Inside the O'Briens Reflection

After reading Inside the O’Briens, I not only have a better understanding of what conditions go along with having Huntingdon’s disease but also of how this cruel disease impacts the lives of families. Throughout the book, the reader gets to truly experience the emotions and feelings felt by the members of the O’Brien family and how they change over the process of finding out who has the HD gene. Firstly, I found it interesting that Joe’s mother never told him that she was slowly dying from this disease. However, I imagine she held that information from him simply because she wanted him to be able to live his life without the anxiety and thought-controlling emotions that come with having a parent with HD and wondering if and when to get genetically tested for the gene. I also find it very interesting that everyone thought that his mother “drank herself to death”, only because many symptoms that go along with Huntington’s can seem like someone is intoxicated.

This novel was very effective in slowly showing Joe’s symptoms arise. He started by simply dropping and misplacing objects or stumbling occasionally, which didn’t seem abnormal, but then he became unusually forgetful and frazzled quite often. His symptoms begin to impact his job since he can no longer focus or remember vital details to write his police reports. He also is unable to stand still for long periods of time in training sessions for his job as a policeman. Joe’s wife Rosie becomes suspicious that Joe is an alcoholic or has a serious medical condition, so she advises that he go to a doctor. Through this process, this is how Joe finds out that he has the HD gene. This moment of the book led me to ponder how many people go through their lives never knowing they have the gene due to their parents never telling them they had it.

I thought it was very thoughtful of Joe to sit down with his wife and all four kids to tell them he has HD. I cannot imagine one of my parents sitting down to tell me that he or she had this disease. It truly turns each family member’s life upside-down and makes them question if they have been showing signs of the disease in the past or if they will in the future. There is also the major question of whether or not to get genetically tested for the gene. It definitely added to the scariness of the situation that JJ and Colleen were pregnant and didn’t tell the family until after Joe had given them the news that he HD. Through the process if each O’Brien child determining whether they wanted to get tested for the gene, I found myself trying to picture myself in each of their shoes and wondering what I would do in that situation. Meghan was fearless and went by herself to get tested immediately. JJ wanted to get tested immediately as well due to fact that he had a kid on the way. Patrick is absentminded in a lot of aspects, so his carelessness in whether or not to get tested was not abnormal. However, Katie definitely set the prime example for a family member who suffered a tremendous amount of anxiety and worry over what to do about getting genetic testing for HD. She looks at her brother and sister who ended up being HD positive, yet they do not let that limit their life in any way. JJ and his wife went through with having their baby, Meghan decided to move to London to chase after her dreams of being part of a dance company, and her dad has slowly defeated fear through his journey as well. I feel like seeing her family’s fearlessness in their journey is what led her to get tested as well.

This book has several heart-warming moments that truly left me inspired. One of those moments was when JJ and Joe want outside to smoke cigars after the baby was born, and JJ talked to his dad about how much he already loved his newborn child. In that moment, Joe realized how important love was and how he truly loved JJ and each of his children. Another special moment was when Meghan was talking to Katie and convinced her to get tested by encouraging her to not let this disease prevent her from living life to the fullest. However, all in all, my favorite moment was when Katie brought her entire family and Felix to the doctor to receive her results. It painted a beautiful picture of the unity within the O’Brien family and how they chose to fight this disease together. Even though the ending leaves the reader hanging as to whether Katie has the gene, I think the author did this to allow the reader to experience similar emotions that an individual would experience if they chose to simply never get tested. There is so much uncertainty but a strange peace that comes with not knowing your destiny so that you may live your life with purpose and cherish each day that you live. I cannot begin to fathom being a member of a family that been impacted by Huntington’s disease, but after reading this book, I feel that I will be better able to empathize with those who have HD or have a loved one who has it. As an occupational therapist, I will strive to encourage any clients who have HD to live their life fearlessly and to not let their diagnosis determine their outlook on life. I will strive to provide therapy that will increase their quality of life while also listening to them and being there for them on an emotional level. Inside the O’Briens was an inspiring and heartwarming read, and I would recommend that any health care professional read it in order to learn more about how this disease truly impacts a family.

AOTA OCCUPATIONAL PROFILE TEMPLATE                                  MADISON EVANS     

Client: Joe O’Brien         Age: 44       Report Date: 4/20/18

Reason the client is seeking service and concerns related to engagement in occupations	Why is the client seeking service, and what are the client’s current concerns relative to engaging in occupations and in daily life activities? (This may include the client’s general health status.) To minimize the daily impact of his diagnosis of Huntington’s disease and to maximize his independence and quality of life as much as possible. Client’s diagnosis has impacted his ability to interact with his children and wife, write reports and carry a gun as a police officer, carry out stable motor movements, remember certain tasks, and dress and feed himself.
Occupations in which the client is successful (p. S5)	In what occupations does the client feel successful, and what barriers are affecting his or her success? Client feels successful in parenting his children, doing yoga, sleeping soundly, and walking with minimal assistance. Barriers that have developed since his diagnosis of Huntington’s include being unable to drink out of a normal cup, walk down stairs in a stable manner, control his emotions and anger, or stand in one place or position for prolonged periods of time.
Personal interests and values (p. S7)	What are the client’s values and interests? Client values time spent with his kids and wife, being a police officer and protecting his town, being a role model for his children, and going to church/praying.
Occupational history  (i.e., life experiences)	What is the client’s occupational history (i.e., life experiences)? Client is a 44-year-old male who has recently been diagnosed with Huntingdon’s disease. His mother passed approximately 30 years ago from Huntington’s disease. He lives on the first floor of his three story, triple-decker home with his wife and adult son. His two daughters live two floors above them, and his second son lives in close proximity. Client has been a police officer for 25 years and receives great support from family and friends. Two of his children have been diagnosed with HD as well, but the other two are skeptical of getting genetically tested.
Performance patterns (routines, roles, habits, & rituals) (p. S8)	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? (Patterns can support or hinder occupational performance.) Roles: father, son, husband, police officer, brother, friend, coworker Routines: Starts morning by walking dog, eats breakfast and interacts with family, goes to work, patrols town in police car, writes police reports before leaving work, gets home, watches TV, and then spends time with family until going to bed. Client has family dinner night with children and wife every Sunday evening. Habits: Sprinkles holy water on himself before leaving house Changes made to routine: Difficult to walk dog due to chorea and altered gait, unable to drive, difficulty writing police reports due to decreased memory and focus, anger outburst and heightened temper has detrimental effects on time spent with family and friends
What aspects of the client’s environments or contexts does he or she see as:                                                Supports to Occupational Engagement             Barriers to Occupational Engagement
Physical (p. S28)  (e.g., buildings, furniture, pets)	Client lives on the first floor of his house, therefore there is no need to go up and down stairs.	Client usually walks dog each morning, but this task is getting more difficult due to his unstable gait and decreased tolerance for physical activity.
Social (p. S28)  (e.g., spouse, friends,  caregivers)	Client’s children and wife are very supportive of him (physically and emotionally) and are always available to help him in any way possible.	Client feels extremely guilty and responsible for his children’s destiny, especially with Meghan and JJ since they tested positive for having the HD gene, and this guilt has lead to increased depression and self-esteem.
Cultural (p. S28)  (e.g., customs, beliefs)	Client finds self-purpose and peace within himself by sprinkling holy water over his body before leaving the house.	Client is of the Catholic faith but is unable to go to church service due to the repetitive standing and sitting. Therefore, he goes to the sanctuary once the service has ended.
Personal (p. S28)  (e.g., age, gender, SES, education)	44-year-old male. Police officer for 25 years. Middle class.	As symptoms have increased, client is no longer in an appropriate physical or mental state to continue his job as a police officer. He is no longer allowed to be behind the wheel of a car or carry his gun.
Temporal (p. S28)  (e.g., stage of life, time, year)	Client states that his body is calm when sleeping at night, which allows his body to rest from spasticity and fidgeting that is present throughout each day. He claims that his body is “finally still” during that time.	During any period of time where client must stand in one place (such as when he directs traffic), his chorea increases which causes him to sweat and fatigue.
Virtual (p. S28)  (e.g., chat, email,  remote monitoring)	Client is able to communicate with his family via text and calling on his cell phone.	Client is obsessed with texting wife to see where she is and what she is doing at any point of the day. His decreased memory leads to his repetitively contacting her.
Client’s priorities and desired targeted outcomes: (p. S34)	Client wants to be able to increase his quality of life despite his diagnosis of Huntington’s disease. He also wants to be able to continue doing yoga, interact appropriately with his friends and family, renovate his living room and kitchen, and stay in a healthy condition for as long as possible to spend as much time with his children and wife. Client wants to set a positive example for his children and to teach them how to live with Huntington’s disease in a driven and confident manner. Client’s desired outcomes are to be able to maintain his balance and coordination as much as possible and to decrease occurrence of his anger outbursts so that he no longer puts his loved ones in danger by being around him.