Inside the O'Briens

Reading Inside the O'Briens gave me so much insight on Huntington's Disease.  I have heard of it before, but did not know much about it until recently from the lecture in Neuro Aspects.  This book gave me a real life depiction of what it would look like dealing with HD or any neurodegenerative illness in my future clinical experience.  The author Lisa Genova describes HD as a family disease, and now I have more of an understanding for what that means.  The novel portrays every family members' different way of dealing with Joe's diagnosis.  Some go about their life normally like Meghan where others experience various amounts of guilt, grief, and mental instability like Rosie and Katie.  The O'Briens are faced with a dilemma of whether to find out if they have the HD gene or not, and each child goes about this process differently.  

While reading this book, I kept asking myself how I think I would react if my family was in the same situation.  I feel that I would react similar to Joe's daughter Katie.  The thought of knowing is terrifying but the thought of not knowing is almost worse.  I empathize with the great amount of guilt she feels with the thought of being gene negative, because how is that fair? But then be totally destroyed and altering her life choice with the thought of being gene positive.  I don't think there is a "right" decision in this scenario, but the most important takeaway from this novel is to "Now here" instead of "Nowhere." I think that quote is going to stick with me!

I am hoping to take my knowledge from this book and apply it in my future OT career.  Unfortunately HD is a very progressive disease, so the client may not see many victories in therapy sessions; however, that makes it even more important to show support and positivity to future clients.  This book taught me a lot about how to try and see neurodegenerative diseases from the prospective of the family.  As an OT who might see HD in a clinical setting, it is important to respect each individual's decisions and not sway those decisions in any way.  I think family members have the right to chose to know or not know their fate.  Regardless of what route they take, we can help them find their own happiness.

Occupational Profile

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 is seeking OT services because he has recently been diagnosed with Huntington’s Disease.  He is concerned with losing his job as a cop due to chorea, forgetfulness, impulsivity and other symptoms of HD.
	Occupations in which the client is successful and barriers or potential barriers to his/her success in those occupations (p. S5)	Roles: father, husband, cop, friend Occupations: driving, eating, self-care, cop duties, yoga (eventually), communicating Barriers: chorea, hard time concentrating and sequencing, clumsiness, forgetfulness, developing OCD behavior
	Personal interests and values (p. S7)	Values his family and children, Boston Red Sox, maintaining his career, independence
	The client’s occupational history/life experiences	Joe lives in triple-decker home with his entire family, him and his wife living on the first floor.  He currently has a very involved and strong family support system. Mother died of Huntington’s Disease Has a weak knee
	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)	Daily Routine: Wakes up, shower, grooming, walks the dog Drives to work Work schedule is variable.  Sometimes works day shifts into the night.  Often works later than he is supposed to.  Often works night shifts. While on duty, he must be ready and alert for any scenario he might have to get involved in. Comes home from work, eats dinner, watches sports on the TV. Every Sunday has dinner with the whole family.
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	Lives in a small town where he grew up Lives on the first story of his house	Owns and operates handguns (could be potentially dangerous as disease progresses) Driving could also potentially become dangerous
	Social	Entire family (wife and 4 kids) lives in the same town/ building Has great cop friends who he can trust	Scared he or his children might be judged for having HD or showing abnormal behavior
	Cultural	Lives in a small community in Boston (close-knit)	Might lose his job if other officers find out about his HD because he is expected to be alert, focused, and under control mentally and physically with his job His symptoms might make him perceived as drunk or under the influence Expected to file accurate police reports through his job
	Personal	Boston police officer Male Middle-aged
	Temporal	His children are all adults now.	Baseball season – calls for late nights and longer shifts Crowd control practice exposed some of his symptoms
	Virtual	N/A	N/A
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)	Joe would like to keep his job as a police officer as long as possible, be able to walk his dog, control behavior changes and outbursts, lessen chorea, spend time with his family.