Inside the O'Briens is a novel about a man named Joe who starts experiencing symptoms and is later diagnoses with Huntington's disease (HD). HD is a autosomal-dominant genetic disorder that has been said is like a mix of Alzheimer's disease, Parkinson's, dementia, and bi-polar disorder. Joe's symptoms included moderate to extreme fits of chorea, mood swings, and forgetfulness. After being diagnosed and explaining it to their children, the children are faced with the extremely difficult decision of whether or not they want to be tested to see if they have the positive gene for HD.
Two of the children, Meghan and JJ, tested positive for the gene, so they will develop HD at some point in their lives. JJ and his wife Colleen were pregnant at the time of Joe's diagnosis, and the process of having a child who could possibly develop the disease was very emotionally challenging.
Near the end of the novel, Joe's chorea was worsening and Katie had finally decided to receive the results of her genetic testing. The novel ended without explaining what happened to Joe or if Katie was gene positive to HD. As frustrating as it was, it leads me to believe that there could possibly be a sequel that tells the story of the O'Brien children and their journey with Huntington's.
Reflection
I honestly did not think I would enjoy Inside the O'Briens as much as I did! I have since become so interested in Huntington's Disease and how it affects families for generations and generations. The whole time reading, I kept thinking of how I would react if I were put in Meaghan or Katie's shoes and had a parent who had just be diagnosed. I would then have to shuffle with the decision of whether or not I would want to be tested for the gene. I could see the benefits and risks of each. If I decided not to take the genetic test, I think I would live my whole life thinking everything was a symptom. Any bit of forgetfulness or mood swing I may take out of context and assume I am developing symptoms of HD. On the other hand, if I decided to get tested and the test was positive, I would have a timeline for my life. I would know that at some point, my life would no longer be my own, and I would be subject to a time of being completely dependent for all self-care activities. But at least with the latter option, I would know what my life would be like and could decide whether or not to bear children.
This book definitely opened my eyes to the disease of Huntington's that I had not previously known. I have become so enthralled in learning and studying about the disease and those who are suffering from it. As a future occupational therapist, I feel like I have gained some insight on how to work with those with Huntington's and provide their caregivers with knowledge on how to best help them function in day to day activities.
Joe O'Brien's Occupational Profile
Client Report
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Reason the client is
seeking OT services and concerns related to engagement in occupations (may
include the client’s general health status)
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Client has Huntington’s Disease. Experience chorea which
is getting progressively worse, mood swings, forgetfulness, disorganized,
easily frustrated, losing weight rapidly
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Occupations in which the
client is successful and barriers or potential barriers to his/her success in
those occupations (p. S5)
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Successful in dressing, eating, self care, walking dog
Barriers: getting out of bed, standing for long periods of
time, standing after sitting for too long, struggling with accurately filling
out paperwork at this job
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Personal interests and
values (p. S7)
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Enjoys walking the dog, watching Red Sox baseball, family
centered, loves to watch his daughter Meghan do ballet, loves to relax and
wind down after work and have a beer or two
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The client’s occupational
history/life experiences
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Boston Police Officer, married to a loving wife, has 4
children and a daughter in law and grandchild, mother also had Huntington’s
disease
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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)
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ROLES: Father, Husband, Friend, Boston Police Officer, Red
Sox fan, New Grandfather
ROUTINES: Wakes up, Walks dog, goes to run the stairs in
the park, goes home to get ready to work the third shift, dresses for work, gathers
all necessary gear, works, returns home, eats dinner, watches TV, prepares
for bed, sleeps
HABITS: Drinking excessively when he gets emotionally
overwhelmed, becomes violent and destructive during some of his mood swings
RITUALS: After diagnosis of Huntington’s disease, stops
every time before he leaves his house to pray and bless himself with Holy
water
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Context
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Aspects of the client’s environments or contexts, as
viewed by the client (p. S28)
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Supports to
Occupational Engagement:
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Barriers to
Occupational Engagement:
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Physical
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Lives on the first floor of his home
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Home is 3 stories, Neighborhood is very busy and often
cannot find parking in front of his house- sometimes has to walk blocks
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Social
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Very supportive family that he values greatly, his
workplace provides a stress unit after stressful events, daughter-in-law is a
physical therapist and is familiar with HD
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Tries to hide his symptoms from his family because he
doesn’t want to worry them, Stressful job that sometimes causes conflict
between his family because he often misses important events
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Cultural
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Not overly religious, believes in heaven and hell, turns
more to prayer as his disease progresses and as his children start getting
diagnosed to help cope
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Job culture as a police officer sometimes requires him to
stand for hours on end and work overtime, worried about other people finding
out he has HD and judging him as a drunk
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Personal
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Mid 40s, Boston police officer, Middle Class
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Living off a Boston police officer’s salary, client states
“We aren’t wealthy but we get by” so they may not be able to afford expensive
treatments or modalities, when his symptoms started showing at work, his
pension threated to be taken away
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Temporal
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Spends time with family, working, enjoying baseball games,
and hanging out with friends at the bars
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Client realizes Huntington’s disease is fatal and that his
time is limited
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Virtual
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Family has access to technology such as television and
iPhones
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Internet can be used to look up different symptoms and
story’s of HD which can lead to depression or worry about what is to come,
sometimes forgets to check his phone to let his wife know if he has to work
late
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Client Goals
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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)
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Client needs to be able to manage his symptoms as long as
he can. Client would like to work on swallowing and speech because he knows
that will decline over time. Client would also like to learn how to maintain
control of his voluntary movements. May also be useful to communicate with
caregiver to help her in preparation and care when the disease becomes debilitating.
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