Inside the O'Brien's

I just recently read the book Inside the O'Brien's and, wow, it was tear jerker. This book is about a middle aged man living in Boston who inherits Huntington's Disease. In this particular case, Joe, the main character, inherited the disease from his mother. With Huntington's, if you have the disease, each of your children have a 50 percent chance of inheriting the disease as well. Joe and his wife had already had 4 children before Joe started showing symptoms and found out about the diagnosis.
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

	Reason the client is seeking OT services and concerns related to engagement in occupations (may include the client’s general health status)	Client is seeking to improve symptoms of Huntington’s Disease because the symptoms are affecting work, driving, and social participation
	Occupations in which the client is successful and barriers or potential barriers to his/her success in those occupations (p. S5)	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.
	Personal interests and values (p. S7)	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
	The client’s occupational history/life experiences	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
	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)	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
	Aspects of the client’s environments or contexts, as viewed by the client (p. S28)	Supports to Occupational Engagement:	Barriers to Occupational Engagement:
	Physical	It seems as though he can get around on the floor of the home he and Patrick and his wife live on, pretty well.	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.
	Social	Joe has the support of his wife, his children, and his best friends/co-workers	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.
	Cultural	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.	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
	Personal	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	He is very caring, but sometimes his mood swings and overall temperament can get in the way. He also likes to drink almost daily.
	Temporal	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.	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.
	Virtual	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.	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.
	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 goals include: ·      Muscle strengthening (core) ·      Walking without the use of a walker or wheel-chair, even though it may be needed as the disease progresses ·      Finding ways to cope with his new, permeant lifestyle ·      Reducing the effects of chorea or finding ways to adjust to the involuntary movements

Parkinson's Disease

Mileha Soneji: Simple hacks for life with Parkinson's

Soneji, M. (n.d.). Simple hacks for life with Parkinson's. Retrieved from https://www.ted.com/talks/mileha_soneji_simple_hacks_for_life_with_parkinson_s

In this TedTalk, Mileha Soneji talks about her uncle who was diagnosed with Parkinson's Disease. She talks about how her uncle went from being a confident, independent person, to someone who had tremors, as a symptoms of this disease, with caused issues with tasks as simple as drinking coffee. Therefore, this resulted in him being less independent and somewhat embarrassed. She also discusses how her uncle used a walker to get around, and how for each turn he took he had to take one step at a time rather than being able to turn in one fluid motion, which took a significant amount of time. Mileha wanted to help her uncle and others with Parkinson's so she set out, not to "cure" Parkinson's, but maybe make it a little more manageable.
With her uncle in mind, Mileha invented "the no-spill cup." It is a cup that is rounded off around the rim, so if liquid reaches the edge, it will not spill out. It also looks like a normal cup so it cuts down on the attention that could be drawn to them in a public setting. This could be very beneficial to individuals with tremors, like her uncle, so they can enjoy coffee or tea whenever they want.

I chose to do this assignment on Parkinson's disease, because I honestly find it very interesting. I actually had a class this morning where we briefly discussed Parkinson's and it sparked my interest immediately. I know a few people who have Parkinson's disease, and again, I found it so interesting, and have always wanted to learn more. Therefore, I took this opportunity to do just that!
This is also how I furthered my learning, I tried to think about some of the different aspects we discussed in my pathology class related to Parkinson's disease when listening to Mileha talk about her uncle, and also watching the videos. I was able to make connections between what we learned in that class to what she was saying and it definitely helped with learning the overall concept of Parkinson's disease.

I have learned that Parkinson's Disease is a disease that causes degeneration of the nervous system. It can cause tremors when the person is sitting still, or when they are about to initiate a movement. However, during a fluid motion, the tremors subside. Mileha gave the example of her uncle trying to walk downstairs. She actually has a video of him doing this, and she said, during her lecture, that she couldn't believe he was about to do this without his walker. Miraculously, he was able to do this with no problem at all. There is also something called "freezing" that is associated with Parkinson's disease. This happens when the person is trying to initiate a movement or immediately finishing a movement. They literally "freeze" in that moment and they want to do the specific movement or motion but it just doesn't happen for them as soon as they decide to move. It may take a moment to start or they may want to continue, but they just can't.
Again, with her uncle in mind, Mileha set out to help him walk on flat ground. Like I said before, he had no problem with stairs but flat ground was a different story. She tried something she called "staircase illusion." She literally made the flat ground look like a staircase using everyday equipment that most people have around their house. When her uncle stepped up to that part of the floor, he was able to walk with no problem!

I really enjoyed this TedTalk and learned so much about how to simply make someone's life more meaningful to them. Mileha made it a point to say she didn't make the illusion out of google glass or something complex, she was a low tech as possible with her invention, and it made a HUGE impact in this person's life. I admire her diligence, and practicality with her inventions because you could tell, she thought of not only the objects being helpful, but they weren't "flashy" or "over-the-top" so therefore, they were very beneficial in helping individuals with this disease feel more confident and independent. This is something that OTs put a lot of emphasis on when working with clients, we want to help people be as independent as possible, and help them do things they love and find meaningful.

If you would like to learn more, I highly suggest watching this TedTalk! It be found by using the link below.

 https://www.ted.com/talks/mileha_soneji_simple_hacks_for_life_with_parkinson_s#t-301335

Myasthenia Gravis

 "Sheryl and Myasthenia Gravis: How I cope!"

 B. (2014, October 23). Sheryl and Myasthenia Gravis: How I Cope! Retrieved from https://www.youtube.com/watch?v=UZU2nTf6_cc

This video is about a 17 year old girl named Sheryl who was diagnosed with Myasthenia Gravis at the age of 16. Sheryl described her initial, noticeable symptoms being her eyelid drooping and the muscles in her mouth not working properly, which caused her to have difficulty with eating and keeping liquids in her mouth. She then noticed that her eyes had gotten worse so she went to see a specialist. The specialist did a specific test where they put ice on the eyelid, and if the muscle is weak, it brings the eyelid back up, in individuals with myasthenia gravis, and it worked with Sheryl. He told her she needed to get tested to confirm, so she did. 

I chose to do this assignment on myasthenia gravis because my grandfather was diagnosed with this disease, years before he passed away. I was very young when all of this took place, and I have always been curious as to what exactly myasthenia gravis was. I couldn't pass up the opportunity to learn more about it, because now I am old enough to understand, and I am pursuing a career that will amplify that understanding. This is also how I furthered my learning on this topic, I spoke with my dad about some of the symptoms my grandad had to see if they correlated to what Sheryl reported. My dad said that my grandad had the drooping eyelids, just like Sheryl, and he would also report weakness in his hands and fatigue very quickly after exertion. 

I have learned that myasthenia gravis is a chronic autoimmune neuromuscular disease characterized by varying degrees of weakness of the skeletal muscles of the body. The skeletal muscles are voluntary muscles which means these are muscles that work when you tell them to, you voluntarily use these muscles, and they are part of your somatic nervous system in your body. The skeletal muscles that can be affected by myasthenia gravis are the eyes, mouth, arms, legs, fingers, neck, and other muscles. A neurotransmitter is a chemical in the body that is responsible for human behavior. There is a neurotransmitter called acetylcholine that is associated with the voluntary muscles of the body. Acetylcholine has receptors that are blocked by this disease which can keep the muscle from working properly. 

According to Sheryl, once a person with myasthenia gravis uses their muscles, and becomes fatigued it is difficult for them to "recharge their battery" so they may need to go into the hospital for what is called a IVIG (intravenous immune globulin) which is a sterile solution that contains concentrated antibodies from a donor. This solution can be used to treat immune disorders and enhance immune response to illnesses. However, it is not always recommended because it has a short term affect. Another treatment for myasthenia gravis is plasmapheresis. This is when blood cells and plasma (found in the blood) are separated and the abnormal antibodies are removed from the bloodstream. 

Sheryl reports that this disease has affected her life with some of the things she likes to do such as softball and school related activities. As an OT student, these terms relate to me as ADLs and iADLs. These are the activities that are meaningful for Sheryl and that is what the OT could work on with her, if she were to see one.  

This was an inspiring story, and I loved seeing how positive she was about having to alter some of the activities she likes to do. However, just because they had to be altered, didn't mean that she stopped doing them altogether which I thought was very brave and worth recognizing. If you would like to take a look for yourself to learn more, you can find Sheryl's story on YouTube by typing in the title provided above. 

Framework of Doing-Being- Becoming

Today, I chose to dive into learning about a theory called the Framework of Doing-Being-Becoming. It is a frame of reference theory (FoR), hence the word framework in the name. This framework can be described by using the three words in the title. "Doing" relates to the occupations and occupational performance of the client or individual. "Being" refers to relating to yourself and reflecting on who you are a person. When doing this, you can determine what your roles and responsibilities are. "Becoming" refers to how you transform into new roles by altering or changing your priorities and redefining your values. This framework can be used for adolescents, adults, and elderly individuals with all types of disabilities. This theory is considered functional when the individual can do, be, and become. They can relate to their occupations and occupational performance, they can be themselves, and they can transform their priorities to live their best life despite their disability. An OT can assess the individuals occupational performance by working with the individual on occupations. Three terms I would define for this theory would be occupational performance which is the ability of the individual to carry out specific occupations, self-actualization which is the want or need or drive for someone to do something such as a talent, and occupations which are activities that an individual finds meaningful.

Not Everyone Understands Health Lingo

Today we talked about something called health literacy. By definition, it refers to the degree to which individuals that the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions. To me this speaks volumes. It is something that makes sense when you think about it, but the problem is that health care providers don't always think about it. Health literacy could refer to someone not having an appropriate reading level to fill out medical forms to someone who just simply doesn't have their glasses with them so they may not be able to see the form, but maybe they are afraid to speak up and inform the healthcare provider. As healthcare providers, there are ways that we can help these clients gain the knowledge they need to understand about the situation at hand. We need to be cautious of the words we use and we need to make sure that we check for adequate understanding when communicating with clients. We also talked about occupational alienation which is experience devoid of meaning or purpose, a sense of isolation, and powerlessness, frustration, loss of control, or estrangement from society or self that results from engagement in occupations that do not satisfy inner needs related to meaning or purpose. So in everyday terms this is a term that refers to isolating an individual based on a disability or social issue they may have. This can be a problem for the society as a whole and the individual, and can also reflect badly on the society, in my opinion.

Observing the Gray

I did a TON of shadowing hours, 450 to be exact,  in various clinics before starting the OT program I am currently in. I observed in various settings, several different age groups, and many different cultures and ethnicities. If I knew then, what I know now, some of the activities I saw could have raised some question with me. Not at all because the facilities and personnel were doing anything "wrong" necessarily, but because now I know what a preparatory activity is and that there is a length of time that is appropriate for each client. I also know that it is something that is done usually at the start of the session and it is not be used as the only therapy activity during a session. Preparatory activities can include things such as an arm bike, a finger ladder, resistance bands, etc. As OTs, these different activities can be very beneficial, however, our job is to find what is meaningful to the client and also incorporate those into their therapy. It can be a challenge sometimes to motivate clients to do certain activities, but it will be so much easier for them to have that drive if we incorporate activities they are interested in. Some preparatory activities can become boring to the client and they quickly loose their motivation to even come to therapy, and it is very important for their improvement and quality of life.

Assistive Technology

Recently in one of my OT classes, I have been learning about assistive technology. For those that do not know, assistive technology is an item or piece of equipment that assists individuals with disabilities so they can better function with everyday activities. If you are like me, when you see the word technology, you automatically think of something computerized. However, assistive technology does not only consist of these types of things. Assistive technology can consist of anything from a laptop computer or iPad to a pencil grip for individuals with less hand strength. In my opinion, that is what makes assistive technology so interesting. It is not something that has to be complex, although it can be, it can be simple and easy for anyone to use and still be extremely beneficial.
One of our assignments for this particular topic was to watch a TED talk titled "Why we need Universal Design," about a guy who is deaf and created his own piece of assistive technology. He informed his audience via sign language and an interpreter, that his mother, who was also deaf, loved going to the movies. However, movie theaters are not very accessible for individuals who are deaf. They usually had a pair of very non-attractive glasses that could be worn with subtitles, but they weren't very desirable. Therefore, this guy set out to make this even better. He used google glass so that individuals could download an app and go into any movie theater and have the movie script with them so they too, could enjoy the movie. The remarkable thing about this, to me, was that this guy was not only thinking about people who are deaf, he was thinking about everyone while inventing this product. He talked about how it would be accessible for someone that wanted to see a movie in a different country, but needed it to be in their own language. That was something I didn't think about while he was explaining his product. This is an example of how assistive technology can help anyone, even people who do not think they need it. I have really enjoyed learning about assistive technology and I can't wait to learn more!