Neuro Note #2

I watched a Ted Talk called "ALS hasn't won- ALS ONE!" by Kevin Gosnell. He was diagnosed with the fatal disease, ALS, in 2015. He is a proud dad of three sons and as he states "married to his best friend". He talks about the struggles of ALS. He says as he progresses he will experience dysphagia and have to go on a feeding tube like we discussed in class. This is a decision he will make before progression with his care team. I chose this Ted Talk because it discusses research and the lack of funding for it. He talks about insurance and how they won't pay for basic household needs like a seat for the toilet or equipment for his bathroom. This is something OT's can be involved in as we are our client's advocate.  He discusses the emotional impact of knowing he won't see his children achieve all their milestones. He won't be able to see the success of his company. He will be "imprisoned" in his own body because of dysarthria. It really made me realize the impact of this disease even more and the importance of having an OT. During the remaining valuable time one has, they could have an OT make the most of it through adaptive technology and family education. He reiterates the importance and value of time. As an OT, we can help that client still have meaning and value to their lives as the disease progresses. 

He was a successful business man. He and his childhood friend created their own company called T&K Asphalt Services.  He puts great emphasis on time and how it is the most valued commodity. He strives to bring light to the need for ALS research. He gathered the best ALS doctors to a conference room in Mass General hospital in efforts to take ALS with a head on unified approach. They created a care team and plan. The focus was on working as a team. They are launching ALS One, to try to create a treatment in four years or less. They raised money through various fundraisers. They made a website and are still continuing to this day. The team came together to use their skills and valuable time to work for a cure to ALS.
He stated he knows this work will not help him, but hopefully his work will help the next family diagnosed with ALS. During his last year on earth he made a massive impact in the ALS community.

I will recommend this concise Ted Talk to anyone who wants to learn more about ALS and the research going on through ALS ONE which Kevin Gosnell founded. It was an inspiration to me.

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