A reflection on "Facing Death Full of Life" from Danielle Valenti's TedTalk
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| Retrieved from: Huntington’s disease: a rare cause of dementia — DPUK (dementiasplatform.uk) |
To further my learning, I listened to the TedTalk "Facing Death Full of Life" by Danielle Valenti. Danielle talked about a terminal disease that her mom kept secret and lived with to protect Danielle. This disease is Huntington's Disease or HD for short. HD is a disease that is inherited in which nerve cells in the brain break down over time. HD is a rare disease and around 30,000 people are diagnosed with it in the United States. A child has a 50% chance of inheriting the condition from a parent that is diagnosed with it. A person diagnosed with this disease will also eventually be 100% sympathetic. Danielle mentioned that some people describe the disease as a combination of Parkinson's, ALS, and Alzheimer's. She also mentioned that "back in the day", people called it the "devil's disease". She continued to talk about her mom and how she was eventually unable to do basic tasks. She then made the decision to take her mom to a nursing home that was for HD clients. Her mom was not happy about this and did not want to spend the rest of her life there therefore she refused all food that was given to her. Her mom eventually passed away.
In my Neuro Aspects class, we learned that there is no cure or treatment for this disease. However, we did find out that there is genetic testing available. In my class, we also talked about "premanifest" in relation to this condition. Premanifest is where an individual knows that they have the HD gene, however, they are not showing any signs or having any symptoms. This ties back to Danielle. Danielle decided to proceed with the genetic testing, predictive testing as I learned from class, after her mom died, to see if she had the gene. The tests came back and showed that Danielle indeed does have the gene however, she is not experiencing any symptoms. The symptoms could show tomorrow, a week from now, or even years from now. After Danielle found out that she had the gene, she was upset and felt bad for herself. Although some days were better than others, she found herself alone and not asking for help. One day, she decided that that needed to change and that she wanted to live again. She wanted to commit to happiness and joy every day. She broke her life into chunks and began to be true to herself.
I recommend others to listen to this TedTalk to further their learning on Huntington's Disease. Danielle did great explaining what the disease is and how it affected her mom's life and how it is currently affecting her life personally. One main reason I chose this video was that I didn't know much about the disease, and I wanted to listen to someone's story that is experiencing the disease. I first heard of Huntington's a few years ago. I thought it just caused someone to have strong muscle spasms. I had no idea that it has a genetic link therefore there is a strong chance of someone diagnosed to pass it along to their child. After listening to the TedTalk and talking about this disease in class, I feel more prepared and equipped as a future occupational therapist to work with clients and caregivers that are living with this disease.
Resources
Danielle Valenti. (2016). Facing Death Full of Life [Video]. TedTalk. Facing Death Full of Life |
U.S. Department of Health and Human Services. (n.d.). Huntington’s disease. National Institute of Neurological Disorders and Stroke. https://www.ninds.nih.gov/health-information/disorders/huntingtons-disease#:~:text=Huntington%27s%20disease%20(HD)%20is%20an,as%20well%20as%20other%20areas.
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