End ALS
For this neuro note, I watched an ALS patient give a TED Talk with the help of his friends. Hiro Fujita rode a power wheelchair on the stage and wore a shirt that said end ALS. His symptoms started with tingling in the fingers and Hiro thought he was hungover from his rambunctious life style habits. When he went to the doctor, however, he was diagnosed with ALS and as he put it, "Asked to step off the field but thanked for playing the game". As far as he could see, his life was over or at least not far from it. His hands begin to slowly loose function and he began to have multiple falling episodes. He explained one time when his legs gave out in the street but no one would help him because they assumed he was a drug addict. Eventually, when it was time to make the decision on wether or not to get the tracheotomy, Hiro decided to have the procedure done because he felt that he had not contributed to life yet. He wanted to make a difference and speak out for advocacy of the disease and treatment.
We discussed this progressive disease in great detail in class. Hiro seemed to have all of the hallmark symptoms we have learned about in the textbooks. He lost function in his muscles groups one by one, he dealt with severe fatigue and had to turn to adaptive and assistive technology to perform most of his tasks for him. He even lost the ability to breath and speak. He could only communicate through eye gaze on a special computer. However, even though his friend did most of the talking and Hiro just sat there in his chair, his message was heard loud and clear to everyone who listened and it was obvious that it was his message. He said that the weaker he gets the more he wants to help others and the more he lost his voice the louder, he felt, he got. Those words, even though they were not directly spoken, I feel like they have so much power.
This man sees the value in perseverance, attitude, determination, and he sees the will to fight in his situation. He fights for not only his self but for others. He has not let this disease slow him down. He continued to work with ALS and project his mission. He seeks out funds and research on the disease and he has labeled the movement as, "End ALS". He still says that life is great despite his condition. "Life is great 99% of the time." For that last 1%, Hiro did not have very nice words to say!
Retrieved from: https://www.youtube.com/watch?v=FIBmKX4UnaE
https://www.upworthy.com/he-has-als-he-can-no-longer-speak-and-he-needs-you-to-listen-to-him-talk-about-it
We discussed this progressive disease in great detail in class. Hiro seemed to have all of the hallmark symptoms we have learned about in the textbooks. He lost function in his muscles groups one by one, he dealt with severe fatigue and had to turn to adaptive and assistive technology to perform most of his tasks for him. He even lost the ability to breath and speak. He could only communicate through eye gaze on a special computer. However, even though his friend did most of the talking and Hiro just sat there in his chair, his message was heard loud and clear to everyone who listened and it was obvious that it was his message. He said that the weaker he gets the more he wants to help others and the more he lost his voice the louder, he felt, he got. Those words, even though they were not directly spoken, I feel like they have so much power.
This man sees the value in perseverance, attitude, determination, and he sees the will to fight in his situation. He fights for not only his self but for others. He has not let this disease slow him down. He continued to work with ALS and project his mission. He seeks out funds and research on the disease and he has labeled the movement as, "End ALS". He still says that life is great despite his condition. "Life is great 99% of the time." For that last 1%, Hiro did not have very nice words to say!
Retrieved from: https://www.youtube.com/watch?v=FIBmKX4UnaE
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