For my third Neuro Note, I watched the Ted Talk titled “Facing Death Full of Life” (2015). I chose to watch this because I know someone personally with Huntington’s Disease and because the topic is interesting to me. Another reason I chose to learn more about Huntington’s disease is because many health professionals are unfamiliar with what it entails, let alone how to treat it; I do not want to be one of these people. Instead, I want to be equipped to provide the best care in regard to occupational therapy when serving these clients and their families. During the video, I took notes and tried to think of ways it tied into the Neuro Aspects class and occupational therapy to enhance my learning and stay engaged.
This Ted Talk was done by a woman named Danielle Valenti whose mother had passed away one year before she presented the talk. She informed the audience that her mother had Huntington’s Disease, which means that she had a 50% chance of getting the disease herself. Danielle explained that she was nervous to get genetic testing at first, but finally decided that she needed the clarity it would provide. Shortly after, she received the news that she tested positive for Huntington’s. This means at some point she will develop Huntington’s herself (people usually get diagnosed between 35-55 years of age). She then discussed her initial feelings of hopelessness and followed with how she has worked to manage them. Making a commitment to and investing in happiness when having a non-curable, neurodegenerative disease is one goal she listed. Danielle mentioned she works to execute this goal by breaking up her life into smaller stages that are more manageable, rather than looking too far ahead into the future and its “what ifs.” In addition to this, she stated that she tries to find small things that make her smile and asks for help when she is in need. All of these goals and strategies remind me of things that an occupational therapist could work on with a client who has Huntington’s.
Combining this Ted Talk, my previous experience learning about this disease and my completed case study on someone I know with this disease has deepened my understanding of this disease and the potential implications it has regarding occupational therapy. The speaker talked about how this disease is often thought of as a combination between Parkinson’s, Alzheimer’s and ALS. This is similar to what we discussed in class, which was that Huntington’s has a physical, cognitive and psychological impacts. Another way this video overlapped with what I had learned previously is that suicidal ideation is relatively common symptom with Huntington’s. Danielle spoke about her mother ending up in a skilled nursing facility that specialized in Huntington’s disease, and shortly after that she decided to stop eating in efforts to end her life. 67 days after she made this choice, her mother passed away. Not only did we learn about depression and suicidal ideation as one of the associated symptoms in class, for my case study (about a woman I know personally with Huntington’s), she also attempted to stop eating in efforts to end her life. Learning about these two stories emphasizes the psychological changes Huntington’s can have on someone and how devastating the disease can be.
I would recommend this video to others who are looking for a more personal perspective on Huntington’s Disease. The speaker did a great job executing the sharing the information she provided!
A hyperlink to the video is provided here:https://www.youtube.com/watch?v=6JRwCdmewl0
Reference:
Valenti, D. (2015, December 04). Facing death full of life. Retrieved August 14, 2019, from https://www.youtube.com/watch?v=6JRwCdmewl0
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