Inside the O'Briens

“You are either Now Here or Nowhere.”

― Lisa Genova, Inside the O'Briens

First & foremost, this book is a phenomenal read and I had a hard time putting the book down once I opened it! This story is about Huntington's disease, and was told through the life of the O,Brien family, which made it so much more realistic. It was so interesting to learn about the disease but also see how the family copes with this disease. It was very eye opening to see that the person with the disease is not the only one affected, but also everyone in that person's life. Huntington's disease (HD) is a horrible neurodegenerative disease characterized by a progressive loss of voluntary motor control and an increase in involuntary movements. There is no cure and, in other words, if you test gene positive there is no way out.

The main character Joe O'Brien is a loving father and husband living right outside of Boston in a neighborhood called Charlestown where he works as a police officer. Joe begins having a change in behavior, such as outburst of anger, memory impairment, and weird movements, that were noticeable by his wife and coworkers. These types of behavior are relatable to the non-clinical stage of HD called "prodrome" which may appear fifteen years before motor problems appear. After several doctor visits, he receives terrible news that he carries the gene for HD and his kids have a 50/50 chance of carrying it as well. Joe is married to Rosie and together they have four adult children. Two of the four children decided to get tested as well and turns out that they are also carrying this gene.

This book gives perspectives from numerous viewpoints, whether it's being diagnosed with the disease, fear of testing positive for the disease, learning how to cope with this disease, living with someone with the disease, or simply what it is like being a friend of someone who carries the gene. My favorite quote from the book relating to this is, “As they lurch down the hallway and finally make it to the kitchen, it occurs to Joe that this is the best anyone can hope for in life. Someone you love to stagger through the hard times with.” Joe came home to find Rosie hysterical after everything that she has been through, but Joe encourages her that even though things may be different, everything is going to be okay, and they will get through it together. Although this family is experiencing one bad thing after another, they show how to keep living life to the fullest. Although I am still very upset with the ending, this book did an amazing job on showing what Huntington's disease looks like & I highly recommend this book!


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

Joe O'Brien

DOB: unknown

Reason the client is seeking OT services and concerns related to engagement in occupations (may include the client’s general health status)	Huntington’s disease (HD) is an inherited neurodegenerative disease characterized by a progressive loss of voluntary motor control and an increase in involuntary movements. Initial physical symptoms may include a loss of balance, reduced dexterity, falling, chorea, slurred speech, and difficulty swallowing
Occupations in which the client is successful and barriers or potential barriers to his/her success in those occupations (p. S5)	-Husband, dad, grandfather, brother, police officer, community member of Charlestown, dog owner, baseball fan -A few symptoms that Joe showed throughout the book include depression, difficulty focusing/prioritizing, involuntary movements, and impaired balance. These were all symptoms that Joe was experiencing slowly over time. He mood could instantly change, he fell early on in the book hurting his knee, he began to have trouble writing police reports because he was not able to focus or remember, he was unable to hold his grandchild because of his chorea, he had thoughts of killing himself due to depression, and was not able to keep his job because it was not safe for him to drive nor be around a gun
Personal interests and values (p. S7)	-Being a strong and loving father & husband, cheering on the Boston Red Sox, protecting his community, having Sunday dinner with his family, spending time with his best buddies, Tommy and Donny
The client’s occupational history/life experiences	-Client experiences knee problems due to falling, his mother died from HD -Client lives in 3 story home with wife, children, and dog, Yaz -Work duties include driving police car to monitor safety around town, type police reports, and work security at big events going on in the community -Home duties include walking the dog, repair/replace items in home, provide for family
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, grandfather, coworker, police officer, friend, community member -Routine: wake up, go to work, drive around to monitor community, respond to calls, type reports, go home, eat supper, spend time with family -Client has temper outbursts towards his children and wife, Rosie. His chorea has caused him trouble with sitting still and he has broken several glasses at the dinner table. He has a hard time writing his police reports due to memory, and many complaints are filed assuming he is on drugs due to chorea. -Habits: walking dog, eating dinner with family, drinking beer and watching tv -Client has balance issues so walking his dog might cause him to fall
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 lives on first story of home -Walking his dog is good exercise -Katie introduces him to Yoga	-Street can be crowded so client may have to park a good distance from home  -Chorea may cause him to fall walking dog -Driving police car could be dangerous
Social	-Client has loving and supportive family -Friends to watch out for him and protect him	-Dinner table too small for the whole family -He passed down HD to his kids and it is difficult to stay strong for them
Cultural	-Client has always been known as backbone of family -Tough mindset of policeman	-HD caused him to quit his job so he is no longer to provide for his family -Client is embarrassed of involuntary movements and does not want to be considered an alcoholic like his mother
Personal	-Male, 44 y/o, father, husband, police officer	-Client is afraid of dying after watching his mother suffer in the hospital
Temporal	-Client symptoms HD are slowly progressing, but he still has time to spend with his family and friends	-Client’s children have 50/50 chance of getting HD, but symptoms shouldn’t show until around 35 y/o
Virtual	-Client has cell phone to contact wife & children when needed	-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)	-Learn the best way to cope and help his family cope with this disease -Be strong for his family -Learn how to better manage his symptoms

Neuro Note #2 - Multiple Sclerosis

In a few short weeks my classmates and I will be presenting media projects, which involves our intervention plan with one item and case study that was assigned to us. The client in my case study was diagnosed with Multiple Sclerosis, so I decided to find a story on someone living with this horrible disease and learn more about it.

Breea Renee was diagnosed with an acute onset of Multiple Sclerosis when she was a senior in high school. Her YouTube channel shares her story along with her journey of healing and recovering. Multiple Sclerosis is a disease involving damage to the sheaths of nerve cells in the brain and spinal cord. Symptoms can include numbness, impairment of speech, blurred vision, and severe fatigue. 

I watched several videos on Breea’s channel but the video that shared her story was the most inspiring and tear-jerking. I loved the way the video started out with her family and friends telling who Breea was to them. She is a friend, daughter, cheerleader, etc., not a girl with MS. On December 8th, 2011, Breea woke up feeling off balance and later that night collapsed. Within 24 hours she became paralyzed on her left side. She eventually became blind in her left eye and could not talk or swallow. The video starts out with her hospital journey and pictures of friends and family visiting, celebrating Christmas, and different therapy sessions. My favorite part of the video was Breea sitting in her wheelchair at the hospital and she says, “I now have no time to waste. Life can change so suddenly.” This is so true, yet heart-breaking. She wrote goals everywhere of what she wanted to accomplish to overcome this disease. One of her goals was to walk across the stage at high school graduation and she worked so hard and progressed at every therapy session and was able to meet that goal! It shows a short clip of her mom spotting her doing a back handspring at the very end of the video. Before being diagnosed with MS, she was a high school cheerleader, which really hit home being that cheerleading was one of my hobbies growing up. Breea is still in a leg brace today and is working hard to gain back all of her strength. If you want to watch an inspiring story with a happy ending, Breea’s is the one for you! 

Find Breea’s story here: https://www.youtube.com/watch?v=hfD9s1_TN0s

Learn more about Multiple Sclerosis: https://www.mayoclinic.org/diseases-conditions/multiple-sclerosis/symptoms-causes/syc-20350269

Neuro Note #1 - Spinal Cord Injury

     Learning about spinal cord injuries and all the different types has been so interesting to me and I often catch myself wondering, how would I deal with an injury like this? So much would be taken away and life would be much different, but when I hear other peoples stories, I feel so selfish. It is so inspiring and tear-jerking seeing how they adapt to a different lifestyle and get back to life as best as they can. Also, as a future OT, being able to help others with this injury adapt to life will be so rewarding! Alicia Reagan is a mom, wife, and christian that is living with a spinal cord injury. While she was expecting her 6th child she developed Transverse Myelitis, which is virus that attacks the spinal cord, and left her paralyzed from the ribs down. Her spinal cord was damaged at the C5-C7 vertebrae level.
     Reagan uses her blog and youtube channel This Enabled Life, to inspire others who are living with an SCI, and also those who want to learn or hear about her story. She has multiple YouTube videos of tips on how she deals with certain daily activities (blowing drying hair, shaving legs, cooking, etc.) and also certain obstacles that she faces or deals with on a daily basis. I chose to write about her because she amazes me with her faith and motivation to keep on keeping on. I have learned so much about what it is like to live with a spinal cord injury just by watching her videos. Also, we are learning about the different areas of the vertebrae and what affects each level. Being able to visualize a real life story of a C5-C7 injury has been helpful! 
     One video that stood out to me was her showing what is looked like to have a spasm. As she struggled to get out the bed and transfer to her wheelchair in the mornings, she experiences spasms. She commented that it is very embarrassing when this happens, especially in public, but wanted her followers to see what it looked like. THAT IS HUGE!!!! I didn't know what that looked like so it was very neat to see, but also very heartbreaking. Her story is so heartening and I encourage everyone to check out her blog and YouTube channel which I will link below.

https://aliciareagan.com 

https://www.youtube.com/channel/UCO-DMDPGPWe8_aoklNWDmpA
   

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Frame of Reference for Development of Handwriting Skills

        Development of Handwriting Skills is a Frame of Reference that identifies functions and dysfunctions in five areas of handwriting for children. These areas include proximal posture, components, use of writing tools, grasp, and handwriting. All of these areas are necessary for effective and legible handwriting for a child.

        Good proximal control is requirement for functional distal control of the writing utensil. Essential components include could-motor skills, attention, and memory. Writing tools such as pencils and erasers need to be stabilized and positioned in the right way for legible handwriting. Lastly, functional grasp is needed in order to manipulate the writing tools.

        During an evaluation, the OT might look at legibility, alignment, spacing, and size. The OT can also perform some assessments to measure visual-perceptual skills and fine-motor skills. The treatment can be done in the classroom being that that is his natural environment. The aim of the treatment is for the child to be able to develop complex fine-motor skills and be able to participate in occupations as a student that are age-appropriate.

       Three terms that are used in this theory are Frame of Reference, evaluation, and occupation. A frame of reference uses theories to guide evaluation and assessment and application to the practice. An evaluation is a process that takes place on the first visit where the OT identifies the diagnosis, reason for referral, and information for an occupational profile. An occupation is daily activity that is meaningful to you.

Health Promotion

Two areas that stood out to me in today's health promotion lecture was the IHI Triple aim and health literacy. The IHI Triple Aim is a framework developed to improve the patient or client's experience. There are numerous people that visit doctors offices everyday and leave with a handful of questions.  For example, giving prescriptions with instructions to take twice daily, but not informing the client what time. If the patient is consuming two pills at one time, that could potentially be very harmful. I can see where this easily happens because I have been in that situation many times. When you give prescriptions, instructions, or take home exercise programs it is crucial that you explain it in a language that clients can understand and confirm that there is not any confusion. Also, health literacy is very important and is something that has never crossed my mind. Health literacy is the degree at which individuals understand and process basic health information. Prior to acceptance, I worked in a outpatient clinic and had to help many elderly patients fill out paperwork because they didn't have their glasses, but never considered that they might not be able to read. This is also something to consider in the work place, but most importantly, making the client feel as comfortable as possible.