I watched the documentary "My Beautiful Broken Brain" which is about a 34 year old woman named Lotje Sodderland and her journey of recovery following a hemorrhagic stroke, which was later found to be due to a pre-birth abnormality in her blood vessels. This documentary follows her journey returning home from the hospital, to going to an inpatient rehabilitation facility for people who have suffered a stroke, and even trying a new experimental treatment (which may have been the cause of a seizure that she later experienced). The beginning of this documentary was heart breaking as she showed her everyday struggles with communicating. The hardest part was to see her frustration with herself, knowing that these were things she should know how to do and knowing that she used to be able to. At about 7 months since the stroke, her language was noticeably better and she seemed to be a little happier with herself. She then heard about an experimental non-invasive brain stimulation study which gave her hope for more improvement in her language comprehension. Unfortunately, either from the experiment or from her increased risk following her stroke, Lotje had a seizure which caused a regression in her progress. Seeing both her and her family's experience throughout the whole recovery progress shows just how important it is to have that support system backing someone in the recovery process.
I have always found documentaries like this are so important because they remind us that the clients and patients we deal with are real people and so are their family members. I also think it is nice to see the reactions in "real-time" since the footage was taken throughout her recovery. I think her story is also very inspirational, because despite her roadblocks along the way, and her frustrations, she shows that after a brain injury like this not everyone will be able to get back to their "old self" but they can still have goals and strive to be successful in other ways in their new life. At one point in the documentary she talks about her new outlook on her life and how she has different goals in life now but that doesn't mean she has failed. I think this is important for all OT's to remember as well as any person dealing with a neurological or physical condition, sometimes one will have to change things about his or her old life, but it does not have to be a bad thing. In my neurological course we have been learning about CVAs (aka strokes) and to see the deficits that commonly follow a stroke through a documentary like this really helps to put into perspective how serious and devastating these effects can be. I definitely think that others should watch this film to see how Lotje and her family/ friends helped her overcome so much in a single year following her stroke. Overall I loved Lotje's positivity and courage throughout this whole film and I think there is a lot to learn from her perseverance.
Sunday, July 26, 2020
Thursday, July 16, 2020
Neuro Note #1: "The Innerkid Philosophy", Huntington's Disease
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.
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