Inside the O'Briens

Inside the O'Brens by Lisa Genova gives in inside look at a family that recently discovered they carry the HD gene. Joe O'Brien lived his whole life thinking his mother died at a young age, in a state hospital due to 'being a drunk'. It's not until he gets the Huntington's diagnosis at age 44 that he realizes he was wrong. Genova does a great job educating the reader on the effects of Huntington's and what it does to a family. I even learned a couple things about the disease that I never thought of before reading, such as there is a grey area in genetic testing where they have enough CAG repeats that they could get Huntington's. Also, I learned that as the disease progresses, people actually lose weight due to excessive chorea. I never thought fidgeting could take up enough calories to have an effect like that. My favorite thing about this book was that Genova gave the perspective of Joe, as well as, Katie, his youngest daughter. With hearing Joe's thoughts, the reader gets a first hand experience of the social hardship of having the disease, the difficulty with symptoms and proprioception, and how the public reacts to Joe and how that effects him. With Katie, the reader sees the family side of HD. They get to see the difficulty behind the decision for genetic testing, the constant fear in every little clumsy thing they do, and what it's like to watch a loved one struggle with a disease that you could potentially get one day. Throughout the book, you find out that two of the siblings tested gene positive for HD but you never find out if Katie, one of the characters we grow to love, is positive or negative. I think this is for a reason. Katie represents a family coming to terms with the disease. It's not about being gene positive or negative, it's about learning to live your life to the fullest, no matter the circumstances and not letting HD define who you are or who you are going to be in life. 

Name: Joe O’Brien                                                                                         Date: 04/22/2018

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 is seeking OT for relief of symptoms of Huntington’s disease. He is noticing an increase in chorea, causing weight loss, beginning to experience some muscle weakness in his jaw with slurred speech, and difficulty controlling mood.
	Occupations in which the client is successful and barriers or potential barriers to his/her success in those occupations (p. S5)	The client is independent when it comes to feeding and is drinking from a straw. He’s noticed barriers when it comes to some ADL such as self-dressing and has adjusted his wardrobe to sweatpants and t-shirts to accommodate. He is also worried about his anger outbursts that cause destruction of their home.
	Personal interests and values (p. S7)	Joe has been a Boston police officer for 25 years and takes pride in his independence and strength. He is a huge Boston sports fan, “Go Sox” and avid Irish Catholic. He values his relationship with his family, his friendship with Tommy and Donny, and providing for Rosie, now and in the future.
	The client’s occupational history/life experiences	Joe lives on the first-floor of his family’s three-story townhome in Charlestown, MA. He lives with his wife of 26 years, Rosie, and his youngest son, Patrick. His oldest son, JJ, and his wife live in the apartment above them and his two daughters live in the apartment above them. They all get together and have a family supper every Sunday. Hx: Diagnosed at age 44 with HD, mother died of HD. Two of four of his kids have been confirmed HD positive. Currently prescribed a neuroleptic for temper flare-ups by Dr. Hagler
	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)	Travis describes his current roles as husband, father, and friend. 8am-7pm Wake up Morning hygiene routine Watch news or Rosie’s recorded Oprah Go on a walk Work on the kitchen expansion if feeling up to it Go to yoga with Katie 7pm-10pm Eat dinner with Rosie Watch news or Red Sox game and drink a beer or two Nightly daily hygiene In bed with Rosie Since diagnosis, has a habit of using holy water to make the sign of the cross when entering and leaving his house to cleanse him of his sins.
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	No physical supports	Chorea affecting performance in ADLs
	Social	Strong family support system, Rosie is understanding of outbursts and has friends at work looking out for him.	Being described as drunk or on drugs in public by people that don’t know of his HD diagnosis
	Cultural	Expected to be sufficient in work activities and provide for his family. Strong Irish Catholic family	Was forced to recently quit his job at Boston PD and is only receiving 30% pension to support his family
	Personal	High school education, graduated police academy at age 19, middle SES	Still young at 44 but experiencing difficulties in ADLs that wouldn’t typically be experienced at this age. Difficulty coming to terms with it affects of HD
	Temporal	In his later stage of life with 4 grown children and 1 newborn grandchild	Has been given the “10-20” years to live post diagnosis
	Virtual	Has a cell phone to text and call friends and family	No virtual barriers
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’s number one goal is slowing the progression of his chorea. He values his independence and wants to prolong time without a walker or wheelchair. He also wants to be able to tell his kids and wife that he loves them in the later progression of the disease so working on mouth and jaw muscle strength is also on his list of goals. He is also dealing with lots of guilt associated with not knowing his mother died of HD and passing it on to his children without knowledge so some coping skills and stress management would be beneficial to Joe.