by Lisa Genova.  In her newly released novel, the author tells the heartbreaking tale of an Irish Catholic family, living in Boston, impacted by Huntington Disease.  The story brings the reader to tears while educating readers about this devastating disease which is passed down to offspring 50% of the time.

The O’Brien family is anchored by Joe.  He is the strong father who supports his family, including wife Rosie and his four adult children, as a Boston policeman.  When Joe starts struggling to get reports done, having uncontrolled movements and personality changes he seeks medical attention.  The specialist suspects HD, asking about his family history.   His mother had died an an early age, institutionalized for alcoholism (so he thought) but it turns out that she had shared the genes for HD with her son.

As Joe struggles with his worsening symptoms causing him to quit his job, lose his license and deal with his chorea, he also deals with the impact his diagnosis has on his family.  Each of his four children has a 1 in 2 chance of being positive for the HD gene.  Each of them has to face the possibility and decide whether it is better to know that they would be positive, knowing that their life would be limited, or live without knowing definitively but always wondering if the silent gene would impact their lives.  After counselling, they each make individual decisions about seeking answers as they watch their dad’s symptoms progress.

Genova has done a fantastic job of illustrating another neurologic health issue.  She is teaching readers about HD the way that she has educated about early onset alzheimer’s disease, acquired brain injury and autism.  These diseases impact families world wide and Genova is doing her part to reduce stigma and increase both understanding and compassion.  In latter stages, as chorea increases, HD patients may be mistaken as drunk.  This happened in the story causing Joe to wear a t-shirt identifying his HD.  After reading this book, I hope that people will consider HD before staring and judging others.

If you are looking for more information, the Globe and Mail published Kim’s Story, last year, which describes an Ontario family and their sad experience with HD.  This story remained in the back of my mind as I read Inside the O’Brien’s.