ALS Hasn't Won - Neuro Note #2
For this second Neuro Note, I chose to focus on ALS, or Amyotrophic Lateral Sclerosis. ALS is a motor neuron disease that affects nerve cells in the brain and spinal cord, resulting in loss of muscle control. I chose to focus on this topic because I wanted to learn more about this nervous system disease, particularly how the disease first presents itself, and how it can interfere with occupational performance. I decided to watch "ALS hasn't won - ALS ONE!", a Ted Talk by Kevin Gosnell.
Kevin is a husband and father to 3 sons. He first noticed the effects of ALS on a hike one morning with his son, which he said started out as a cramp in his calf and hamstring. He said that over the course of the next few weeks, he started to have weakness and twitching in many of muscles. While giving this Ted Talk, he is in a wheelchair and states that he can no longer walk and is slowly starting to feel the effects in his right arm. He goes into detail how soon he will inevitably be able to move any of his muscles and will need assistance for almost everything, from brushing his teeth and dressing to himself, to eventually even breathing.
He states how many people would immediately shut down after receiving this diagnosis and feel sorry for themselves. He chose to have a different outlook. Instead of choosing to reflect upon asking "why me?", he chose to ask "what can I do with the time that I have left, so that I can make a change for people who will receive this diagnosis in the future?". He began to research constantly and found problems in 3 different areas concerning ALS: research doctors, fundraising, and care. He found that ALS doctors spent 50% of their time trying to raise funds on their own. He also found that doctors did not share everything, specifically their failures. This results in doctors duplicating the failures of other doctors, which is a waste of time and completely slows the progress of doctors being able to find a cure for this disease. He also found that the ALS fundraising community was the most fractioned. Basically, every aspect of the ALS community represented a disconnected, inefficient, under-utilized community despite having some of the best doctors in the world researching it.
Kevin decided to make an effort to change this, and decided to have a meeting in Boston that he invited some of the best ALS researchers, doctors, and fundraisers to attend. He stated that he finally started to see a group of passionate, caring, intelligent, and creative mind work together. They created committees, planned more meetings, started a care team, and created ALS ONE, which is dedicated to making a 4 year treatment plan that best utilizes the time of the doctors and those who are diagnosed with ALS. He also started the ALS Knights, which is a community of people who have been diagnosed with ALS, who are dedicated to raising funds for research and are there to support eachother.
From this Ted Talk, I learned that receiving a diagnosis such as ALS does not define the person. A person should instead be defined by how they utilize their skills and time to help others and strive for change. Kevin demonstrated an amazing ability to bring people together for a greater cause. Instead of dwelling upon what awaited him in his future, he chose to instead try and make a better future for others. I am so incredibly inspired by Kevin and what he was able to achieve in such a short period of time. If everyone had his same mindset, we would surely see an extreme and significant amount of progress in the world. I definitely would recommend this video to anyone who is interested in ALS and is looking for some inspiration.
Gosnell, K. (November 25, 2015). ALS hasn't won - ALS ONE!. Retrieved from https://youtu.be/OvCUhA2KuAY.
Kevin is a husband and father to 3 sons. He first noticed the effects of ALS on a hike one morning with his son, which he said started out as a cramp in his calf and hamstring. He said that over the course of the next few weeks, he started to have weakness and twitching in many of muscles. While giving this Ted Talk, he is in a wheelchair and states that he can no longer walk and is slowly starting to feel the effects in his right arm. He goes into detail how soon he will inevitably be able to move any of his muscles and will need assistance for almost everything, from brushing his teeth and dressing to himself, to eventually even breathing.
He states how many people would immediately shut down after receiving this diagnosis and feel sorry for themselves. He chose to have a different outlook. Instead of choosing to reflect upon asking "why me?", he chose to ask "what can I do with the time that I have left, so that I can make a change for people who will receive this diagnosis in the future?". He began to research constantly and found problems in 3 different areas concerning ALS: research doctors, fundraising, and care. He found that ALS doctors spent 50% of their time trying to raise funds on their own. He also found that doctors did not share everything, specifically their failures. This results in doctors duplicating the failures of other doctors, which is a waste of time and completely slows the progress of doctors being able to find a cure for this disease. He also found that the ALS fundraising community was the most fractioned. Basically, every aspect of the ALS community represented a disconnected, inefficient, under-utilized community despite having some of the best doctors in the world researching it.
Kevin decided to make an effort to change this, and decided to have a meeting in Boston that he invited some of the best ALS researchers, doctors, and fundraisers to attend. He stated that he finally started to see a group of passionate, caring, intelligent, and creative mind work together. They created committees, planned more meetings, started a care team, and created ALS ONE, which is dedicated to making a 4 year treatment plan that best utilizes the time of the doctors and those who are diagnosed with ALS. He also started the ALS Knights, which is a community of people who have been diagnosed with ALS, who are dedicated to raising funds for research and are there to support eachother.
From this Ted Talk, I learned that receiving a diagnosis such as ALS does not define the person. A person should instead be defined by how they utilize their skills and time to help others and strive for change. Kevin demonstrated an amazing ability to bring people together for a greater cause. Instead of dwelling upon what awaited him in his future, he chose to instead try and make a better future for others. I am so incredibly inspired by Kevin and what he was able to achieve in such a short period of time. If everyone had his same mindset, we would surely see an extreme and significant amount of progress in the world. I definitely would recommend this video to anyone who is interested in ALS and is looking for some inspiration.
Gosnell, K. (November 25, 2015). ALS hasn't won - ALS ONE!. Retrieved from https://youtu.be/OvCUhA2KuAY.
Comments
Post a Comment