Inside the O'Briens

Before this class, I had not heard much about Huntington's disease. I had heard the name before, but never quite understood what it was or the symptoms that accompany it. After reading Inside the O'Briens by Lisa Genova, I have a better understanding of what HD is and how it effects the individuals who inherit it. This book was incredibly eye opening to me, and gave me insight on what it is like to live with such a life altering disease. I enjoyed that Lisa Genova spent so much time painting a picture of what Joe O'Brien's personality was like despite being diagnosed with HD. I admired Joe's character, and how he constantly kept pressing on even while being fearful of the future. His love for his job, family, and wife never diminished even with the hardships HD brought upon him. The tight bond the family shared along with the support they provided for each other was inspiring, reminding me of how even in the darkest of times there is hope. 

I loved how the book was set up as well. While I would've like to have read from the perspectives of all of Joe's children as well as his wife, I enjoyed getting Katie's and Joe's viewpoints. Reading their thought processes through the situation made me feel as though I knew them on a personal level, and while I cannot fully understand what it is like to be in this situation I felt as though I could feel what they were going through. I liked that Genova followed Katie throughout the book and how she felt when finding out her brother and sister both has positive results for HD. I cannot imagine what it would be like to find out your loved ones were living with the fatal disease while also being afraid of having it yourself. I will say, I was frustrated at the end when I didn't get to find out what Katie's results were (I was so anxious to find out!). 

One part of the book that bothered me was when the doctor told Joe and Rosie that there was a possibility he had Huntington's disease. This put the idea in their head a month before they found out, causing them extreme anxiety! Her saying, "this could be Huntington's disease, but don't worry about that yet" made me so upset! It bothered me how un-empathetic the doctor seemed throughout this part of the book, and it made me feel for Joe and his wife. I also was disturbed that a neurological test was performed on Katie and she did not know what the purpose of it was even after it was completed. The whole time she did not know what the nurse was doing, until finally she asked and was told. Unfortunately, our healthcare system is often like this and I think that this is a call for it to be better. This is one of the reasons I love OT so much! There is such a focus on the client and making sure that things are well explained to them and that they understand the reason for assessments, interventions, and the desired outcomes. The doctor should have explained what HD is to Joe and Rosie and not made them fearful by putting this idea in their heads so early on before they had the test results.

I think reading this book made me better understand the magnitude of HD. Since it is such a rare genetic disease, there is a chance I will never work with someone who has it. Even so, I am glad to have read this book, especially if I one day have a client who is living with it. I now better understand what the signs and symptoms look like, and I feel as though I can better empathize with a client who has it. Knowing that this disease will continue progressing for years and that one's body will not be functioning as it used to must be a difficult thing to cope with. I am grateful to have gotten to read this book and to have more insight into how this disease effects people and their families. This book was a fantastic read, and I would highly recommend it to anyone!

Occupational Profile - Joe O’Brien

	Reason the client is seeking OT services and concerns related to engagement in occupations (may include the client’s general health status)	Huntington’s disease; makes engagement in work, housework, self care, and transportation difficult. Condition worsens over time (typically over 10-20 years after onset).
	Occupations in which the client is successful and barriers or potential barriers to his/her success in those occupations (p. S5)	Occupations: work (police officer), driving, socializing with family and friends, going on walks, pet care Potential barriers: some of the symptoms of HD may make participation in these activities difficult due to chorea, falling, anger outbursts, etc.
	Personal interests and values (p. S7)	Being independent, spending time with family and friends, working as a police officer, going on walks, watching sports (Red Sox fan)
	The client’s occupational history/life experiences	Symptoms started appearing around age 37 Diagnosed with HD at 44 years old Lives with wife and his four adult children Triple-decker home Stairs Primary home duties: cleaning, pet care, house maintenance
	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: husband, father, police officer, friend ROUTINES:  Wake up Morning grooming activities Drive to work Work Write up reports for the day Drive home Eat dinner with family (Sundays) Take dog on walk/ go on walk Nightly grooming activities  Go to sleep Works late some nights HABITS:  Has a habit of isolating self when worrying about HD progression.
	Aspects of the client’s environments or contexts, as viewed by the client (p. S28)	Supports to Occupational Engagement:	Barriers to Occupational Engagement:
	Physical	Doherty Park is a close walk to home which facilitates outings.	Going up and down stairs can be dangerous, as this can cause falls.
	Social	Family and friends can assist with the completion of daily activities as well as provide support.	Family members have jobs and cannot be around at all times.
	Cultural	Attends church sometimes, where prayer and church support for healing can be provided.	Job can require standing for hours, which can be difficult due to chorea and potential falls.
	Personal	44 year old male.	Client is expected to keep up with the daily demands of being a Boston police officer, which can be difficult due to the symptoms from HD.
	Temporal	While symptoms inevitably become worse over time, many measures can be taken to delay symptoms from appearing through therapy and medications to control anger outbursts.	Symptoms will become worse over time.
	Virtual	Television allows client to watch Red Sox games and keep up with sports.	Overtime may need assistive technology to complete ADLs, such as a power wheelchair.
	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)	Be able to take care of self independently. Maintain health and wellness. Delay symptoms as much as possible. Maintain strength, balance, swallowing, and speech. Reduce temper flare ups. Stay involved in children’s lives.