Media Project Reflection

As I started this project about my client Maurice, it was hard for me to pick just exactly what I wanted to do. I would think of one thing and then speculate that it wouldn't be a good option because he wouldn't be able to do "fill in the blank" or had problems with "fill in the blank". I think my ah-ha moment came when I thought to myself, "when I'm out in the field with a client, I will be able to physically be with them and see their abilities and that's just not possible in this situation." So I digested as much of the information as I could, and finally decided that I would do something that integrated in multiple aspects of Maurice's symptoms and problems and do the best I could with the written information I had. I focused on what the client's main goal was at the time, which was going home, and problems he had like his speech, expressions, low vision, and movement. I turned my assigned material (a Pringle's can) into a multi-use media that could help Maurice hopefully maintain some strength and ROM in his arms and legs by making it into a very very light weight that could easily be tied on to any of his extremities. Also, on the outside of the can, I included hopefully easy to see numbers from 1-10 for pain level and simple yes/no/maybe responses that he could point to if he was having difficulty communicating that day. On the top of the can, I also included some drawn emoji's with faces that could maybe help to get across how he was feeling if he couldn't show the expression or emotion and couldn't verbally express it clearly as well. 

I think that now I have an even deeper understanding of Parkinson's disease and the difficulties that come along with it. I researched a lot about the disease, the stage that I thought Maurice was in, and how I as an OT could help him in his current state. I also learned that sometimes great ideas aren't just going to pop in your head right from the beginning, but the more you search and find out about the client and the condition, the more you will be able to bring to the table to hopefully help the client. From this assignment, I will always take with me that you need to make sure you educate yourself on the condition the client is dealing with. Also, to always account for the many factors that every individual person will have based on their lives, diagnosis, and symptoms. This assignment really made me think and intensified my already huge want to know and understand more and to prepare myself to help my clients as much as possible.
 

Neuro Note #5

For my last neuro note, I chose to watch a video about a lady named Holly who was diagnosed with Myasthenia Gravis. She was diagnosed in August 2015 at 40 years old while being a wife and mother of 7 children. She had complained to her primary care doctor for a few years about feeling fatigued, but thought that it was just from getting older and everything that she had going on in her life. Then, she noticed something new. Primarily while watching TV at night and at some other times, Holly was experiencing double vision but didn't know the correct word for what she was experiencing. She tried wearing glasses for this new vision problem, but they didn't seem to help any. Also, she had noticed some frequent bouts of choking that she found to be unusual and alarming. She went back to her primary care doctor and, after figuring out that what she was experiencing was double vision, he diagnosed her with MG and referred her to a neurologist. The neurologist ran blood work that came back normal but from her symptoms he still thought that she had MG. Holly was then given medication that she was told to take when her symptoms arose and if the medication worked that would confirm that the diagnosis was correct. One day when she was experiencing double vision while driving, she took some of the medication and she said when she could see the individual leaves on some beautiful trees that she was passing instead of just green blobs, she knew that the medication had worked. 

The neurologist first thought that she had ocular MG, but over the next year her symptoms progressed very quickly. She wasn't able to stand to wash dishes, cook dinner unassisted, fix her own hair, speak clearly or sit with good posture, and her family didn't allow her to go places by herself because she needed help walking and lifting things. After seeing this progression, she was then diagnosed with generalized MG and given new medications. After trying different medications that caused severe side effects, Holly received an IVIG treatment before a surgery unrelated to her diagnosis. This treatment made her feel great and she knew after being able to cook Thanksgiving dinner that year that this was the treatment for her. She received it for 5 months with the last treatment being in March 2017. Her and her family moved across the country for her husband's new job and she hadn't established a new place to receive her treatment. All of her symptoms had gradually came back over the few months without treatment, but she was optimistic about the future and hoped she could start getting it again soon. 

Her biggest advise to others with Myasthenia Gravis was to learn as much as they can about the condition and to always have an advocate that has your medical information and knows about the condition as well. She said there were times where she was so debilitated that she couldn't communicate with medical personnel and they might not always know how to treat a person with MG. Also, she said just because a doctor doesn't see all your symptoms in one appointment doesn't mean that you don't know what your talking about and that it is all in your head. Listen to your body and don't be afraid to speak up when you know something is wrong. Holly is a very brave and inspirational woman and I hope that she has since been able to get the treatment to help her live a more functional, productive, and enjoyable life. 

Resource:

Raremark Health. (2017, July 13). Holly's story: My experience with MG treatments. [Video]. Youtube. https://www.youtube.com/watch?v=B8mF1sL5ZMM

Neuro Note #4

For my fourth neuro note, I watched a video on Youtube entitled "Living with Huntington's Disease". I chose this video because this is the next condition that we are studying in our course and I don't know much about it and I think watching videos of people in their everyday lives with these conditions really can open your eyes to what they have to go through. The video was from the perspective of a caregiver. Tammy Stewart takes care of her brother, Mike, who is in the late stages of Huntington's disease. He is almost fully dependent on Tammy and his mother, who also helped some, for making his food, helping him walk and transfer, and helping with his ADLs. He could still feed himself with adapted utensils, walk with a walker and assistance for safety, and communicate in barely understandable one word responses. Huntington's is a genetic disease and it is very apparent with this family. Tammy and Mike's father and sister had passed away from the disease, Mike is in the late stages, and Tammy, unfortunately, had got the diagnosis as well and is in the early stages. It gave the statistic on the video that a child has a 50% chance of having the disease if one of their parents suffered from it. 

It was very humbling to me that Tammy said that she would take care of Mike for as long as she could even with her own diagnosis. She was just having symptoms of tremors and mild depression at the time, but said that she was trying to have a positive outlook on life to keep her brain as healthy as possible. She was part of an experimental drug trial that would hopefully slow the onset of her symptoms and give her a better quality of life for more years to come than without the drug. She described Huntington's on the video as the "monster disease", which I can understand after seeing so many of your loved ones struggle because of it and then to get the diagnosis yourself as well. It was described as a disease that has some symptoms of Alzheimers, Parkinson's disease, and ALS all in one. There is no cure for this disease currently, but maybe one day with more advancements, something more can be done for people with this dilapidating disease. 

Resource:

STAT. (2019, December 4). Living with Huntington's disease. [Video]. Youtube. https://www.youtube.com/watch?v=7fNrzYEl9G0

Neuro Note #3

For my third neuro note, I decided to compile a list of some websites that gives some general information, insight, and support about some of the neurological conditions that we are studying in our course. It is a quick little guide to information about commonly heard of diseases and conditions. Something that I found very encouraging while making this list was the support that seems to be out there for those that suffer from these diseases and the support for their family and caregivers. I hope that it helps them to know that they are not alone in their disease and situations. I am definitely planning on looking more into how to get involved with some of these organizations and foundations.

1. Dementia - https://www.dementia.com/index.html

This website contains a lot of information to help people understand dementia better with its                         diagnosis, prognosis, progression, symptoms, and many more topics.

2. Traumatic brain injury - https://www.biausa.org

This resource contains information about brain injuries, helpful tips for caregivers and professionals, ways to give if you want to help, and testimonials of others and information for those with a brain injury.

3. Cerebrovascular accident (CVA or stroke) - https://www.stroke.org/en

This website offers lots of good resources for things stroke related. There is information about what a stroke is, life after a stroke, and help and support for people that have suffered from a stroke. It also offers healthy living tips and ways to get involved with stroke prevention and in the community.

4. Spinal cord injury - https://facingdisability.com

This website is full of resources that offer general information about SCI and bedsores, videos of experts and people with SCIs, and numerous resources for adaptive equipment, support, advocacy and many other topics.

5. Multiple sclerosis - https://mymsaa.org

This website has information about MS and many supportive resources for those that have MS. It offers a whole section of things for living with MS and there are also ways to donate and get involved.

6. Huntington's disease - https://hdsa.org

This source offers information about Huntington's disease and its symptoms and stages. It also has help to find places to receive clinical care and other support, tips for healthy living, and information about research being done for the disease.

7. Parkinson's disease - https://www.apdaparkinson.org

This website has information on Parkinson's disease, resources for those living with the disease, and updated research and webinars about it. There are also ways to get involved with local events for the disease.

8. Amyotrophic lateral sclerosis (ALS) - https://www.als.org

This is the official ALS website and it has all things that relate to the disease on it. Some of the main sections are entitled "understanding ALS" and "navigating ALS" and are full of good information and useful resources.

9. Myasthenia gravis - https://myasthenia.org

This website offers general information about the disease so a person could understand it better, along with treatment options and tips on management of the disease. It also has lots of information that will hopefully help a person live a full life with myasthenia gravis.

10. Guillain-Barrè syndrome - https://www.gbs-cidp.org/gbs/

This website has great information on Guillain-Barrè with a very easy to follow video on the disease. It is a foundation that offers support to those that suffer from this condition and has ways that you can advocate and volunteer to get involved with the community of people.