Inside the O'Briens Summary and OP Report

Inside the O' Briens

by Lisa Genova

Huntington's Disease is a genetic disease where nerve cells break down over time and there is no cure for this disease, eventually this diagnoses will lead to death. This is a cruel disease, and Genova uncovers the pain and reality of this disease in her book. This book stretches the reader to face the reality of Huntington's Disease and walk alongside a family that is faced with this genetic nightmare. I think what surprised me the most was the mind games that HD played on the family members. Before reading this book I would have just assumed that most people would get the tested to see if they were HD positive or negative. However, this booked showed a different side, we know that two of the four kids , JJ and Megan were HD positive. Katie, the younger daughter really struggles throughout the book to know if she has HD. By the end, the author leaves us in suspense to whether she has it or not. At first I was annoyed that the author left the end like that, but after thinking about it I think I understood why. This book aimed to shed a light on the struggle of HD, and the fact that the end result is death. Joe said in the book that everyone was going to die eventually " that was the price of playing poker". 

As OTs, it is imperative that we are able to step out of our own shows and put ourselves in the position of someone else. This book helped me step outside of myself and into Joe's shoes for just a moment. By reading this book I have such a greater understanding of what HD is and how it can affect family dynamics. When practicing, I will keep this in mind with clients that I will see. I do not want to be ignorant of the reality of this disease or any other disease for that matter. I would recommend this book to anyone because it paints such a beautiful picture of the realities of life and how we can better come alongside people and help them in their times of need.  

Occupational Profile Joe O’Brein, 43

	Reason the client is seeking OT services and concerns related to engagement in occupations (may include the client’s general health status)	His wife and coworker/ friend are worried about some different personality changes/ uncharacteristic traits that he has taken on such as fidgeting and clumsiness. Joe went to the doctor and was diagnosed with HD (Huntington’s Disease)
	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 and devoted husband father (of 4 kids). He has been showing signs of not being able to get work done efficiently, spending long hours at work.   Potential Barriers that could effect work with diagnoses: -          Mental function/ lack of concentration -          Abnormal walking/ involuntary movements -          Compulsive behavior
	Personal interests and values (p. S7)	Working, baseball, spending time with his wife and kids
	The client’s occupational history/life experiences	-He mother died of Huntington’s Disease (although he did not know this, he thought she was just an alcoholic) -He had some knee problems in the past -Has 4 kids, had them early in life
	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)	-He is working man and spends many hours on the job. He has dinner with his family on Sunday nights (wife, 4 kids, and daughter in law) -He shows signs of tripping over things and dropping items such as a pitcher of water, remotes, etc. - Roles: father, husband, police officer, friend, soon to be grandfather - with the onset of HD he unable to control some of his moods and work has become harder to stay focused - He wife (while obviously distraught by the diagnoses) stays by his side and supports his/ helps him along this journey
	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 an active police officer, has the ability to walk/work still	The symptoms are going to keep progressing which is going to not allow him to keep working
	Social	He has friends at his work who know about his disease and are looking out for him at work	He will not be able to continue to socialize/ work with the progression of this disease,
	Cultural	He is involved with his faith and God, and has a very devoted wife who is able to stand by his side during this process	This disease makes it hard to keep hope and faith, especially with his mood outbursts it makes it hard on his wife to stay strong
	Personal	He has a tough personality that will help him to push the best that he can through this diagnoses	Feels personal guilt that he brought this into his family and that some of his kids/ grandkids are at risk of HD
	Temporal	This stage in his life, he has had lot of good years, and lots of memories were made.	He and his family become very in tune to time, they are consistently wondering how much time is left and how much time is left.. this can be very draining on the family
	Virtual	Watches baseball/news in order to escape the reality of the diagnose	The internet has allowed him and his family to harsh reality of this disease, and sometimes knowing more can be harder to keep positive hope for the future
	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)	-To have as much independence/ mobility for as long as possible - try to be psychologically present as possible, I.e. keep his personality intact as much as possible —An OT could work on splinting in order to keep mobility and AROM for as long as possible, there could be preventive therapy as well to prepare Joe for what is to come with HD — Joe could keep a journal with encouraging memories and words from his family so whenever he feels as though his disease is taking over he can look back of all the good that has happened in his life