We're AL(S)l in this together

For my last neuro note, I decided to watch a TedTalk on ALS. Kevin Gosnell gave this talk was 46-years-old when he was diagnosed with ALS and has three sons and a wife, and that he was in the prime of his life when his symptoms started to show. He had everyone imagine that you are sitting in a room and a mosquito is flying around and lays on your ear, but you are incapable of swatting it away or even telling someone that it is there, so you just have to suffer while it is sucking your blood. Gosnell realized that ALS research was very non-cohesive and has set out to fix that by setting up a team of ALS doctors to work together and a nonprofit that is devoted to fundraising for the research.

After watching this video, I think I have a better understanding of what happens behind the scenes of an ALS diagnosis. Gosnell said that with his diagnosis, he eventually will be unable to complete his ADLs, he had to quit his job, but the diagnosis brings about many other bills and devices to buy. He explained that just by quitting his job, his family was put into financial distress, but then when he needed to buy a scooter or wheelchair or any other adaptive device, the distress increased substantially. I think I knew that both were consequences of the diagnosis, but I never really put them together, and the more the disease progresses, the more equipment is needed. ALS is such a heartbreaking diagnosis for the individual and family, and it is sad that during the limited time they have with their loved one, the family also needs to be worried about the finances.

After watching this video, I have such a greater appreciation for St. Jude. Not only do they take the financial troubles away from their families, but they also share the breakthroughs in research with other facilities. That was one problem addressed in this TedTalk. Gosnell stated that many ALS doctors do not share their successes with each other and they definitely do not share their failures, so there is a lot of overlap in trials because they did not come together to try to beat the disease. Gosnell wrapped up his talk by addressing his three sons. He said that what he wanted his last lesson to be to them was that “if you stand alone you get stuck, if you come together you can go far.” I think that is something for everyone to take from this talk, a group of people can accomplish so much more than just one individual, so we need to grow with each other and help each other in every aspect we can. Together, we can go far.

Gosnell, Kevin. (2015, November 25). ALS hasn't won - ALS ONE! | Kevin Gosnell | TEDxBeaconStreet. Retrieved from https://www.youtube.com/watch?v=OvCUhA2KuAY