It was very sad, but interesting and inspiring to watch a family go through what they went through, and to see how each member of the family handled it in a different way. With Huntington's, there is no cure, but you can have a test done before you start showing symptoms to see whether or not you carry the gene. Some of Joe's children wanted to know, others didn't, and another who wasn't sure. To see how they weighed the pros and cons of finding out was something like no other, and is something I don't think anyone would fully understand unless they were in the situation, or a similar one. From a psychological perspective, it seemed emotionally draining to go through each day wondering if and when the symptoms were going to begin in some of the family members. To wonder if every little mishap such as dropping something or getting off balance was the beginning of the Huntington's cycle would take an emotional toll on anyone. To watch Joe go from being an independent, strong, unwavering police officer for the Boston PD to being someone that struggled with simply walking across the street was heart breaking.
However, there were times in the story where the family showed great support for one another. Huntington's can result in violent mood swings and personality changes, but this family was very understanding of that, and helped each other through the most difficult times. Reading the book from an OT perspective, I was constantly thinking about the types of things that Joe found meaningful and trying to think of ways that could be incorporated into therapy sessions for him. With any disease or disability, you need to find what that person loves to do, and what they find meaningful because then their life, which they might have thought was over or meaningless, suddenly becomes something that they want to do. They want to fight and push through the adversity, they want to overcome their disability or at least overcome some of the symptoms they can have.
Overall, this book gave great insight to what Huntington's disease is about. It gives a great description of the physical and mental setbacks and advances it can cause, and how certain people may cope with these changes. I would HIGHLY recommend this book to anyone. It is a great, easy read and it would be enjoyable to anyone, not just individuals who are interested in therapy or the medical field.
Occupational Profile
Client: Joe O’Brien
DOB: N/A He is 44 y/o
Date of Report: April
22, 2018 by MaKensie Bawcum
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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 is seeking to improve symptoms of Huntington’s
Disease because the symptoms are affecting work, driving, and social
participation
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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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Joe is successful in sleeping, personal hygiene, and dressing
with clothes that don’t have buttons,
The barriers Joe has includes: walking, holding onto
things, dressing/undressing with shirts that have buttons, remembering/organizing
things, proprioception, paranoia, anosognosia, and mood swings. Joe’s work is
affected because he is a police officer, and the chorea symptoms don’t allow
him to handle a gun, and he can’t fill out his reports accurately due to his
memory and organization issues. His driving is affected because of the chorea
as well, and his social participation is affected because of his change in
temperament, and mood swings.
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Personal interests and
values (p. S7)
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Joe enjoys walking their dog, he loves St. Patrick’s Day,
spending time with his wife and family, and he absolutely LOVES the Boston
Red Soxs
He values his career, his wife, and his family
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The client’s occupational
history/life experiences
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Joe lives in a 3-story home in Boston. He and his wife
live downstairs with their son Patrick, and their dog. His son JJ and his
wife and newborn baby live on one floor, and his two daughters Katie and
Meghan live on one floor. Joe has to park on the side of the street to get to
his home, and it could be a few blocks away. Joe is a police officer for the
Boston PD.
His main responsibilities include: taking care of his
family and wife, going to work, and walking his dog
Some of his family history includes: his mother had died
from Huntington’s disease, and after Joe had been diagnosed, they found out
that at least two of their 4 children were gene positive
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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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Joe’s roles include being a husband, a dad, a grandfather,
and a co-worker
Joe wakes up in the morning
Walks the dog
Eats breakfast with his family
Goes to work
Drives home
Eats dinner
Watches TV
Goes to bed
Joe also eats Sunday dinner with his family every Sunday.
Also, Joe has somewhat of an unpredictable work schedule. He may not be able
to come home at a reasonable hour, so this can throw off this schedule. Joe
also goes to the church sometimes to work out by walking the stairs
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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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It seems as though he can get around on the floor of the
home he and Patrick and his wife live on, pretty well.
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Getting into Joe’s home can be an issue because of having
to search for a parking spot and walk a few blocks. He also has many stairs
to climb to go to his daughters and son’s spaces on the second and third
floor. It seems as though his home may be a bit small as well considering the
fact that Joe decided to knock down a wall to make more room for a kitchen
table. He also likes to take walks around the block but experienced a few
falls during this activity.
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Social
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Joe has the support of his wife, his children, and his
best friends/co-workers
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Social interaction with his family can be an issue because
of Joe’s mood swings and sudden outbursts. They can sometimes become violent,
especially when something is wrong.
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Cultural
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He doesn’t go to mass on Sunday, but he does go to the
church to pray weekly. His wife is very religious, and they both practice
some Catholicism. His family is also
very proud of their Irish background and try to make it a point to marry
someone whom shares that same cultural background.
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He and his wife struggle a little with why this disease is
occurring in their family, so the stress, the questioning, and the unknown
can get in the way of their religious beliefs
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Personal
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He is a 44 year- old male. I would say he is low- middle
class for SES, and he is part of the Boston PD
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He is very caring, but sometimes his mood swings and
overall temperament can get in the way.
He also likes to drink almost daily.
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Temporal
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At times, his work schedule can be normal, and he can get
home at a reasonable time. Also, his home environment can be a safe, calming
place when Joe can come home and watch the Red Sox.
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On the other hand, Joe’s work schedule could be from 8:00
to 5:00pm or it could last until midnight or later depending on where and
when he gets assigned for his job. Also, with so many people living in the
house, his home environment can become fast-paced and more active depending
on the activities he attends for his children.
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Virtual
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Joe has a cell phone that he can use to help him communicate
with his wife and family. This helps him to be reminded on when and where he
is supposed to be when it comes to events for his children. He also watches
T.V. to keep up with the community after he lost his job, and to keep up with
his favorite sports team.
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Some of Joe’s virtual barriers would be that because of
his impulsivity issues from the disease, Joe sometimes calls or texts his
wife multiple times a day to ask the same question, or to check on her to be
sure she is o.k.
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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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Joe’s goals include:
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Muscle strengthening (core)
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Walking without the use of a walker or
wheel-chair, even though it may be needed as the disease progresses
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Finding ways to cope with his new, permeant
lifestyle
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Reducing the effects of chorea or finding ways
to adjust to the involuntary movements
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