Inside the O'Briens

Spoiler Alert: I highly recommend reading the book titled "Inside the O'Briens" by Lisa Genova before reading this post :) 

In her book titled Inside the O’Brien’s, Lisa Genova brings her readers in to the life of Joe O’Brien, a Massachusetts police officer diagnosed with Huntington’s Disease. Like most people, Joe had never heard of this disease before his diagnosis, and he chalked up his symptoms (mood outbursts, falls, clumsiness, muscle soreness) to stress from work and a past knee injury. The onset of symptoms usually comes in the 40’s or 50’s, so sadly the symptoms of HD are easily overlooked or attributed to other factors, such as stress, lack of sleep and aging. Another troubling characteristic of HD is its genetic factor. As Joe found out after his diagnosis, children of parents with HD have a 50% chance of inheriting the gene ad developing the disease themselves. Because the disease usually shows itself in middle adulthood, people with HD usually are not aware that they have it until after they have children, to whom they might have unknowingly passed on the gene. In Joe’s case, he and his wife had four children, who now have to wrestle with the weighty decision of whether or not to be tested for the HD. In the book, we walk alongside Joe and his journey with HD, as well as his daughter Katie. Much of the book is written from her perspective, as she faces the challenges that come along with her father’s diagnosis and her sibling’s struggles with the genetic testing decision. She watches her siblings grapple with the difficult choice, she and sympathizes with her sister, Meghan, after she discovers that she is gene positive. Meghan is a professional ballerina, so the news is even more disheartening in her case. Her days as a professional dancer are numbered, and any slight error in her routine convinces her that the symptoms are already starting. Katie watches her father, a formerly tough Boston police officer, wilt into depression, anger, and even suicidal thoughts. In one of my favorite parts of the book, Katie confronts her father. She finds out about his struggle with suicidal ideation, and she pleads with him to not let Huntington’s win. She tells him that all of his children are looking up to him as an example of how to live courageously and with dignity in the midst of the ugliness of HD. Joe decides to take her advice and embrace the new life he has with HD, even ordering some T-shirts that say, “This is Huntington’s.” I was inspired by how a new perspective can so drastically increase quality of life, not just for someone with HD but for their family as well. Rejoice in what you have, instead of grieving over what you do not. This view of life can (and should) bleed over into any life situation. 

The more I learn about neurodegenerative diseases throughout my coursework, the more I realize that there is so much more to every disease than it seems at first glance. With Huntington’s in particular, it is not just about the jerky movements disrupting your life. There is a psychological side as well as a cognitive side to it. While this disease is cruel and takes life away far too early, it does not mean that those with HD cannot live fulfilling lives. This is yet another area that I was unaware that OT could impact. OT can help to minimize the impact of HD on clients and their families and can help maintain independence for as long as possible. As I walked through the journey with Joe and his family, I felt everything from anger, sadness, frustration, and hope. But I also felt very thankful that my profession can step in and make a difference for families like the O’Briens.  

Occupational Profile

Joe O’Brien

                                                       DOB: unknown, 44 years old

	Reason the client is seeking OT services and concerns related to engagement in occupations (may include the client’s general health status)	Client is having difficulty with driving, work, and coordinating tasks/falling. Client initially believes symptoms are due to a past knee injury and/or stress from his job as a police officer (later learns they are due to Huntington’s Disease). Occasional mood outbursts noted by client’s wife. Client is healthy otherwise.
	Occupations in which the client is successful and barriers or potential barriers to his/her success in those occupations (p. S5)	Client experiences difficulty with driving and engaging in work duties (typing up reports). Client’s fear of being put at a desk job is a barrier, as he does not want to open up or admit to his driving difficulties. Client is successful in self-care tasks.
	Personal interests and values (p. S7)	Client believes in hard work and justice (police officer role). Client is passionate about local baseball team. Client’s family (wife and four children) are very important to him. Client struggles with realization that children have 50% chance of inheriting HD from him.
	The client’s occupational history/life experiences	Client’s mother died during his childhood, originally thought to be because of alcoholism but in reality was because of HD.  Client lives with family (wife and four children) in a 3-story house. Primary work duties include driving a police car around town to monitor safety of citizens, occasionally monitoring security at baseball games, typing up reports. Home duties include providing for family, enforcing home rules, walking the dog
	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, coworker Routines: wake up, go to work, patrol during the day, type reports, go home, eat dinner, spend time with family/watching tv Client is having significant difficulty completing reports for work (forgetting, working slowly, not making sense) Client also struggles coordinating routine tasks, which negatively affects his performance at work His temper outbursts also put stress on his relationship with his wife  Habits: Client walks dog occasionally, which has become more difficult as he fears falling; client usually has a beer at night
	Aspects of the client’s environments or contexts, as viewed by the client (p. S28)	Supports to Occupational Engagement:	Barriers to Occupational Engagement:
	Physical	Client has dog that he enjoys taking care of	Dining room is crowded during family dinner (Sunday nights), and this causes client frustration at times
	Social	Client has supportive family at home and close coworkers to confide in	Struggles to open up to coworkers and even children about difficulties
	Cultural	Client's work as a police officer have given him a tough mental mindset that can help him deal with the diagnosis	Client’s workplace expectations with other police offers is to be tough; client does not want to show weakness or be judged for his clumsiness
	Personal	44 year-old male, police officer, father and husband	Client is resistant/hesitant  to go to any type of doctor Client does not want to admit that he is struggling at work out of fear of being fired or judged
	Temporal	Client is in middle adulthood, which is near potential retirement age and has had a good amount of life experience before his diagnosis	Client struggles with late-night work duties, due to both muscle and cognitive fatigue; Client’s diagnosis comes after he had children which means they have a 50% chance of carrying the gene
	Virtual	Client has cell phone that he can use to contact his wife whenever necessary	Client watches tv a lot while at home and this can sometimes be used as a distraction or coping mechanism for the stresses of life
	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)	Client wants to be independent in self-care and household activities He wants to be supportive to children/grandchildren who are facing uncertainty with their futures in regards to HD Client wants to be supportive for his wife who is at risk of losing multiple family members to HD