Inside the O'Briens

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 to face the fact that each of his four children and his unborn grandchildren may be affected by this disease.  A simple genetic test gives them each the chance to know.  The reader will find out that two of his children test positive for the disease and we do not find out the status of the other two children.  The interesting fact is that 90% of children with parents with Huntington’s choose to not find out.  For me, the effects on the family was the most fascinating and heartbreaking part.  The predictive nature of Huntington’s allows you to know you will have a disease that you aren’t showing symptoms of yet.  To watch a family member go through the disease and know that is what you are faced with in the future is a scary thought and I could see why many choose not to be tested.  For O’Brien, it was interesting that he came to realize that what his mother actually suffered and died from was Huntington’s.  With that realization, O’Brien was given a look into what his future would become.  While O’Brien struggled with the diagnosis at first, by the end of the book, he begins to work hard to be a positive example of how to live with Huntington’s for his children.  This book gives a greater understanding of the effects of Huntington’s.  It makes a difference to see how the symptoms actually affect a person.  I am happy to know more about Huntington’s should I ever treat a client with Huntington’s one day in my future career as an OT.  I believe there is a huge importance with this disease to be sensitive to the client as well as the family because this is a very horrible disease.  With no cure or treatment for Huntington’s, clients and family are left with no choice but to endure the effects of the disease.  My hope is that soon there is a treatment or cure for Huntington’s.  Until then, I hope that my role as an OT could help them live their best lives.  

Genova, L. (2016). Inside the OBriens. Farmington Hills, Mich: Large Print Press, a part of Gale,
     Cengage Learning. 

 Occupational Profile 4/20/18

Client Report	Reason the client is seeking OT services and concerns related to engagement in occupations (may include the client’s general health status)	Joe O’Brien has a recent diagnosis of Huntington’s disease based on a neurological exam and MRI.  He has fidgety uncontrollable movements and frequent outbursts of anger.  He also has had occasionally falls.  His symptoms are interfering with his work as a police officer and with relationships with his family.
	Occupations in which the client is successful and barriers or potential barriers to his/her success in those occupations (p. S5)	Client is a Boston police officer.  He has started to have trouble concentrating on and correctly completing his required paperwork.  His jerky movements cause some concern with his job requirements.  There is concern over the safety of the client being able to drive and have a gun.     Client is also a husband and father.  Recent symptoms have begun to interfere with ability to do his job as well as function in his everyday activities without difficulties.  His being easily angered has begun to interfere with personal relationships.  Daily activities have become harder as the disease progresses.
	Personal interests and values (p. S7)	Client values his work as a police officer and being a good husband, father, and friend.  Client enjoys baseball and is Red Sox’s fan.  He also values his independence and being able to care for himself.
	The client’s occupational history/life experiences	Client’s mother is deceased from Huntington’s Disease.  Client lives in a 3-story home.  Family members live on different floors.  His family consists of his wife, four children and daughter-in-law.  The client lives on the first floor with his wife and dog.  The first symptoms of Huntington’s began around 7 years ago with anger outbursts followed by small motor deficits.  Symptoms have worsened since then.
	Performance patterns (routines, habits, & rituals) – what are the client’s patterns of engagement in occupations and how have they changed over time? What are the client’s daily life roles? Note patterns that support and hinder occupational performance. (p. S8)	The client is a Boston police officer, husband, father, friend, and Red Sox’s fan.  The client works as a Boston police officer and his work hours vary.  When he returns home from work, he often spends his time sitting on the couch and watching TV before going to bed.  He has Sunday dinner with his family each week. He enjoys spending time with his family although he doesn’t always get to attend every event.  The client has a habit of drinking and begins to spend more time at bars.
Context	Aspects of the client’s environments or contexts, as viewed by the client (p. S28)	Supports to Occupational Engagement:	Barriers to Occupational Engagement:
	Physical	Client lives on first floor of home eliminating the need of climbing stairs	The disease makes driving dangerous taking away the independence of moving from one place to another
	Social	Client has a great support system of family as well as friends and co-workers who look out for him	Since Huntington’s is somewhat of a hidden disease, it is often frustrating that people in public do not know what his symptoms mean
	Cultural	Through the progression of his disease, client begins to take on more of family’s faith and finds comfort in that	Because of his movements, many people in public tend to think he is intoxicated
	Personal	Client is a 44-year-old male.  He is a husband, father to four children, new grandparent, and police officer	Client struggles with the fact that the disease has been passed to his two children who have been tested and worries his other children and his grandchild will have the disease
	Temporal	Client, unlike his children, did not know he had the disease until symptoms appeared giving him more time to enjoy without knowing about the disease	Client feels that his time is cut short since he was close to retirement and knows he will no longer have that enjoyment
	Virtual	The client has the use of phone to communicate with family and friend when needed.	The client sometimes becomes anxious when not answered fast enough after texting someone.
Client Goals	Client’s priorities and desired target outcomes (consider occupational performance – improvement and enhancement, prevention, participation, role competence, health & wellness, quality of life, well-being, and/or occupational justice) (p. S34)	Client wants to be a positive role model for his children who have tested positive for HD. Client wishes to maintain all the independence possible as the disease progresses.  The client would like to continue to participate in the things he enjoys and be an active participant in family life.  He wishes to make the best of the time he has left.