Neuro Note #4- My Beautiful Broken Brain

My Beautiful Broken Brain

    

Summary

My Beautiful Broken Brain is a Netflix documentary of a 34 year old woman who documents her struggles, setbacks, and breakthrough and she has a stroke. The night of Lotje's stroke, she had spent the evening watching fireworks with friends. She was awakened in the middle of the night by an excruciating pain, and she knew something wasn't right because she was fading in and out of consciousness. She tried to find someone to help, so she ran to a nearby hotel, but she couldn't speak. She was found hours later passed out in the hotel bathroom and was rushed to the emergency room. Lotje need speech language pathology because she was experiencing extreme Broca's aphasia, and she also was having hearing and visual problems as well. Lotje made the decision to live in an inpatient neurological facility. There she would see an occupational therapist, speech language therapist, psychologist, and a psychiatrist. Over time, Lotje made several breakthroughs. Her speech has improved drastically, and she was able to relearn to read and write. She went on the be the director of this documentary.

Why I Chose This

Since I began OT school, I've always had a special interest in stroke patients. I've worked with patients who have suffered from a stroke, but I've been curious about what exactly happens during a stroke and the recovery process from that. When I came across this documentary, I saw it as the perfect opportunity to further my learning in this area.

Reflection

I've learned about Broca's aphasia a lot during my neurological aspects class, but this documentary taught me about it much more in depth. Lotje struggled with finding the right words to say, and you could see how frustrated and discouraged it was making her. As an OT/S, one of the pillars that we value is client-centeredness. While Lotje was in the Neurological Inpatient Unit, she quoted "I'm having to get used to becoming a patient, and being reduced to being on the same level as everyone else." That quote is a perfect example of the medical model used by most healthcare practitioners. While that quote made me sad that she felt that way, I took pride to be part of a profession that values viewing the person first and their condition second. It was very uplifting to see how much Lotje improved after her stroke. It made me happy and excited to work with client's in the future who have suffered from strokes and help them return back to their meaningful occupations.

References:

Robinson, S. (Producer) & Sodderland, J. (Director). (2014). My beautiful broken brain [Film].

Link:

https://www.netflix.com/watch/80049951?trackId=13752289&tctx=0%2C0%2C0f6250ddafc9a32d895cdc00ed1c90e715d0e341%3A0c40cc2cecc710f94ba17481f02a8bc2a589edf3%2C%2C

Media Project - The Adaptive Zippering Board

           “The Adaptive Zippering Board”

            The media project was one of my favorite assignments of occupational therapy school to date. This project gave me the freedom to really use my developing OT brain to create an intervention for a client in need. One of the most significant things I learned from this assignment is that it is not always easy tailoring an intervention to someone with a specific diagnosis. Before I decided to create the Adaptive Zippering Board, I had several other ideas using zip ties that I thought would be great, but none of those were applicable to my client and the things that he found meaningful. One of the major pillars in occupational therapy is client-centeredness, so it is imperative as an OT to make sure that the interventions I assign to the client are functional and relative to the client’s wants and needs.

            Although my client is fictional, I feel like I really grasped and mastered the purpose of the “just-right challenge” through my innovation. The Adaptive Zippering Board and the adaptive clothing I have provided allows three different grades of the intervention that could be tailored to my client as he improves in therapy. For example, at his lowest level of functionality, my client should complete the adaptive zippering board using the zippers with the zip ties. As that task becomes easy for him to complete, he can move on to using the zippers on the Adaptive Zippering Board that do not have the zip ties. After this has been mastered, my client can put on the clothing with adaptive zip ties zippers and practice his dressing. Once this is done, the client can begin working on dressing independently with no adaptations. This project definitely challenged my creativity - both artistically in the way I designed my board and mentally as I thought of the perfect intervention for my client using the medium I was assigned.

            This assignment has impacted me by giving me incredible insight as to what my future as an OT will look like. I will be using my creativity to create and implement interventions that are meaningful to my client in order to help them get back to the activities they like to do in their everyday life. Projects like this make me fall more in love with the profession of occupational therapy and increase my confidence that OT  is the perfect fit for me.

Bonus Activity - Memphis Rolling Grizzlies

Memphis Rolling Grizzlies 

On May 30, 2018, my class and I attended a Memphis Rolling Grizzlies practice at the Glenview Community Center in Memphis, Tennessee. I have lived in Memphis basically my whole life, and I was totally unaware that there was a professional wheelchair basketball team in the city. Having the chance to watch these men practice a sport they loved was so inspiring and motivating. There were men of all different sizes, races, and levels of functionality. Some had suffered from spinal cord injury and were paralyzed from the waist down. Some had congenital conditions that prevented them from playing sports on a regular team. Some men were walking, and some couldn't even move their legs. Despite all these differences, these men come together weekly and transfer into their special basketball wheelchairs and do incredible things. I was utterly amazed by the strength and endurance these men possessed. I found it so inspiring that, although there were many debilitating injuries, these men were passionate about the sport and loved coming alongside their friends to play basketball. There were extreme examples of sportsmanship shown when someone would score a point, and everyone would rush to help if someone got knocked over in their chair. I truly felt welcomed into their practice and was given the opportunity to ask if I had any questions at all. After their practice ended, each player offered up their basketball wheelchair for me and my classmates to try it out. They really made it look easy! It was so hard to control the wheelchair, and I had extreme difficulty propelling myself fast and handling the basketball. The men of the Memphis Rolling Grizzlies are truly gifted in what they do.

My whole take-away from this experience is that I should not look down on someone who is disabled. I shouldn't belittle them or think that because they are disabled that they are unable to do anything. I shouldn't automatically think they are weak or fragile- some of the men on the team are stronger than I will ever be. As a future occupational therapist, it's important I help find things that those struggling with disabilities truly adore. I need to find the things that are meaningful to my client and bring them joy. I can help my clients adapt and do the things they want and love to do. It was important for me to see the Memphis Rolling Grizzlies because it changed my perspective on just how much someone who is in a wheelchair can accomplish if they are doing what they love. I hope one day to see the Memphis Rolling Grizzlies in action again! 

Neuro Note #3 - TransFatty Lives

http://www.acapela-group.com/wp-content/uploads/2015/04/transFatty-lives2.png

Description

TransFatty Lives is a documentary on Netflix about a man named Patrick and his battle with ALS. Patrick is an artist and filmmaker from Maryland. In Spring 2005, he was diagnosed with Amyotrophic Lateral Sclerosis and was given 2-5 years to live. ALS is a neurodegenerative condition that essentially unplugs your brain from the rest of your body. Physically, the muscles in your body lose their ability to work over time, but cognition is not affected. The first symptom of ALS Patrick experienced was his leg began trembling on a trip. Eventually, he began stumbling and falling, and his gait became affected. Being the filmmaker he is, he decided to film his life and the struggles of himself and his family as they dealt with ALS and the destructive path it took debilitating Patrick. He decided to make an art project from his struggles. A few years into his journey with ALS, Patrick met someone and they fell in love and had a child whom they named Sean. Sean became the spotlight in Patrick's life and the whole reason that Patrick fought as long as he did to live.

The documentary showed how serious ALS became once Patrick required a feeding tube and ventilator. He lived for a while in a nursing home, which was emotionally difficulty because of how young Patrick was. In this nursing home, Patrick hit an all time low, mentally and physically. His desire to live was decreasing and he was wanting to die. He received the opportunity to travel to a specialty home for those living with ALS, and once he moved there, it's like his life started all over again. He was able to travel and participate in activities and events. It was such as contrast from laying in the hospital bed all day everyday like he did in the nursing home.

Why I Chose This

Ever since I heard about ALS, I have become interested in learning what day-to-day life is like for patients and caregivers. TransFatty Lives gave me that inside look on what life is like with ALS. Being interested in the neuro aspect of occupational therapy, this was especially interesting to see what my future clients may be dealing with. I learned so much about ALS and some of the battles that are faced daily- emotionally and physically.

Refection

TransFatty Lives was the perfect mix of beautiful, inspiring, heart-wrenching, and weird. The documentary did a fantastic job in capturing Patrick's true personality, and the film's unique and artistic aspects was a reflection of him. It was incredibly hard to watch the deterioration of Patrick and the reactions from his family and caregivers. I could truly feel the love Patrick's family had for him as I watched them assist him with bathing, toileting, and feeding. Patrick's personality and outlook on life was incredibly inspiring. The bravery he had to film himself in his lowest, most vulnerable points of his life is something I  don't think I would ever be able to do. He had the absolute best attitude, and his use of humor probably made it easier for everyone around him to cope with the circumstances. One of the biggest take-aways from this film was a quote from Patrick himself that was translated on his communication board; it is as followed:

"When you can't help your circumstances, you might as well go with it and stay positive."

Handsome Cargo (Producer) & O'Brien, P. (Director). (2015). TransFatty Lives [Film].

Joe O'Brien Reflection and Occupational Profile

Summary
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	Reason the client is seeking OT services and concerns related to engagement in occupations (may include the client’s general health status)	Client has Huntington’s Disease. Experience chorea which is getting progressively worse, mood swings, forgetfulness, disorganized, easily frustrated, losing weight rapidly
	Occupations in which the client is successful and barriers or potential barriers to his/her success in those occupations (p. S5)	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
	Personal interests and values (p. S7)	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
	The client’s occupational history/life experiences	Boston Police Officer, married to a loving wife, has 4 children and a daughter in law and grandchild, mother also had Huntington’s disease
	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: 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
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	Lives on the first floor of his home	Home is 3 stories, Neighborhood is very busy and often cannot find parking in front of his house- sometimes has to walk blocks
	Social	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	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
	Cultural	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	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
	Personal	Mid 40s, Boston police officer, Middle Class	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
	Temporal	Spends time with family, working, enjoying baseball games, and hanging out with friends at the bars	Client realizes Huntington’s disease is fatal and that his time is limited
	Virtual	Family has access to technology such as television and iPhones	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
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)	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.