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

Ketchup Bottle -> Watering Can?

The biggest thing I took from this assignment was that therapy tools do not need to be expensive. I remember during my observation hours, I heard a lot of therapists complain about how expensive the materials they used were. I think it is just easier to order exactly what you need instead of looking at something simple and trying to adapt it to be what you need. When I first was assigned with a ketchup bottle, I was so confused as to how I could use it for anything other than something to fill up and squeeze a material out of. When I was brainstorming ideas, I came up with many other options, such as turning it into a birdhouse. I think that in America, we are so fortunate to have so many resources available to us that we forget to stop and try to fix the problem given the resources we already have instead of just going out and buying the solution.

I believe this project really allowed my creativity to resurface. In my undergraduate studies, every assignment or project was pretty straight forward, but with this assignment I had to turn one object into another. This was a task that I had never done before and it made me wish I had a child’s creativity again. I had not really needed to be very creative up until now, so it was really cool to use those neural pathways again. I feel like I was using a part of my brain that I had not used in a long time, but I feel like it was something that I will need to keep using, so I was really happy and proud of my finished project. It was really cool to see an intervention that I came up with by myself that I believe would be extremely useful for my “client” now or future clients with similar symptoms.

After completing this assignment, I believe I will be more likely to collaborate with others when I have a problem. My roommates really helped me when I could not figure out what I wanted to do, or how to grade this activity up and down. One of my best friends was also having a really hard time coming up with an activity for this assignment, so five of us really brainstormed for her and tried to figure out the best device for her to make. I think it made me realize that everyone is really willing to help, and a group brainstorm session is better than a singular one because we bounced ideas off each other and decided why one idea would work or why it would not. Eventually we could combine ideas and figure out the best option for her.

Rollin with the Grizzlies

Last night, I had the privilege of attending a Memphis Rollin’ Grizzlies practice. During the hour and a half practice, we got to watch a scrimmage between the team of men in wheelchairs. After the practice was over, the players were very happy to let us try out their basketball chairs. The entire time we watched the practice, my friends and I were so impressed by how physical the sport really is. When people think about wheelchair sports, I am sure no one thinks about crashing into each other so hard that someone falls over. It was very interesting to see the athleticism that each man possessed. Wheelchair basketball is no easy feat, speaking from experience. The upper body strength that each man has is enough to get rid of the thought that people in wheelchairs are weak and need to be watched over and take care of.

After observing the practice, I think even my idea of the capabilities of people in wheelchairs was changed. I knew that they were capable of much more than what probably the majority of the public thinks, but I was so impressed by their athleticism and strength. After observing this practice, I feel like I can and will be a much better practitioner one day. I feel like now that I know about opportunities like this, I will be able to recommend resources like this and I will have a much better understanding of the level of independence that is possible for people with a double amputation or a spinal cord injury.