Inside the O'Briens

Reading Inside the O’Briens by Lisa Genova has been extremely beneficial to my learning process in Neurological Aspects of Occupational Performance. It has given me an insight to the impact that a diagnosis may have on an individual’s relationships. It is important and interesting to learn about the symptoms and treatments of each neurological disorder. However, as occupational therapists it is essential to think beyond just symptoms and treatments because we use a holistic, client-centered approach. Inside the O’Briens is a good reminder of all the “behind the scenes” emotions and conversations that unfold when an individual receives a diagnosis such as Huntington’s disease. While the story of the O’Briens is fictional, it is realistic and unfolds in a way that makes the reader think about how this would affect any family.

The conversations that took place in this story gave me a deeper understanding of Huntington’s Disease, the process of being tested for the inherited gene, and the ways in which one’s relationships may be effected. Specifically, I really admired the discussion between the doctor and Joe about research. This took place immediately after Joe and his wife had learned that he has HD. The doctor proposed the option of participating in an ongoing research study and although Joe’s wife was hesitant, he agreed immediately. He said that he would cut off his own head and donate it to science if it meant that it would save his children. Joe explained to his wife that if there’s no cure for this now, then how are they ever going to find one if they don’t have any guinea pigs? I thought that this was so brave and rational, especially for just receiving a diagnosis! Furthermore, the O’Brien children’s discussions of whether or not they wanted to be tested for the gene felt honest and realistic. One of the daughters stated that she felt like knowing whether or not she had the gene would give her some sort of control in this miserable situation. 

Finally, I was especially interested to hear the questions that the doctor asked Katie (one of Joe’s daughters) when she was going through the process of being tested for the gene. Katie thought that negative test results would lead to all the weight being lifted off her and that she could move on with her life, but the doctor made a point by saying that it wouldn’t be easy either way. He asked Katie if she were to receive negative results how that would impact her relationship with her siblings who had tested positive. At one point, Katie asked the doctor what he would do if he were her, and he stated that he wasn’t there to influence her decision. He said that he would not deny her the test, but he wanted to process the potential impact of every possible outcome. I thought this was admirable and I finally understood the process better. When learning about being tested to see whether an individual inherited HD, it can sound almost like a hazing process- determining whether the individual could handle the results. When in reality, the drawn-out testing process is structured to support the individual in ensuring that they are making the right decision in their own context.

Below you can see my example of an Occupational Profile on Joe O’Brien:

Occupational Profile

Client: Joe O’Brien (DOB: unknown, client is in his mid 40s)

Date of report: 4/22/18

Client report	Reason the client is seeking OT services and concerns related to engagement in occupations (may include the client’s general health status)	Client is experiencing confusion, muscle twitches, and an uncharacteristically bad temper which is interfering with his engagement in work, exercise and familial relationships.
	Occupations in which the client is successful and barriers or potential barriers to his/her success in those occupations (p. S5)	Client is successful in being a Boston Police Officer. His recent inability to arrive on time and fill out reports accurately is now interfering with his job. His muscle twitches are also interfering with his work performance because coworkers and people on the street think he may be drunk or using drugs. Client is also a loving husband & father but his aggressive outbursts and denial of symptoms is causing tension in his relationships.
	Personal interests and values (p. S7)	Client takes great pride in his work as a Police Officers. He likes to remain physically fit, specifically by running up & down bleachers. Client is very interest in sports. He values his independence and does not want to be a burden to his wife.
	The client’s occupational history/life experiences	Client’s mother died from Huntington’s Disease (HD). This was not understood until recently- he was under the impression that she died from alcoholism. He suffers from knee pain regularly. Client has been a police officer for the past 24 years. He takes his job very seriously and is close with his coworkers. He lives with his wife, dog, and 4 children in an apartment arrangement. The 4 children are in their 20s. He lives on the ground floor. Parking near the home can be challenging, sometimes has to walk far.
	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)	Roles: police officer, father, grandfather, husband, friend Daily routine: wakes up, eats breakfast, grooms himself, gets dressed in uniform (including gun), goes to work, eats with coworkers on the job, goes home, watches the news, eats dinner with wife and sometimes children, goes to bed Habits: Client walks his dog regularly. This supports his occupational performance because he gets exercise & socializes with his family and neighbors Rituals: Client has Sunday dinner with his family each week
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	He is physically fit and generally healthy (just has one troublesome knee) Lives on the ground floor	Client’s job is physically demanding
	Social	Client has a good support system of family, childhood friends, & coworkers	Client feels embarrassed by his symptoms He has a very negative experience of his mother’s HD
	Cultural	Lives in a small, tightknit community	HD is not well understood by the general public His symptoms can appear similarly to intoxication which can be shameful especially on the job
	Personal	Has a “don’t quit” attitude Client is dedicated to & motivated by his work as a police officer	Doesn’t always feel in control of himself
	Temporal	He is experiencing symptoms later than the average age of diagnosis for HD (about 35)	A cure has not yet been found for HD
	Virtual	Enjoys watching the news & sports as a pastime Communicates with family & coworkers regularly on his phone	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)	Client would like to continue to work as a police officer for as long as it is safe. He would also like to be a positive force in his family by having minimal outbursts and showing his children how to live with HD.

Photo retrieved from: http://www.simonandschuster.com/books/Inside-the-OBriens/Lisa-Genova/9781476717791