Neuro Note #2: What Are You Doing for the Test of Your Life?


    In order to further my understanding about Huntington’s disease, I listened to a podcast from “This American Life” titled “What Are You Doing for the Test of Your Life". The podcast opens with a woman named Kelly who is waiting on a genetic test that will let her know if she has the gene for Huntington’s disease. The podcast goes on to explain that Huntington’s disease is a neurodegenerative disorder. Kelly is the youngest of 6 sisters. Their mother had Huntington’s which gives each of them a 50% chance of also getting diagnosed with the disease. Two of her sisters are currently showing signs.

     Kelly recorded her experience of getting tested on an audio diary in which she shares on the podcast.  She first interviews her sister who is showing signs. Her sister, Kathy, is in her 40’s and talks about how she finds herself not remembering how to do things, not being able to get to the bathroom fast enough, and also struggling to find the words to articulate what she needs. She explains that she hasn’t gotten tested because of insurance and fear that she would feel she had wasted parts of her life.  Kelly discusses with Kathy her memories of their mother. Her Mom was starting to show symptoms when she was pregnant with Kelly and went to a nursing home when she was 15. She remembers being embarrassed and mean to her mother especially when her friends said “she was nuts”. She also remembers seeing her at the nursing home with her mother’s muscles atrophied and overall looking like an “empty shell”.  

    The podcast ends with Kelly finding out her test results with her niece, Kayla, Kathy’s daughter. Kayla is 21 years old and has tested positive for Huntington’s. Kelly does eventually discover that she did not inherit the gene and it’s an emotional moment for both of them. Although happy for Kelly, Kayla leaves the room crying because she knows she is now alone in this Diagnosis.

    This podcast not only furthered my understanding Huntington’s disease, but also really drew me into the emotions of being a teenager with a mother with the disease and also the process of getting tested as an adult. It also really impacted me hearing Kelly’s niece and her reaction when Kelly found out she did not inherit the gene. Overall, this story drew me into how devastating this disease is to all family members involved and the complexities of hearing your results.



It Says So Right Here [Advertisement]. (2013, October 25). Retrieved April 18, 2018, from https://www.thisamericanlife.org/509/it-says-so-right-here
It Says So Right Here [Advertisement]. (2013, October 25). Retrieved April 18, 2018, from https://www.thisamericanlife.org/509/it-says-so-right-here
It Says So Right Here [Advertisement]. (2013, October 25). Retrieved April 18, 2018, from https://www.thisamericanlife.org/509/it-says-so-right-here
It Says So Right Here [Advertisement]. (2013, October 25). Retrieved April 18, 2018, from https://www.thisamericanlife.org/509/it-says-so-right-here
It Says So Right Here [Advertisement]. (2013, October 25). Retrieved April 18, 2018, from                          https://www.thisamericanlife.org/509/it-says-so-right-here

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