Inside the O'Briens

Inside the O'Brens by Lisa Genova gives in inside look at a family that recently discovered they carry the HD gene. Joe O'Brien lived his whole life thinking his mother died at a young age, in a state hospital due to 'being a drunk'. It's not until he gets the Huntington's diagnosis at age 44 that he realizes he was wrong. Genova does a great job educating the reader on the effects of Huntington's and what it does to a family. I even learned a couple things about the disease that I never thought of before reading, such as there is a grey area in genetic testing where they have enough CAG repeats that they could get Huntington's. Also, I learned that as the disease progresses, people actually lose weight due to excessive chorea. I never thought fidgeting could take up enough calories to have an effect like that. My favorite thing about this book was that Genova gave the perspective of Joe, as well as, Katie, his youngest daughter. With hearing Joe's thoughts, the reader gets a first hand experience of the social hardship of having the disease, the difficulty with symptoms and proprioception, and how the public reacts to Joe and how that effects him. With Katie, the reader sees the family side of HD. They get to see the difficulty behind the decision for genetic testing, the constant fear in every little clumsy thing they do, and what it's like to watch a loved one struggle with a disease that you could potentially get one day. Throughout the book, you find out that two of the siblings tested gene positive for HD but you never find out if Katie, one of the characters we grow to love, is positive or negative. I think this is for a reason. Katie represents a family coming to terms with the disease. It's not about being gene positive or negative, it's about learning to live your life to the fullest, no matter the circumstances and not letting HD define who you are or who you are going to be in life. 

Name: Joe O’Brien                                                                                         Date: 04/22/2018

Occupational Profile

Client Report	Reason the client is seeking OT services and concerns related to engagement in occupations (may include the client’s general health status)	Joe is seeking OT for relief of symptoms of Huntington’s disease. He is noticing an increase in chorea, causing weight loss, beginning to experience some muscle weakness in his jaw with slurred speech, and difficulty controlling mood.
	Occupations in which the client is successful and barriers or potential barriers to his/her success in those occupations (p. S5)	The client is independent when it comes to feeding and is drinking from a straw. He’s noticed barriers when it comes to some ADL such as self-dressing and has adjusted his wardrobe to sweatpants and t-shirts to accommodate. He is also worried about his anger outbursts that cause destruction of their home.
	Personal interests and values (p. S7)	Joe has been a Boston police officer for 25 years and takes pride in his independence and strength. He is a huge Boston sports fan, “Go Sox” and avid Irish Catholic. He values his relationship with his family, his friendship with Tommy and Donny, and providing for Rosie, now and in the future.
	The client’s occupational history/life experiences	Joe lives on the first-floor of his family’s three-story townhome in Charlestown, MA. He lives with his wife of 26 years, Rosie, and his youngest son, Patrick. His oldest son, JJ, and his wife live in the apartment above them and his two daughters live in the apartment above them. They all get together and have a family supper every Sunday. Hx: Diagnosed at age 44 with HD, mother died of HD. Two of four of his kids have been confirmed HD positive. Currently prescribed a neuroleptic for temper flare-ups by Dr. Hagler
	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)	Travis describes his current roles as husband, father, and friend. 8am-7pm Wake up Morning hygiene routine Watch news or Rosie’s recorded Oprah Go on a walk Work on the kitchen expansion if feeling up to it Go to yoga with Katie 7pm-10pm Eat dinner with Rosie Watch news or Red Sox game and drink a beer or two Nightly daily hygiene In bed with Rosie Since diagnosis, has a habit of using holy water to make the sign of the cross when entering and leaving his house to cleanse him of his sins.
Context	Aspects of the client’s environments or contexts, as viewed by the client (p. S28)	Supports to Occupational Engagement:	Barriers to Occupational Engagement:
	Physical	No physical supports	Chorea affecting performance in ADLs
	Social	Strong family support system, Rosie is understanding of outbursts and has friends at work looking out for him.	Being described as drunk or on drugs in public by people that don’t know of his HD diagnosis
	Cultural	Expected to be sufficient in work activities and provide for his family. Strong Irish Catholic family	Was forced to recently quit his job at Boston PD and is only receiving 30% pension to support his family
	Personal	High school education, graduated police academy at age 19, middle SES	Still young at 44 but experiencing difficulties in ADLs that wouldn’t typically be experienced at this age. Difficulty coming to terms with it affects of HD
	Temporal	In his later stage of life with 4 grown children and 1 newborn grandchild	Has been given the “10-20” years to live post diagnosis
	Virtual	Has a cell phone to text and call friends and family	No virtual barriers
Client Goals	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)	Joe’s number one goal is slowing the progression of his chorea. He values his independence and wants to prolong time without a walker or wheelchair. He also wants to be able to tell his kids and wife that he loves them in the later progression of the disease so working on mouth and jaw muscle strength is also on his list of goals. He is also dealing with lots of guilt associated with not knowing his mother died of HD and passing it on to his children without knowledge so some coping skills and stress management would be beneficial to Joe.

Neuro Note: Alix Reese

In an article entitled, Alix Reese: "I'm Still Myself", a young woman, Alix, is interviewed about her life after her spinal cord injury. Alix was giving her friend a ride home in Columbus, OH when she was caught in the crossfire of a street shooting. The bullet went through the back of her neck, damaging part of her spinal cord and leaving her paralyzed from the shoulders down. She uses a suck and blow device to control her motorized wheelchair and is on a ventilator but she's not letting that slow her down.

The one thing that stood out to me in this article was her attitude about her situation especially considering it was completely out of her control. She wasn't being reckless or doing something risky, she was doing a favor for her friend and her life was completely altered due to it. But rather than have resentment, she has a positive outlook and hasn't let the incident change who she is. She still loves science fiction movies and novels and is still planning on fulfilling her goal of becoming a teacher.

My clinical take away from this article is the importance of attitude when it comes to life altering diagnoses. Although she's 31 and living in a nursing facility with people over twice her age, she knows that she still has a ton to accomplish in life. The day she was shot, she was looking into going back to school to be a teacher or speaker and she still has that plan in mind today. I think that is a big part of ones attitude if they can still picture themselves accomplishing the goals they had set before the injury. That's something we as OTs can work on with them to do. Find their passion or goals they had pre-injury and find a way to incorporate that into their therapy and lives. 



References

Oliphint, J. (2016, May 27). People: Alix Reese: "I'm still myself". Retrieved from http://www.columbusalive.com/content/stories/2016/05/26/people-alix-reese-im-still-myself.html

Neuro Note: Ray's ALS Journey

Ray is a nurse, husband, dad, bicycle enthusiast who was recently diagnosed with ALS. He has a blog, full of humor and sarcasm that is dedicated to telling his story. This particular article I read was entitled One Year. It describes his first year post diagnosis. He talks about his family life, what it was like to tell everyone that he had ALS, and the changes he experienced in the first year.

A couple things I noticed when reading is that Ray is using humor to make his situation better. Immediately, I go into an OT mindset and think if that's the reason he is still doing so well. Seeing the funny side of things, keeping a positive mindset, and having a supportive family all could have impacted his ability to stay strong through this progressive disease.  I also noticed that he has had to make some drastic life changes since his diagnosis.  Ray is the epitome of an outdoorsman.  He used to love mountain climbing and would ride his bike daily.  These are both important occupations for Ray that he has come to terms with not being able to do like he used to.  One of his bucket list items was to bike from coast to coast. One cool thing that people following the blog have done is kept track of how many miles they've biked in order for Ray to "bike across the country". They've accumulated 42,000 miles so far!

My clinical takeaway from Ray's story was kind of an "ah-ha" moment for me. In class we always talk about home modifications as if anyone can do them. Well, my "ah-ha" moment is that isn't always the case. Ray lives in a 100 year old house with no bathroom on the bottom floor. He talks about how they had contractors come look but that would be a logistical nightmare with their layout and having to live there during construction. He also mentioned the option of a chair lift for the stairs, but that it was way to expensive for them. Ray and his wife talked about moving, but they raised their kids in that house and didn't want to live anywhere else.  So my take away is a pretty important one for OT.  For some situations, a textbook answer isn't always the right answer for the family.

I loved learning about Ray and getting a first hand account of his first year being diagnosed with ALS. His thoughts and attitude is something that truly inspired me.

Developmental FoR

I found interest in the Developmental Frame of Reference.  It encompasses the the sequential aspect of development and how behaviors are influenced through the mastery of previous stages.  People develop at different rates but each stage of development can only be achieved once the previous stage is completed.  Developmental FoR included 6 adaptive behaviors: sensory integration skills, cognitive skills, dyadic interaction skills, group interaction skills, self-identity skills, and sexual identity skills.  This FoR works with clients of all ages from childhood on. According to this theory, functional development would mean completing the stages of development in sequential order.  An OT helps intervene with maladaptive behavior and promotes sequential development. In school aged kids, a therapist might observe their social interaction with peers to assess dyadic interaction skills.

Three key terms associated with the Developmental FoR:
1) sensory integration skills - ability to receive, select, combine, and coordinate sensory information for functional use
2) dyadic interaction skills - ability to engage in a variety of primary groups
3) self-identity skills - ability to perceive self as an autonomous, holistic, acceptable person who has permanence and continuity over time

Reflection on Health Promotion and Health Literacy

Today in class, we talked about health promotion in the field of OT.  Through this lecture, I got a better understanding of our role in a interdisciplinary group. Dr. Flick gave an example about a client she had in acute care in which the dietitian modified her meal plan to a no sodium diet. The dietitians goal was to improve the clients health through food consumed but failed to take into account the ability for the client to continue the diet plan post discharge. That is where the OT steps in.  The client had low muscle function in her upper extremity, and typically ate canned vegetables and microwave dinners because they were easy for her to prepare for herself independently. Both of those are high in sodium though, making this new diet difficult to achieve in her home setting. The dietitian and OT worked together to then make a plan that would still promote independence in the client and work with the new diet. I also learned about the importance of health literacy. Making sure a client has a clear understanding of what is going on and what is expected of them is essential to having success in the future.  If the client does not understand the purpose behind a task, they're less likely to do it consistently or with purpose. Mutual understanding and building a therapist-client report can help with communication and make the client feel more comfortable when asking questions, and therefore, have a better understanding of their health goal and how to achieve it.