Neuro Note #4: ALS

 Amyotrophic lateral sclerosis (ALS) is one of those terrible diseases that we still do not have a cure for. ALS is a condition that affects the nervous system in the brain that causes loss of muscle control. I read a blog post called "One Year" by a man named Ray. He gave a personal perspective of how ALS affects ones life. He had a whole blog about his journey of living with ALS, but his blog post tells about his first year living with ALS. He talks about the process of telling everyone close to him that he had ALS. He said it was the hardest thing he had to do and that it was draining. He felt that way because he didn't know what to say and the people he told didn't know what to say either. I can only imagine being diagnosed with an incurable disease and having to tell everyone I know that I was dying and there is nothing that can be done about it. It is hard to process the thought of dying yourself, but knowing that you are telling people awful news cannot be easy at all. With this disease, there is no specific time line of how fast the muscles will start loosing their function. Ray thought that in a year he would still be pretty much the same as he was when he was diagnosed. He found that it wouldn't be true. He was getting tired very easily. He had trouble eating independently, and it took him a long time to finish each meal. I feel as he felt that he was a bother to those around him because he stated that people usually were cleaning dishes around him and he felt bad that he couldn't help. He also stated that it took him a while to get dressed with help and it was even harder to do it by himself. He had to have a whole new wardrobe since being diagnosed with ALS so that it would be easier for him to get dressed by himself. Reading through his experience should make anyone feel blessed that they can do simple things as dressing themselves independently and to not take anything for granted because it can be gone so soon. I wanted to read this blog post to see what life was like at the initial start for someone who has been diagnosed with ALS. This is the perfect blog to read for someone to get the perspective on the person diagnosed. We can read all about the diagnoses and symptoms of ALS, but knowing how a person diagnosed with it lives helps me understand the disease better. I learned that the best thing you can do for a person diagnosed with this disease is to be there for them and help them learn how to adapt to the new living situation. It is important that they know all the effect of the disease and how to properly prepare their current living environment. It is important for them to know that there is no specific time line for when the muscles will lose function. It is also important for them to have a support system. They will need someone to help them function independently in their daily life. I strongly recommend reading the whole blog by Ray. It give a great perspective on how he found joy through this trial in his life and what to expect of someone who is diagnosed with ALS. 

Photo & Blog from: 

Rays Little Ride. (2016, May 24). One Year. Retrieved from https://rayslittleride.com/2015/12/16/one-year/