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!

What is the OTPF and what is its purpose?

The OTPF stands for The Occupational Therapy Practice Framework: Domain and Process. This is a document that can be used by OT health professionals, students, educators, researchers, etc. It guides these individuals during OT practice, and addresses what the OT is concerned about with a client and what they want to address. It gives the individuals I mentioned above, a common language to refer to along with a standard communication. It helps us focus on occupations, health and wellness, and it highlights our scope of practice. Furthermore, scope of practice relates to what we as OTs are qualified and allowed to do with a client. The OTPF also addresses the OT process which is what happens from start to finish with a client. The Framework can also helps to have a top down approach which means we start our services by finding out what is meaning to our client in the beginning.

Era Presentations for OT

Today in my foundations class, we presented era presentations. We broke up into teams and we were assigned a specific decade to present on. Our goal was to talk about how different events, technological advances, healthcare movements, politics, etc impacted the era and how it did or could impact the profession of OT. The time frame we focused on was from the 1940s to 2010 and we also talked about what was going on in our world today.
It was very exciting and fun to see everyone dressed up to represent their era, and it was also a very fun way to learn this information. One thing that really stuck out to me was the fact that throughout most of the decades we talked about today, women weren't allowed to be apart of the workforce. Today, the profession of OT is predominately women. For example, we have a class of approximately 40 students and only two of them are guys. So, even though we have always known this statistic about women and the workforce, it really stood out today in way that can be recognized as our society growing and adapting.
Also, as we moved along the continuum, we talked about the technological advances of today's time. Some people see technology as a negative and some see it as a positive. Well, today during our presentations, we watched a video that made me, as a occupational therapy student, see technology as a definite positive. It made me excited for technology and its role in this profession. We watched how individuals with specific disabilities could use technology in a way that helped them do different activities that were essential to daily living, and also fun, leisure activities that so many of us take for granted.