"Inside the O'Brien's" Reflection

"Inside the O'Brien's" was such a touching book and I am so happy I had the opportunity to read it, especially as we learn about Huntington's Disease.  Throughout the story, I oddly found myself laughing which was a weird sensation but I love the dry humor the author still applied considering the circumstances of what Joe and the family were going through.  There were many events leading up to Rosie wanting Joe to go to the doctor because things were just really off.  Getting dressed one morning, he couldn’t find his gun anywhere and was convinced his wife or kids hid it from him or misplaced it but no one had placed it where it was found.  During this incident, he expressed extreme rage to his family that took everyone aback.  Pouring drinks into the dinner glasses one night, his grip completely gave out and the glass pitcher shattered on the table with everyone looking around in confusion.  While working, he staggered getting out of his car one day and fell and one night he struggled formulating a police report as he’s done for years.  The reports come back rejected and take him hours to do.  As he directs traffic one night as he has many times, his legs began tremoring without his voluntary movement.  The chorea was the worst he had experienced while he was trying to participate in a drill with his fellow officers and lost all control over his movement.  With each incident, he blamed it on his knee or stress at work or anything he could think of.   I loved how the book gave such descriptive, real descriptions of how Joe  and Katie felt as he was waiting to see the doctor, while being assessed there, and after he left.  I related it to OT in how when we perform MMT or ROM exams, people probably feel annoyed by such seemingly easy and small tasks that in reality tell us so much about where they are functionally.    I was overcome with emotion once they got the positive HD results, told the kids, found out JJ is positive while Colleen is pregnant, and as Katie reads the quotes newly written on her walls after finding out Meghan is also positive.  A powerful part of the book to me was when Katie was sitting on her vanity staring at her bare face and "looking for Huntington's" as she described it.  She shares so many features with her dad so she knew she must have it.  Throughout the story, we learn about Joe's mother and how she was known to have drank herself to death.  As Joe lives with his HD diagnosis, he sees himself turning into his mother and how sometimes his chorea does make him look drunk.  He remembers his mother in a facility, weighing less than 100 pounds, being spoon fed, wearing a helmet, fully relying on the assistance of a professional.  Each day he can more clearly see himself as his mother in the near future and he feels so much pain for his children who are also HD positive or haven't been tested.  As his driver's license is stripped, he can't work in ways he used to be able to, and when Yaz passes away Joe really begins to spiral.  He feels as if it's inhumane for him to have to live on this earth as a purposeless body when Yaz was able to peacefully exit the earth once "it was time."  He feels he can't do this anymore and grabs his gun right as Rosie enters the room and sees what he's planning on doing next.  When Rosie tells Katie about the incident and Katie confronts Joe, she tells him how they don't know anyone else with HD and they need to learn how to live and die of HD so they need him.  Joe's fire inside begins to spark as he revisits all of his memories of raising his children and how she is absolutely right.  The book addresses an interesting dynamic where Rosie, who has always been the spiritual half to their relationship begins doubting God because he did this to them while Joe begins his spiritual journey and reconnects with his sister.  The readers were introduced some more changes like when Felix went to Portland, Meghan decides she's moving to London, and Patrick announces he is expecting a child.  Although these things were brought up briefly and we were able to see Joe reflect on these major things, the book ends with the entire O'Brien family, plus Felix, in Eric's office awaiting Katie's genetic bloodwork results.

It was unfortunate that we didn't get more closure on what happens with this family we've learned so much about, so much that I feel like I know them.  I'm in high hopes that another book is in the making to discuss the remainder of Joe's story as well as JJ, his child, Meghan, Patrick, his child, and Katie's life over the next chapter of life.  Although I did find the ending to be suitable since we were along the journey of her going back and forth about if she wanted to know and how common this rollercoaster actually is in reality.  When I first saw that 90% of people who are at risk for HD choose not to get tested to find out, I felt such mixed emotions on that.  Like, how could you not find out, risk reproducing, and your children getting it too?  However, I feel so differently after completing this book.  I never knew the extensive psychological process one must withstand before even being allowed the bloodwork test.  With this story, we were shown on one hand, the anxiety Katie faced about knowing or not knowing for hers and Felix's sake and the certainty of JJ that he wanted to know as soon as possible since they were expecting.  Coping with such a thing can be so different even for siblings and it is ultimately a personal decision if you want to find out you are positive or not.  Towards the end, we get a short look into Joe's PT sessions and how they were working on his strength to improve his gait.  I always enjoy seeing a patient's perspective on treatment because it helps me further understand their thought process.  This book provided an in-depth, emotional way to learn about HD and I know so much more about this disease than I ever have before.  We were given a real-life interpretation of the mental and psychological battle this defective gene puts a person and their family through and how it can either tear you apart or make you appreciate what you have for the remaining time left!

Joe O'Brien
DOB: unknown
Date of Report: 4/22/18

Occupational Profile

	Reason the client is seeking OT services and concerns related to engagement in occupations (may include the client’s general health status)	He has seen a decline in his paperwork for his job and the inability to stand still and control movement at work and home.  Notices a sudden, short temper and lack of patience which is affecting his home life with family.
	Occupations in which the client is successful and barriers or potential barriers to his/her success in those occupations (p. S5)	He is successful in arrests and pursuits in the field as a police officer but struggles with the desk work.  He enjoyed running and yoga with his daughter but really struggles with the progressing chorea.  He enjoys being with his wife and children and overall being a police officer, but his spasms and short temper are interfering with everything he enjoys.
	Personal interests and values (p. S7)	Boston Red Sox baseball, leisure time on the couch after work, a couple of beers each night, Sunday meals with his family, financial supporter in his family, wife practices Catholicism
	The client’s occupational history/life experiences	Lives on first floor of 3-story style home and parks on street wherever is available, sometimes far away from his home. Recently tested positive for Huntington’s Disease and found out his mother passed of HD.  Spasticity is random and completely out of his control.  Social participation greatly decreased after getting positive HD diagnosis due to coping and grief.  Duties in the home include any repairs, financial support, spending time with wife.  Duties on the job consist of pursuits and arrests, paperwork at his desk, driving to and from, and standing for long periods of time to direct traffic.
	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 include father, son, brother, police officer, and husband.  He wakes up, gets ready for work, finds out what his day will consist of once he’s out on his patrol around town, typically gets home in the late evening if he doesn’t have to work an event, has a couple of beers while he relaxes on the couch, eats dinner with his wife, and goes to bed.  On Sundays, his children all come over for dinner.  Some nights he must stay at work late to finish his police reports or control traffic after a big baseball game or concert.  He enjoys running and being with his wife and his kids.  Occasionally will go out with a few of his coworkers to a bar.  Once his work hours were cut back, he began running and doing yoga with his daughter when he wasn’t watching tv.
	Aspects of the client’s environments or contexts, as viewed by the client (p. S28)	Supports to Occupational Engagement:	Barriers to Occupational Engagement:
	Physical	Drill sergeant gives him several opportunities to remain still, so he eventually can.  Yoga helps his coordination in the moment.	Chorea impairs his ability to perform a drill at work and run up the stairs.
	Social	His walks to the park allow him time to socialize with old friends.	No longer goes out with his coworkers since he doesn’t want them to know about his HD so he can keep working.
	Cultural	Wife cares for him in any way he needs – physically, mentally, emotionally.	Soon he will no longer be able to work and support his wife
	Personal	Sunday dinners with his family encourage him to be in the moment.	Negative thoughts about not seeing his children and grandchild grow.
	Temporal	Seroquel dampens his temper as does Rosie’s gentle embrace and patience.	His moments of rage are uncontrollable and make him feel possessed by something he isn’t.
	Virtual	He enjoys himself when he is watching the news or Red Sox on television.	His ability to text message has become a struggle with the tremors.
	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 try to walk without relying on a walker full-time, work on some home improvements to better home for his wife, to cope with his grief and anxiety so he can be there for his kids.