Neuro Note: Brain on Fire

     The book Brain on Fire: My Month of Madness by Susannah Cahalan is a memoir about and by Calahan, a journalist for the New York Post in her mid-twenties. Typically an intelligent, outgoing, and friendly woman, she starts experiencing strange symptoms that first seem like the flu but then become more psychiatric in nature and much more concerning, such as hallucinations, seizures, and behavioral outbursts that were very unlike her normal self. After visiting several different doctors and a month-long stay at the hospital, Susannah is finally diagnosed with anti-NMDA-receptor encephalitis, a rare and likely under-diagnosed autoimmune disease. The disease has a roughly 75% chance of normal recovery or mild side-effects, and a 25% chance of severe side-effects or death, even if it is caught early and treated. Luckily, Susannah makes a full recovery and is later able to return to her life as a journalist and continue in her relationships, both with her boyfriend and other friends and family.

     I chose Brain on Fire because it was a book I had read my freshman year of college for an introduction to psychology class. (Funnily enough, it was for extra credit in that class, as is this neuro note that I'm writing. I've always been a sucker for extra credit points.) I enjoyed the book back then, and when I saw it on the list of resources, I thought it would be interesting to reread it now- five years later, with a bachelor's degree and a semester of occupation therapy school under my belt. I now have a much deeper understanding of many of the neurological terms used in the book and I have a greater appreciation for the book and the doctors mentioned in it.

     While Susannah did not see an occupational therapist, there were a few places I could see her benefitting from occupational therapy. As she is recovering from the disease, a months- and years-long process, Susannah is very nervous to return to living by herself after living with her parents during this time, but she is also desperate for the freedom that it will allow her. I think seeing an OT would have helped her re-learn her usual occupations and also increase her confidence about living by herself.

     Something that I took away from this book is that it can be incredibly helpful to get a second opinion as practitioners when we are working with a client who is outside our area of expertise. Susannah saw several different doctors and got several incorrect diagnoses until her neurologist at the hospital sought the help of someone who had experience in cases like Susannah's. This doctor was finally able to correctly diagnose Susannah and get her the treatment needed to start on the road to recovery. While we as OTs will not be diagnosing people, we can learn from this and refer clients to other therapists or get ideas from them to best help our clients when we may not know exactly what to do. I am so glad that I chose to reread this book, and I highly recommend others to read it as well.

Cahalan, S. (2012). Brain on fire: My month of madness. New York, NY: Simon & Schuster
     Paperbacks

Memphis Rollin' Grizzlies

     Last week, some of our class went to watch a practice of the Memphis Rollin' Grizzlies, a local wheelchair basketball team. The team is made up of men with varying levels of disability and a wide variety of ages. The coach- who used to play on the team- talked to us quite a bit to tell us more about wheelchair basketball and answer our questions. We learned that there are different levels that wheelchair basketball teams can play on competitively, and the Rollin' Grizzlies are on a fairly high level and do well in this level. Watching the team practice was very interesting, but also not much different from a non-wheelchair basketball practice. Just like any other basketball team, the players were not afraid to play hard and run into each other, and we saw quite a few players fall over in their wheelchairs. While this made a lot of us students pretty nervous, the players did not seem too phased and just got back up, often with the help of other players (again, not unlike what you see in a "typical" basketball team).
     We also got the chance to try out the sport at the end of the practice. This was a lot of fun and showed us how hard it is to play basketball in a wheelchair. While I am definitely not good at basketball anyways, I found out that it was even harder to shoot while sitting in a wheelchair. You are not able to get momentum from bending your knees and pushing off the ground like you would while standing up. It was also very difficult to maneuver the wheelchair while also controlling the ball, and I can imagine it may take awhile to get the hang of that. The players were all so friendly and encouraging while we tried our hand at this sport that they are all fantastic at.
      The biggest takeaway I got from watching this practice and then participating is that these guys are really no different than regular basketball players. I think that I sometimes start to feel sorry for people with disabilities and forget that they are people outside of their wheelchairs or other assistive devices, with different hobbies, talents, and interests. While we need to keep in mind any specific precautions for people in wheelchairs, we also need to remember that they are not glass dolls and they may be comfortable being rough and occasionally falling over. It is so important to recognize clients as their own individual and not just see them as a disability, condition, or illness.

Media Project

     Doing the media project (where we were each assigned a random household object and then a "client" to make something out of the object for) has been an eye-opening experience. It has made me use my creative skills, something I am not very confident in, to come up with a way to use my item, which was cotton balls, for my client Paula, a 76-year-old woman with Parkinson's disease. I decided to use the cotton balls as either pretend "buttons" to practice buttoning with or to cover actual buttons with a piece of the cotton ball to give Paula something larger and more textured to hold on to, as well as to serve as a visual cue since she also has cataracts. I think that realizing there was a practical way to use the cotton balls (covering the buttons as opposed to just practicing doing buttons with the cotton balls) was the most meaningful realization I had. When I first read about Paula, I was frustrated because all of the uses I could think of for cotton balls were crafts or games, and in the information given about Paula, it states that she thinks the games and activities done in the skilled nursing facility where she lives are boring and she seemed to think she was above those types of things. I didn't really think she would like to practice buttoning with the cotton balls either, but when I finally thought of how to incorporate them into the actual act of dressing, I realized I could explain that to Paula so she could work up to using the cotton balls practically.
     From completing this project, I have learned there are hundreds of ways to use everyday objects to help our clients, which can be especially important if we do not have access to resources that cost more money. This has encouraged me to change my thinking to be more outside of the box. The project also reminded me that we have to always be client-centered. While I may think it would be a lot of fun to use cotton balls for arts and crafts or to play games with, I will have clients who might not think it is so fun and I will need to come up with other ways to help them. The project has definitely had an impact on how I will work in the future, both while in school and once I graduate. It will remind me to think of different ways to help clients that may not be typical. I will also remember that assistive devices do not have to be high tech, and low tech can sometimes be the best way to work around a problem. The media project has helped me see things more creatively as well as practically, and I can't wait to put these skills to use in the future!

Neuro Note: My Beautiful Broken Brain

     In the documentary My Beautiful Broken Brain, we see the aftermath of a hemorrhagic stroke that affected Lotje, a 34-year-old woman. Before the stroke, Lotje was an intelligent, friendly person who was constantly writing and reading, both for her job as a producer and for leisure. After the stroke, she is barely able to do either and is very upset by this, but she works hard to regain these abilities. She also has trouble relating to people like she used to and feels like her friends don't fully understand what she is going through. I chose this movie because it was easily accessible on Netflix, and I thought it would be interesting to see how a stroke affects someone relatively young.
     After watching this documentary, I have a better understanding of how much a stroke can change a person's life, especially someone in the middle of their life. One thing that stood out to me was a part where a doctor was testing Lotje's vision because she was not able to see very well to one side. We had recently learned about the visual system in Neurobiology and how the visual fields transmit information contralaterally. This was briefly explained to Lotje, and seeing this done with a patient helped me make more sense of what we had previously learned. I would highly recommend this documentary to anyone interested in strokes or how the nervous system works.

Robinson, S., & Sodderland, L. (Directors). (2014). My Beautiful Broken Brain [Motion picture].     
     United Kingdom: Netflix.

Inside the O'Briens

     The book Inside the O'Briens is a look into the life of a family with the Huntington's disease gene. The father of the family, Joe O'Brien, starts showing symptoms of Huntington's disease (HD)- such as unprovoked anger, forgetfulness, random and involuntary movements called chorea- in his 40's, and they start affecting his job as a Boston police officer and his relationships with his family. At first, he attributes these things to stress and a bad knee, but he ends up going to a doctor and is diagnosed with HD. The disease is rare, fatal, and passed down through a parent's DNA, so his four grown children must determine if they want to find out, through a blood test, if they will develop HD or not, as opposed to waiting to see if symptoms start in them later in life. While the book is primarily told through the points of view of Joe and his youngest daughter, Katie, we also see some of what the other family members, including the mother, Rosie, are going through as they process everything.
     This book really showed me what a harsh disease HD is and how it could very easily tear a family apart. I had also read a blog that told the true story of a twenty-year-old girl, Allison, who is diagnosed with juvenile HD. Her story was quite different from that of the fictional O'Briens, as her mother had already died of HD and she lived solely with her father, who was her primary caregiver. While reading about Allison taught me a lot about how HD can progress all the way through death, at least in its juvenile form, the story of the O'Briens taught me more in-depth about the beginning of HD and the grieving process a family must go through when they are not expecting this diagnosis. Joe finally knowing what his mother really died of and dealing with this was so sad to me, as he feels the shame of previously thinking she had drank herself to death and finally realizing that she wasn't the monster that she came across as, but actually a loving mother who was battling a monster inside of her.
     I think reading Inside the O'Briens could help me in the future if I ever have clients with HD. It shows a much more personal side of the illness, instead of just the harsh facts presented in textbooks that do not talk about what a person and their family are going through mentally, along with the physical disability that HD causes. While I will never really know what they are going through, I may now be able to empathize more than if I had only learned about HD through textbooks or what I'd found online.

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

Occupational Profile

	Reason the client is seeking OT services and concerns related to engagement in occupations (may include the client’s general health status)	Client has been having trouble being still and walking recently. He has also started having random outbursts of anger. These problems are due to his recent diagnosis with Huntington’s disease (HD).
	Occupations in which the client is successful and barriers or potential barriers to his/her success in those occupations (p. S5)	Client takes pride in being a Boston police officer. He is also a husband, father, and dog owner. His random movements (chorea) and difficulty walking have been a barrier to his job as a police officer, and his anger is harming his relationships with his family.
	Personal interests and values (p. S7)	Client values being a loving and supportive father and husband. He enjoys baseball, particularly the Red Sox. He also enjoys hanging out with his friends outside of work.
	The client’s occupational history/life experiences	Client lives on the first floor of a three-story home with his wife and their four grown children. Client has previous knee injury, which is what he was attributing his problems walking to. His job has always had a lot of influence on his personal life and overall personality. At his job, client must chase after suspects, fire his gun when necessary, and fill out reports on arrests or other situations.
	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)	Some roles client is in are father, husband, and police officer. On a typical day, client wakes up, gets ready for work, drives to work, does whatever is necessary for work that day, goes home, has dinner, watches the news, gets ready for bed, and goes to bed. Client has had difficulties remembering what happened when he is writing reports for work. He often gets angry at people for no reason, which has been upsetting his family. Client brings the family dog for walks a few times a week, which can be harmful if he falls because he goes by himself. Client also drinks regularly, which can contribute to his uncontrollable mood swings and lack of coordination.
	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 floor and does not have to climb stairs.	Home is somewhat small and client has accidentally hurt others in the family if they are in close proximity to him due to the chorea.
	Social	Family is very supportive.	People at work do not know client has HD, so he has been getting in trouble due to the symptoms.
	Cultural	The culture of client’s close friends and family encourage him to go to the doctor and do what he can to help his HD.	Culture does not understand differences, and people often stare at client due to his uncontrollable movements.
	Personal	Client’s personality is one that is strong and he wants to fight the disease.	Client is embarrassed to admit to the public that he has something wrong with him.
	Temporal	Client has been married for about 25 years, so the stability of this long-term relationship is comforting.	Client still has more than ten years left in his job until he can retire.
	Virtual	Cell phones enable client to be in contact with friends at work so he can check on them and vice versa.	Client obsessively texts wife for no reason.
	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)	Client would like to keep his anger outbursts under control. He would also like to work on walking, strength, and balance to maintain these things as long as possible.

Neuro Note: Tourette Does the Talking

     In the TEDx Talk "Tourette Does the Talking," Thomas White, a then-senior at the University of Notre Dame, walks the audience through a typical day in his life as he deals with Tourette syndrome. But Thomas also reminds us that despite the many challenges every human being faces- whether that's depression, a parent's battle with dementia, or a failing marriage- we are all going through life together and should support one another and celebrate every moment. I chose this video for my neuro note because Tourette syndrome is interesting to me, and I thought I knew a good bit about it before this, but as usual, I knew much less than I thought I did!

     Because of what we see in the media, I had believed that random cursing, called coprolalia, was the most common symptom of Tourette syndrome, but in the TEDx Talk, Thomas informs us that, although that is part of his condition, it is actually pretty rare. I also did not know that physical movements could be a part of Tourette syndrome. Thomas tells us that he often throws things such as his phone or shower supplies because of his Tourette syndrome.

     While this TEDx Talk does not come across as particularly motivating at first, Thomas does bring a very moving sentiment into it. While fighting through grunts and other sounds caused by Tourette syndrome, he talks about how valuable the gift of life is. Despite these interruptions to the planned presentation, Thomas is an eloquent speaker with an important message. I strongly encourage everyone to watch this talk on YouTube, both to inform you more about Tourette syndrome and to help you feel connected to others around you.

References:

White, T. (2014, January 21). Tourette Does the Talking: Thomas White [video file]. Retrieved 
     from: https://www.youtube.com/watch?v=0szLOMIt9SQ