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Neuro Note 5: Huntington's Disease

In this TedTalk, Kristen Powers talks about her personal experience with Huntington's Disease, and how it has shaped her outlook on life and how she chooses to pursue living it to the fullest. 

(Click here to watch) https://www.youtube.com/watch?v=l6JiBiMqiI4

Kristen speaks about her mom's experience with Huntington's, and gives the analogy of if someone was to combine Parkinson's Disease, Dementia, Alzheimer's, ALS, and Bipolar Disorder, you would get some kind of variation of HD. Huntington's Disease is a genetic and progressive neurological disease that results in the inability to walk and communicate. To learn more facts about HD, click the link below:

https://www.yourgenome.org/facts/what-is-huntingtons-disease

I think it is important to not only acknowledge the stress and burden the individual diagnosed with Huntington's Disease faces, but also the caregiver's future responsibilities and emotions as well. Kristen touches on a very sensitive subject by asking the question "what husband would want to take care of someone that was going to progressively get worse?". This is where I believe Occupational Therapy can play such a vital role, truly embodying our holistic approach. A few ways I can see OT playing a role in HD is by caregiver and client education, mental health support, end of life support, and planning use of adaptive equipment and home modifications. 

Huntington's Disease is a genetic disorder which results in a 50% chance of the gene being passed along to the children. In addition, since HD is usually diagnosed between the ages of 30 to 50 years old, many people live with the gene for years without even knowing. With that being said, genetic testing can actually be performed in order to determine whether or not an individual has said gene. Although controversial, genetic testing can prove to be positive for some. In Kristen's case, she speaks about her upcoming genetic testing and why she chose to go that particular route. Kristen's ultimate goal is to provide advocacy for Huntington's Disease, and plans on documenting her experience with receiving the genetic testing and results. I believe this will prove to be such a powerful tool in educating individuals about the disease, as well as the process and ultimate toll it can place on one's entire family.

The InnerKid Philosophy is brought up by Kirsten to explain how a child or young adult responds to situations when a challenge is put in their path. I think this overall idea is put in place to reiterate the importance of how we have the choice to choose the way we want to live our life, and there is such power in that choice. 

Overall, Kristen emphasizes the realization that none of us are going to live forever, and how we choose to deal with that realization plays such a huge impact on our life and what we do with it. 

Making the most out of the life you have is what Occupational Therapy strives to accomplish. 



Resources

The Inner Philosophy [Video file]. (2012, April 13). Retrieved August 29, 2020, from https://www.youtube.com/watch?v=l6JiBiMqiI4

What is Huntington's disease? (2015, June 19). Retrieved August 29, 2020, from                              https://www.yourgenome.org/facts/what-is-huntingtons-disease 







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