NeuroNote #2 - Huntington's Disease

I watched the documentary “Twitch.” This film followed a 17 year old girl, Kristin, who is at risk for Huntington’s Disease. Her mother, Nikki, died from Huntington’s Disease complications when she was 9. This documentary goes on to 4 other individuals with Huntington’s Disease to give different viewpoints of how it affects different people.

I chose to find a documentary on Huntington’s Disease because although I briefly researched it and had a lecture over it, I still had many unanswered questions. Why would someone still choose to have kids if they know they could get this disease and die? Why wouldn’t you want to know if you have it?  As the film continued, my understanding of Huntington’s Disease became much clearer.  In this documentary Kristin discusses how she wants to be tested for Huntington’s Disease because she is aware she is at risk for it, but does not like not knowing what could happen to her. She watched her mother suffer and did not want to think that could be her one day. This really showed me how knowing versus not knowing can affect every aspect of your life. You want to live life as best you can, but if you test positive, you would need to try and accomplish all of the things you would want to do as an adult because you will not be able to in the future. Everyone desires some sort of relationship. How do you tell someone that you want a future with them, but that your future may not be as long as you thought?

From another point of view, Kristin’s teacher, Jennifer, discusses her difficult situation with not being tested, but not by choice. Her grandfather died from Huntington’s Disease. However, her mother chose not to undergo genetic testing because she does not want to know her fate. As I got to this part in the film, I paused it. I started thinking about how denial is such a valuable coping mechanism in unclear situations, but in this case, your results are certain. You cannot deny them. Not having that major coping mechanism adds onto the pressure of being tested, and possibly being positive. Jennifer then discusses how she desires to be tested, but if she comes out positive, then she would also determine her mother’s fate, which her mother doesn’t want to know about. I cannot imagine being in this situation, especially being married and wanting to have children, but avoiding having children because of your uncertain future. 

As the film continued, I noticed that many of the individuals with Huntington’s Disease were terminated from their workplace due to irritability or forgetfulness. How awful it must be to try and prolong your “normal” life, only to be fired because of your symptoms that you have no control over. One man discusses how vulnerable he feels because prior to his diagnosis, he was a “tough man.” Now, his emotions are exposed to those around him and he cannot do anything but feel embarrassed. I found that Kristin’s explanation of Huntington’s Disease at this point in the film made it clear to me just how serious this condition is. She described it as a mixture of ALS, dementia, and Parkinson’s Disease wrapped into one condition. The symptoms are so broad that any variation of them is a different version of Huntington’s Disease.

As the movie neared the end, I began to understand both sides of testing to an extent. Kristin mentions that the main reason she wants to get tested is to know if she can have children one day. If she tests positive, she says that she will not have children nor will she adopt. I was astonished at her statement. Why wouldn’t you want to adopt? I respected her greatly for her decision not to have biological children to avoid putting them at risk for this disease. She then goes on to say how miserable she was while watching this disease engulf her mother’s life and she would never wish that upon anyone. I had yet to look at it from that perspective. She also mentions that she wants to be tested because the fear of being in her mother’s situation one day as “paralyzing.” Living each day, waiting on a symptom to occur, like a ticking time bomb. 

This documentary helped me understand all of the aspects of someone’s life that Huntington’s Disease can impact. It obviously impacts you physically, but also mentally and emotionally. Even if you don’t know if you have it, you worry about what could be your future or what could be your children’s future. You would strive to live a normal life by having a career, to only be let go because you cannot control your emotions or memory. You want to have children, to enjoy that aspect of your life before Huntington’s Disease takes over, but then you put your children at risk for a fatal disease. Kristin finally is tested. She is negative for Huntington’s Disease and realizes that she can fulfill all of her dreams for her future. However, her brother remains untested. How would she deal with the possible survivor's gulit if he tested positive for it? This is another heart wrenching aspect of HD. Although you have the courage to be tested and the results conclude that you are negative, your siblings could have a different outcome. You are still not able to be completely at peace knowing that you are safe, but your sibling may not be. 

I would recommend this film to anyone in OT 537, or anyone in general, who doesn’t fully understand what Huntington’s Disease is or why those at risk make the decision they do. This film opened my mind to all of the obstacles one would face by just being at risk for the disease. I appreciate that knowledge it has given me because if I encounter a client in the future with Huntington’s Disease, I can related to them slightly more because I can see the different perspectives on this disease. If anyone is interested in watching this documentary, they can access it on YouTube for $3.99 as I did. I can assure anyone who watches it will turn off the movie with an open mind.

Powers, K. (Producer), Brzeski, E. (Director). (2015). Twitch [Motion Picture]. United States:              BeeryMedia.