I watched a TEDtalk called “The Innerkid Philosophy” given by Kristen Powers who is a teenager who lost her mother to Huntington’s Disease. Her mother was diagnosed with the disease in 2003. By 2005 the physical symptoms were becoming evident and eventually she was deemed emotionally unfit to stay in her home. In January 2011 her mother passed away. After her mother’s diagnosis she and her brothers realized that there was a 50% chance that they would have the disease as well, but they would have to wait until they turned 18 to be genetically tested. Kristen speaks on how she was faced with many difficult topics at the age of 12. She was faced with the thought of potentially having to care for her siblings if they had the disease as well as wondering if a future husband would have to care for her if she had the disease. Knowing the short lifespan following a Huntington’s Disease diagnosis she thought about the possibility of having her independence and life taken away so soon.
Facing these thoughts led her to the idea of the “Innerkid Philosophy”. She remembered always hearing adults talk about their childhood being the best time of their lives and she did not want to lose that spark of childhood as she began adolescence. Kristen wanted to have fun, but also save the world in the process by making an impact. Since she could not be tested for the disease for 7 more years she decided to embrace the “power of not knowing” and make every moment matter.
In past classes I have learned about the medical aspects of Huntington’s Disease, but have never really focused on the emotional impact it can have on the family. This TEDtalk had an interesting perspective since it came from the teenage daughter of a woman who had Huntington’s Disease. I also thought this was an interesting perspective given Kristen had yet to be tested for the disease she was able to speak on the challenges as well as the positives to not being able to find out if she will get the disease due to genetic testing laws (which I did not know you had to be 18 for). I chose to watch this video because the perspective was interesting to me. Knowing that Huntington’s Disease is genetic, hearing the daughter’s thoughts and feelings about her past experience with her mother as well as her possible future was very enlightening and something that I think is important, as a future OT practitioner, to understand. I think stories like this help remind people that often times with a client, especially clients with a neurological condition, the family is also important to think about as well so that they are not over burdened with their new roles as caretakers. After watching this TEDtalk I am going to be watching Kristen’s documentary about her journey and decision to get genetically tested for Huntington’s Disease.
Link to Kristen’s TEDtalk: https://www.youtube.com/watch?v=l6JiBiMqiI4
Kristen’s Documentary: “Twitch”
Powers, K. (2012, April 13). The Innerkid Philosophy: Kristen Powers [Video]. Youtube.
No comments:
Post a Comment