Neuro Note #2

Huntington's Disease Film:     

      The material I chose was a short film titled Her Mother’s Daughter. This film followed the O’Donnell family and their experiences with Huntington’s Disease. In the film we see how Huntington’s is affecting the family. Kathi O’Donnell has two children diagnosed with Huntington’s, her daughter and son. Kathi is the care-giver of both her daughter and her grand-daughter. In the film, we learn more about Kathi’s daughter, Meghan. Meghan was diagnosed with Huntington’s Disease when she was only 20 years. When she was diagnosed, she was pregnant with her daughter, Alyson. Meghan and Kathi had Alyson tested before she was born, and it was determined that Alyson would also develop Huntington’s Disease. Throughout the film, we learn many things about Kathi’s family. As far as HD goes, we know that the more CAG repeats, the faster the progression of the disease. Kathi’s son had 51 CAG repeats, Meghan had 68 CAG repeats, and Alyson has 80 CAG repeats. Throughout the film, we see Meghan a couple of times. It shows Meghan is in a nursing home and is fully reliant on the workers to take care of her. Kathi explains that Meghan is cognitively all there, but her body has given up on her. She is in a wheelchair and cannot speak. Meghan was tested for Huntington’s because she started noticing changes in her gait. Since being diagnosed, Meghan’s HD progressed quickly. We also see a focus on Alyson throughout the film. Alyson has Juvenile Huntington’s Disease. She developed symptoms for Huntington’s at the age of 9 and is now 11. We learn from Kathi that Alyson has an incredibly hard time making friends. Alyson attends a medical facility with a school included to make it easier on her. Overall, the film gives a good insight into Huntington’s Disease and not only what it does to the person, but also the caregiver.

         

      I chose to watch a documentary on Huntington’s Disease because I realized that it was one of the topics in class that I had known the least about. I wanted a chance to see Huntington’s Disease and how it affects a family. By watching the film, I aimed to learn more about the disease. I also wanted to compare and apply it to what I have already learned in class. 

      Even after our class on Huntington’s Disease, I still had a hard time picturing what all the symptoms and stages would look like. The film allowed me to primarily learn about the middle and late stages of Huntington’s Disease. Meghan being in the late stage and Alyson being in the middle stage. I was able to look at our study chart on Huntington’s Disease and pull things out that Meghan and Alyson displayed that placed them in those particular stages. In class, we learned that in the late stage, that the person will generally require help in all aspects. We also saw that they would often be in a nursing home. I was able to place Meghan into this stage based on what I saw in the film. In class we learned that the middle stage involved eating, speech, and walking difficulties. Alyson was hard to understand. We also saw that she had difficulty walking and wore a leg brace. By watching this film, I learned a lot about what falls into each of the stages. It is important as an Occupational therapist to know what stage each individual is in so that you can provide the best intervention approaches possible. I also learned a lot about the symptoms of Huntington’s Disease. I saw a lot of motor symptoms including the loss of coordination. I learned what adaptive equipment is often used including leg braces, wheelchairs, and 4-wheeled walkers. I also learned about involuntary movement and noticed Alyson’s arms would go up in the air quite a bit. I learned about the psychiatric aspects of the disease, especially agitation and depression. I saw both of these with Alyson throughout the film. One of the most important things I learned from watching the film was the caregiver’s role. Kathi O’Donnell was an amazing caregiver, who made sure that Meghan and Alyson’s quality of life was maintained as much as possible. Alyson was able to go to conventions about Huntington’s Disease, where she could meet new friends, participate in talent shows, and other events. Even though Meghan was in a nursing home, Kathi still made sure to read cards out loud to her, talk to her, and entertain her. I enjoyed learning more about Huntington’s Disease by watching this sweet and inspiring film. 

Her Mother's Daughter. (n.d.). Retrieved from https://hdsa.org/hmdfilm/