Huntington's Disease aka the Monster

I just finished the book, Inside the O’Briens by Lisa Genova. It was amazing. I do not know why I let myself forget how much I love reading books. This one was about Huntington’s Disease. In case you do not know what that is, as neither did I, it is a hereditary disease that slowly deteriorates your brain. It happens over the course of 10-20 years. It is always fatal. Basically, if one of your parents have it, you have a 50% chance of having it. You can get tested to see if you will get it, but you cannot cure it. This disease changes your personality, in return for anger and obsessive compulsions. It takes your fine motor movement, in exchange for involuntary spasms strong enough to break the toilet seat. It allows you to function cognitively, yet, takes away your ability to do so physically. I would not wish this on my worst enemy. Or anyone. Ever. And the psychological toll of this progressive physical deterioration is even worse.

In all honesty, I am so happy I bought the audio version because I cried the whole last 5 chapters. (I could not have kept reading with the tears in my eyes.) It was heartbreaking. As indecisive as I am, I would not know how to handle the situation. In the beginning I thought I would not wanted to know whether I had the gene or not. Then, towards the end of the book after the conversation between Megan and Katie, I changed my mind. The situation every single family member is in individually is absolutely cruel. But Joe O’Brien has it the worst.  

The worst was when Joe talked about his mother and how he was ashamed of her. In my mind, if I was the sick one, that is exactly what I would expect others to feel. I guess I hoped it was just me, but it is true. It does not matter if it is your fault, people, heck even your own children, will hate you for having a disease they do not understand. And now, it was Joe’s turn. Fate’s cruel joke. As if that was not enough, he also has the weight of knowing his children will also have to go through HD. And then leaving the woman he loves with dying children, no husband, and no financial support… could the situation get any worse??

Overall this was a very heavy book. In the end, the lesson I learned is that we cannot control what happens to us. What we  can control is our perspective on what happens to us. It makes all of the difference. As long as we are alive, we have to keep living. There is always something worth experiencing. There is always love. 

“Every breath is a risk. Love is why we breathe”

Source: Genova, L. (2015). Inside the O'Briens. New York, NY: Gallery Books.

Occupational Profile

Joe O’Brien | DOB: unknown 44 years old | April 21, 2018

	Reason the client is seeking OT services and concerns related to engagement in occupations (may include the client’s general health status)	The client is seeking OT services due to Huntington’s disease, more specifically the worsening in chorea (facial and body), obsessive compulsions, and cognitive decline (anger and depression).
	Occupations in which the client is successful and barriers or potential barriers to his/her success in those occupations (p. S5)	The client is having difficulties with everyday interactions like sitting near others and hugging because of accidently hurting the other person with the involuntary movements. The unpredictable spasms have also led to his license being taken away as it is not safe for him to operate a vehicle and his inability to feed himself independently. Joe is also exhibiting depression, frequent angry outbursts, and worsening in organizing his thoughts.
	Personal interests and values (p. S7)	Patient is a former police officer and likes feeling in control both at home and at the workplace. He enjoys spending time with his family, watching baseball, and walking his dog Yaz.
	The client’s occupational history/life experiences	Joe O’Brien is a 44-year-old man with Irish descent, 3rd generation in Charleston Boston. His parents have passed away, but he has one living sibling – an older sister, Maggie. His mother passed away from Huntington’s and (maybe) had a drinking problem, possibly secondary to the Huntington’s Disease. The client is married to Rosie, and they have 4 children together. They all live in a 3-story house, Rosie and Joe on the bottom floor. Prior to being diagnosed with Huntington’s the client was overall healthy except pain in right knee from previous accident. Since the diagnosis symptoms have been progressively worse, including chorea, problems with coordination, abnormal walking, increased muscle activity, compulsive disorder, anger, and depression.
	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)	Prior Huntington’s diagnosis – Joe O’Brien was a Boston police officer. He took pride in his diligent paperwork and loved the adrenaline from chasing wrongdoers; he was fond of being in control. In his free time Joe likes to meet up with friends Donny and Tommy for drinks and to watch baseball. He also likes walking Yaz, watching his daughter dance, and spending time with his wife Rosie. Progression of Huntington’s symptoms (especially chorea) – the client is unable to comfort and express emotion via physical touch because of the chorea. He has accidentally hurt his family members numerous times (ex. black eyes, bruises punch in ribs, slaps in the face). Joe is also breaking things due to the spasms. Because of the unpredictable spasms and lack of proprioception the DMV has taken his license away deeming it unsafe for other people on the road. Now Joe needs to be driven around by others. He has become dependent on his family for transportation, anything that is not in walking distance.
	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 has lived in the same house, neighborhood, and city all of his life, so it is very familiar. Bar and dock are in walking distance.	The hospital and therapy appointments are far away.
	Social	Supportive family and friends. Knowing that HD is a fatal disease, Joe has been working on his relationships and has been more honest and unafraid to express himself.	His family is also going through a lot, (meaning dealing with themselves having it or the chance of having HD). His ability to communicate is declining.
	Cultural	N/A	Society as a whole is very unaccepting towards individuals who grimace and have noticeable disabilities.
	Personal	He has strict training from police academy that he can apply to coping with HD. Joe uses the love for his family as motivation.	Middle/lower socioeconomic class. Men are not expected to show emotion when coping. As a former police officer, it is hard for Joe to accept that he cannot help Boston anymore, and that he needs help instead.
	Temporal	Lives in a time when there is medicine to treat the symptoms to a certain degree. Also lives at a time when the cause of HD is discovered – able to understand it is not his fault.	Live in a time when the cure for Huntington’s is not found.
	Virtual	Can call and text others when in need.	N/A
	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)	Short term priorities/desired outcome is for client to be able to lessen the HD symptoms especially chorea, to maintain cognitive functioning, and improve depression and anger outbursts. Long term goal is to progress though the stages of HD as easily as possible for him and everyone around him, and to set a good example of how to deal with HD to his affected children.	N/A