Inside the O'Briens

Inside the O'Briens is a powerful novel written by Lisa Genova describing the effects of Huntington's disease on a family. The book follows the progression of this genetic neurodegenerative disorder from symptoms to diagnosis and beyond in a man named Joe O'Brien, and shows the impact on his family including a positive genetic testing for two out of his four children. This novel is both medically accurate, but also heartbreaking to see how terrible this disease is in a relatable way. I think this book personally affected me, because I am entering the field of occupational therapy, where I have the potential to work with clients with this disease, or similar ones, and it definitely helped me see more than the symptoms on paper and how they actually affect the people involved. One of the things that was particular moving to me was the impact of this disease on the psychosocial aspect of those diagnosed along with their family. This was especially noticeable for children of parents who have Huntington's, as they have a 50/50 chance of being diagnosed themselves. Interestingly enough, 90% of people who have parents diagnosed with Huntington's choose not to find out, but both knowing and not knowing have their own consequences. For those who choose not to know, there is always the question of whether or not they will develop the disease. However, those that do find out and test positive will see every possible symptom as the onset of the disease and feel as though they are running out of time. The perspective I considered the least was those who find out that they are gene negative. While this is good for them, it often comes with guilt that they have siblings or parents who have this disease and they do not. From all of this, I learned the importance of compassion to the client and their entire family if I ever work with people with this disease. Though there is no cure yet, it is important to help all of these people live the best lives that they can, and OT plays a huge role in that.

References:

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

 

Joe O’Brien

DOB: unknown, age 44

Date of Report: 4/19/18

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)	Client has recently been diagnosed with Huntington’s disease. He reports difficulty with his job, occasional falling, and trouble with coordination. His wife reports outbursts of anger. Aside from this, client has always been healthy.
	Occupations in which the client is successful and barriers or potential barriers to his/her success in those occupations (p. S5)	Client is a police officer, which has several job requirements. He must stand in formation, be careful and responsible with a gun and a car, and do paperwork. He reports difficulty remaining still and balancing for the first two tasks, and trouble organizing and conveying thoughts with the paperwork. He wants to continue exercising by running and walking his dog but often falls. He also wants to maintain independence around the house so as not to burden his family, but struggles often with self-care.
	Personal interests and values (p. S7)	Client values independence, family, loyalty to the police force, remaining active, and baseball.
	The client’s occupational history/life experiences	Client lives with his wife, four children and daughter-in-law in a 3 story house. He lives on the first floor, and also has a dog. Client has worked in the police force for 25 years, and has not been sick until this point. The temper outbursts have been happening for around 7 years, but the motor deficits are a recent development. Client is responsible for working as a police officer, being a husband and father, and walking the dog.
	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)	Client is a husband, father, police officer, and baseball fan. His routine changes daily based on his work schedule, but typically involves him working long hours, then returning home to eat with his family and watching TV before going to bed. As time goes on, he spends less time at work and more often at a bar drinking, and he is often forgetful of plans that his family has. He tries to spend time with family though, outside of work which is a good support system for him.
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 the first floor of his house already.	Client’s pet is getting older which causes stress.
	Social	Client lives with his family, and has a built in support system with his two best friends at work.	Because he is so close to his family, the genetic diagnosis is even harder to hear.
	Cultural	Client has a religious family, but has not participated much until now, when he finds praying helpful to him.	Client often feels pressure that the culture of where he lives looks down on the fact that his symptoms resemble alcoholism.
	Personal	Client is 44 years old, has a high school degree, has been married for 26 years, and a father for 26 years. He has been in the police force for 25 years.	Client is a hard worker, so is struggling with the fact that he can no longer do many of the things he once did.
	Temporal	Client received his diagnosis much later than many do, allowing him to watch his children grow up.	Client has not been working long enough to get the pension to support his family once he is gone.
	Virtual	Client’s working has always been completed on a computer, allowing him to submit his paperwork.	Problems with executive functioning have caused client to have trouble with using a computer.
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 maintain his independence for as long as possible. He wants to keep being able to work if he can and to exercise. He also wants to set an example for his children about how to live with Huntington’s. He wants to be the best father, husband and grandfather that he can with the time he has left and also to work on controlling his temper and self-care.