Neuro Note #4

My Conscious Decision

MamaJama · May 31, 2018. (n.d.). My Conscious Decision. Retrieved from    https://multiplesclerosis.net/stories/my-conscious-decision/

This blog post was written by a woman who is experiencing life dealing with multiple sclerosis. She talks about how during this 11 years of her diagnosis, she can tell you all of the things she has lost and what the disease has taken from her. However, she is so positive about it. She mentions how she doesn't want to dwell on what her life could have been or what she could have been doing because she knows nothing in life happens on accident. She takes her set backs and uses them as stepping stones. She mentions how she has learned what is important is to be genuine, smile at people and tell them that you love them because everyone deserves to be and feel loved. She wrote this post the night before her 45th birthday. She says that on this journey, she isn't taking anything that weighs her down. She wants memories and laughter and chocolate. 

I chose this because, like the other posts I have written about, she is positive and her outlook on life while dealing with a disease that is crippling is so positive. She focuses on the good; she is happy and while she can't do everything she used to do, she isn't useless. She isn't carrying the burden of "what if" around. It is really just so important to me to see people with a positive attitude. I like to think I am a positive person, and I would really hope that I would have the same sunshine-y attitude.

I think what I learned from this post greatly reflected what we had learned in lecture about multiple sclerosis. She doesn't mention which type of MS she has, but from the way she talks she never recovers to baseline. She has lost sensation on one side, she has problems with vision on one side and can no longer walk unassisted without a walker. one thing that really struck me was how she can't handle the heat anymore. I think that is interesting and I would want to know if she can't handle the heat from the disease and its affects or from the medications she has to help with symptoms from the MS. I would recommend this article to anyone, honestly. It is just a moving and uplifting post that just goes to show that even in the bad times, you can still be optimistic. 

Media Project Reflection

I think the most meaningful thing I learned through this assignment was just the endless amount of ways you could take something as meaningless as an empty soda bottle and turn it into something beneficial for someone. I also think it is amazing to see just how many ways you can fit an item to a person in relations to their diagnosis, their needs, and who they are as a person.

I didn't realize before this assignment just how complex a diagnosis can be and just how specific an occupational therapist really has to focus on when planning interventions. Barbara, my client, not only had less strength in her upper and lower body, but also fatigued easily. When it came to designing an intervention, that was something I had to consider was that she fatigued easily and couldn't be up standing and moving around for a long period of time. It is like a puzzle and you are trying to make that last piece fit in; you have to figure out the "just right challenge."

Completing this assignment made me really feel like I was in the mindset of an occupational therapist. I really felt my OT think kick in when I was thinking of the different ways to use a plastic soda bottle. Making it into a craft, which was something that she enjoyed doing, and turning the empty bottle into a flowerpot that could be enjoyed by not just herself but also her family was a way to address her goals and do something that kept her interest. I think this assignment helped me shift my headspace into thinking of an OT more so than just a student.

Neuro Note #3

From high school to nursing home: 20-year-old learns to cope with fatal disease

Sioux City Journal
siouxcityjournal.com

This was a post made online in the Sioux City Journal about a young girl, Desiree Buettner, who began showing the symptoms of Huntington's disease at 18 years old. Her mom passed away form Huntington's when she was only 26 years old. Even though Desiree knew that there was a good chance she would get the disease, it still left her feeling depressed when having to cope with the symptoms at such a young age. She had to move into a skilled nursing facility because she needs so much assistance with tasks such as grooming and she even has difficulty talking. The staff has done a lot to make her feel comfortable inside the home, because she is by far the youngest resident. They made a bucket list with her and have been doing things on it like going to Disney World. Her room is decorated with posters and she has video games to play that not only entertain her, but it also keeps her hands and fingers moving and working those fine motor muscles. It mentions how she couldn't play sports because she was so clumsy (from the Huntington's) and she never got the opportunity to graduate high school. That is a big lifestyle change for a 20 year old girl, especially a young girl who knows her fate, but she is taking it in stride and dealing with it in the best way possible.

I chose this post because this girl is not that much younger than me. I know how much I have gotten to experience since high school and the opportunities I have had to be out on my own and learn and try new things. For her, this isn't an option. She can't be "out on her own." I just relate to it because I couldn't imagine, at my age, to have to live in a skilled nursing facility. I have spent a lot of time in SNFs, and they are not an environment for a young girl. 

What I learned most through reading this is how these types of diseases do not care. They present in someone when they want and how they want. This girl, who knew what her odds of developing this disease were, didn't even get to finish out high school before it took over to the point of where she needed assistance with almost everything. I also think it is interesting that her mom had juvenile Huntington's as well. While we know the this disease is a family disease, I was surprised to see that Desiree also presented with juvenile Huntington's since the disease usually doesn't present until the 30s. I also learned how important it is to have such a big support system; whether that be family, caregivers, or friends it is important to have people around you that care and want to help you experience all that life can offer when what is inevitable is known. The staff at her skilled nursing facility took her to Disney World because she didn't have the chance to go before. they rode rides and stood in lines for hours so she could get pictures with all of the Disney princesses because that is what SHE wanted to do. I think it is special to see that there are people willing to go to that extremes to help people and put a smile on someone's face.

Neuro Note #2

Ray's Little Ride
One Year

Rayslittleride. (2016, May 24). One Year. Retrieved from https://rayslittleride.com/2015/12/16/one-  year/

t    This blog post was written by a man who is telling his story of how his life is 1 year after the diagnosis of ALS. He talks about how he went from delivering babies and being on call at work to having to switch to strictly clinical work and then quitting altogether due to symptoms from his diagnosis. He went from being an outdoorsman hiking and adventuring to needing help getting dressed. he discusses how he is much slower now. He mentioned how he used to always have to wait on his wife to get ready whenever they went out, but now even if he starts getting ready before her she is still ready before him. His world flipped upside in less than a year. He discussed how hard it was for him to tell people. He didn't even know what to say and he has trouble saying "I have ALS." Everyone reacts different to being told about the diagnosis; some of his family blatantly ignored it and said they weren't going to deal with it until they had to while others didn't really understand what ALS was and had to research it before calling back being completely off-beaten by it. He talked about how they were having to modify and make adaptions not just to his clothing, but also their house. They lived in an old house that didn't have a bathroom downstairs. Installing a lift chair was too expensive, so they were having to see how they could make other adaptations for him to be able to be bathed ad showered since the stairs were beginning to be out of the question for him. 

     It amazes me his positivity and strength he shows throughout his blog post about facing this disease. The mental aspect is such an important part in any progressive disease like this, that has no cure. He ends his post by saying that despite everything, he is still standing. He might be a little bruised and beaten now, but he is still standing. His outlook on his life is remarkable; he sees it as a new adventure everyday that they have to face. I think an attitude like that is what keeps people like him fighting and carrying on, despite the fate they have been dealt.

     I chose this because I think it is so important to see positivity and light in something others see as dim and hopeless. His outlook of facing every day head on as a new challenge to face and overcome is so special. it is an attitude I would hope I would have if I were ever to be in a circumstance such as him. we are all dealt cards in life and we have to play that hand. I just hope that I can play my hand as optimistically as Ray.

      In this post you could see the deficits the disease was starting to leave Ray with. He no longer could dress himself and needed adaptive clothing to make dressing as easy as possible. You could see his physical health decline throughout his story of a year of his diagnosis. Also, you could see how quickly the disease progressed with him. His diagnosis was in the end of December and he already had to leave his job by the next August. Also, you could see the family dynamic that is in Ray's life. His family was there around him to help and comfort him and you can see how that has helped him throughout this process. Hearing something from a first hand experience always makes it more personal and you get a deeper understanding of how the disease plays a role in the daily life of someone. It isn't just words on paper anymore, it is someone who is a father, husband and friend.