Inside the O'Brien's

Wow. What an incredible story. I will admit that I wasn’t necessarily looking forward to reading this book because I knew that it was going to be heart-wrenching. I knew I was going to cry a lot and its hard to be motivated to read something that you know is going to put you down. But, the reality of this book is that it is true and that it happens to people in our world. HD is real and I should be aware of it and know what it means to someone that has it or to someone that is at risk for it, more than just statistics on paper. I could potentially come across someone with this disease in my lifetime, although it is rare, and I now feel more apt to be able to understand and empathize to a deeper sincerity with that potential person.

There are so many things I love about this book that can be applied to any and every person on the planet. No one is promised tomorrow or the future, or even the rest of today. Everyone is at risk every single day and death is inevitable. We all know this, but I think until we are  face to face with death or the possibility of it, we somehow still believe we are invincible. Like Katie O’Brien said, “Every breath is a risk. Love is why we breathe.” We have to take into consideration the here and now and what we do have, not what we don’t have or what we won’t have someday.

Reading this book really opened my eyes to what HD is and what it means for all those involved. I gained perspectives from a person who is gene positive and symptomatic, gene positive and asymptomatic, those who are yet to know their fate, as well as those who are unaffected but deeply involved in the lives of those who are affected. I cannot imagine being in the position of any one of these family members debating what their next step is. Should they get tested and live with the fear of knowing what will happen or should they not get tested and live in fear of the unknown? Honestly, I have no idea what I would do in any of these situations. I also wondered how someone could have HD and purposely pursue having children. I realize now that its very possible that one doesn’t know that HD is in their family, nor do they even know what HD is! By the time you are symptomatic, your children are well into their late teens or early adulthood. I also can empathize with knowing and still wishing to have children, though there are other options.

In the beginning, everything seemed hopeless and full of despair, but as the story progressed, hope and light were found. Joe began to remember his mother in a completely different way. His memories were literally transformed and he could remember that his last interaction with his mother was loving and grateful. By remembering his mom for who she was and not just who she was with HD, he was able to change his tune and learn to live a life setting an example for his children. He almost gave up. He could’ve given up and lots of people do, but he was able to recognize the opportunity to continue to teach his children with what control he had left over his decisions. If he had chosen to end his life, he would’ve taught his children that was the only way out of this situation. The author did an amazing job of portraying the characters with their thoughts and language. I felt like I really knew the kind of people they were. They are everyday people. They are people like me.

I am grateful for having read this book and for the perspective I have gained on HD, as well as any other genetic, neurological, or degenerative disease. I have gained more compassion and understanding and increased my awareness of life with HD or life with a death sentence that you know the outcome to.

I hope to always find the good in situations as this family did and I hope to be always be compassionate and caring. More than anything, this book made me realize that we are all dying of something. None of us know when or how, but that’s all the more reason to make the best of everyday and spend it focusing on what is positive and what is there, because you are either Now Here or you’re NoWhere.

Occupational Profile

	Reason the client is seeking OT services and concerns related to engagement in occupations (may include the client’s general health status)	The client has been recently diagnosed with Huntington’s Disease (HD) and is concerned about safety and dealing with complications of HD such as the physical, cognitive, and psychosocial components.
	Occupations in which the client is successful and barriers or potential barriers to his/her success in those occupations (p. S5)	-Working as a police officer -Exercising -Doing ADLs and iADLs independently HD presents potential barriers in all of these occupations, especially as time progresses.
	Personal interests and values (p. S7)	Joe is interested in continuing his career as a police officer. He loves the Boston Red Sox and is an avid fan of any Boston sports team. He values being a father and husband, but his main identity is found in being a cop. He and his wife are of Irish decent and Catholic faith. His wife is more guided by faith than he is.
	The client’s occupational history/life experiences	Up until the time of his diagnosis, Joe lived a normal, healthy life. His mother died of HD when she was in her early thirties.
	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)	Joe wakes up early in the morning most days of the week to go to work as a police officer. He works most weekends and sometimes works very long days getting home late in the evening. Three of his four kids live at home with them in their three-level home. The family enjoys Sundays upper every week where they all get together for dinner and fellowship.   Some of Joe’s roles include police officer, father, husband, and friend. Since the onset of Joe’s HD, his anger outbursts and chorea have been a hinderance to his occupational performance. Going to work is still possible at this point for Joe, but eventually it won’t be due to the chorea and psychosocial and cognitive changes. His anger outbursts have also affected his relationships, although now it is understood why the outbursts were occurring. The fact that Joe has a wife unaffected by HD is a support to his overall situation because he would eventually be dependent on someone.
	Aspects of the client’s environments or contexts, as viewed by the client (p. S28)	Supports to Occupational Engagement:	Barriers to Occupational Engagement:
	Physical	Joe and his wife live on the first level of their home, so when movement becomes more of an issue, they will have that support.	It is not ideal that the family has to search for a parking spot each time they come home and then potentially walk uphill to get to their home. This will become increasingly more difficult for Joe and his family to deal with.
	Social	Fortunately, he has a few good friends that are on the police force with him that he can trust and talk to about what is going on with him. They understand and help hold him accountable while on the job.	Joe’s mother died of HD and everyone in town assumed she was a drunk put away at mental ward. He is afraid that when his disease progresses and his symptoms get worse, that he will be labeled the same as his mother and that people of their town would not know the real reason. He doesn’t want his story to end the way his mothers did.
	Cultural		Joe is a police officer and a manly-man that takes care of his family. When he is no longer able to work because of HD, it might affect the way his community looks at him if they are never made known of his diagnosis.
	Personal	Joe has a very patient and supporting wife. He gets down on himself for his outbursts and physical mishaps but his wife understands and is there to help.	Joe finds out that at least two of his children have HD. This is a huge barrier to his personal battle with the disease. He feels responsible and guilty for passing this on to his family unknowingly.
	Temporal	At this point, Joe can work and live his life in a somewhat normal way. He isn’t experiencing the psychosocial component yet, but is experiencing some physical and cognitive changes. He can still ambulate and do self-care tasks independently.	Joe’s current state of independence and being is short-lived. He knows that all of his symptoms are only going to get worse and this weighs on his mind.
	Virtual	Technology is continually improving, so there are adaptations and equipment possible for Joe when his symptoms do get worse.
	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 wants to set a positive example for his children on how to live life with HD. -He wants to be in his grandchild’s life. -He wants to continue to do self-care tasks and ambulate on his own independently while he can. -He wants/needs to be safe in ADLs and iADLs. -He wants to live his remaining days being as happy and positive as he can be.