Neuro Note #3- ALS
For this neuro note I watched two videos about two different people with ALS. The first video I watched was a video titled Alex Coriell's Journey with ALS. It was a compilation of videos taken by Alex's wife that documented the progression of ALS in the two years from his time of diagnosis to his death. The second video I watched was a Tedx Talk titled END ALS given by Hiro Fujita, who is diagnosed with ALS, and one of his friends. This Tedx Talk focused more on how to have purpose in life once given a diagnosis. I chose the first video because I wanted to see what ALS actually looks like in real life. I have learned about what causes ALS, but as a future OT who's purpose with a client with ALS would be to help them have occupational performance, I wanted to see what struggles a client with ALS might actually face. I know that not every client has the same experience when it comes to neurodegenerative diseases, this is why I chose to add a second video.
In Alex's journey with ALS, his functioning declined very rapidly. In just two years he went from being a healthy young male with a wife and kids, to a man in a power wheelchair who needed help with all tasks. About a year in to his diagnosis he started a blog to write about his experiences and try to help others with an ALS diagnosis. However, he began to lose function in his hands and could no longer type. He transitioned to using a keyboard in front of his face to allow his to type with his nose and eventually to a communication device that would type by following his eyes as he looked at different letters. To think that this progression happened in just a year is a valuable lesson to OT's who may be working with someone with ALS. Adaption is key here. It is important to note that ALS does not effect the mind and is described as being trapped in your mind while watching your body deteriorate before your eyes. This is why it is important to adapt to the changing body to fit the occupational needs of the client at every stage, so that they may keep their passions and purpose in life. This relates in to what Hiro said in his Tedx Talk. Hiro was a fun guy before diagnosis, always going out with friends, traveling the world, and working in advertising. He too watched his body deteriorate and even lost the ability to breath on his own. He was given the decision to recieve equipment like a wheelchair and breathing devices to survive 3-5 more years, or not accept and begin to say his goodbyes to his friends, family, and life. Hiro chose to live because he felt he was given an opportunity to help make a difference in the world. He still works and is a leader in his advertising job while also working to promote finding a cure for ALS by working with END ALS. Both of these videos go to show that physical limitations don't mean an end to the capabilities.
In Alex's journey with ALS, his functioning declined very rapidly. In just two years he went from being a healthy young male with a wife and kids, to a man in a power wheelchair who needed help with all tasks. About a year in to his diagnosis he started a blog to write about his experiences and try to help others with an ALS diagnosis. However, he began to lose function in his hands and could no longer type. He transitioned to using a keyboard in front of his face to allow his to type with his nose and eventually to a communication device that would type by following his eyes as he looked at different letters. To think that this progression happened in just a year is a valuable lesson to OT's who may be working with someone with ALS. Adaption is key here. It is important to note that ALS does not effect the mind and is described as being trapped in your mind while watching your body deteriorate before your eyes. This is why it is important to adapt to the changing body to fit the occupational needs of the client at every stage, so that they may keep their passions and purpose in life. This relates in to what Hiro said in his Tedx Talk. Hiro was a fun guy before diagnosis, always going out with friends, traveling the world, and working in advertising. He too watched his body deteriorate and even lost the ability to breath on his own. He was given the decision to recieve equipment like a wheelchair and breathing devices to survive 3-5 more years, or not accept and begin to say his goodbyes to his friends, family, and life. Hiro chose to live because he felt he was given an opportunity to help make a difference in the world. He still works and is a leader in his advertising job while also working to promote finding a cure for ALS by working with END ALS. Both of these videos go to show that physical limitations don't mean an end to the capabilities.
Henderson, W. (2018, February 3). Alex Coriell’s Journey With ALS. ALS News Today. https://alsnewstoday.com/2018/02/01/alex-coriells-journey-with-als/?utm_source=ALS+News&utm_campaign=856209f0b7-RSS_FRIDAY_EMAIL_CAMPAIGN&utm_medium=email&utm_term=0_0593028b75-856209f0b7-71721017
TEDx Talks. (2014, June 7). END ALS: Hiro Fujita at TEDxTokyo 2014. YouTube. https://www.youtube.com/watch?time_continue=30&v=FIBmKX4UnaE
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