NeuroNote #2: ALS

For this NeuroNote I decided to learn more about ALS, or amyotrophic lateral sclerosis. It is also commonly known as Lou Gehrig’s Disease. I knew a little about this disease from when the ALS ice bucket challenge circled the world in 2014, but I really wanted to learn more about it and how it affects not only the person with this diagnosis, but also their families. I decided to watch “Alex’s ALS Journey”. Before I watched the video, I wanted to look up some more facts about ALS and went to the ALS Association website to learn more.

ALS is a progressive neurogenerative disease that affects the nerve cells of the Central Nervous System, the brain and spinal cord. Because motor neurons travel from the brain all the way to muscles in your body, ALS eventually causes the inability to control muscle movement. Many people with this diagnosis will lose the ability to talk, eat, move, walk and breathe. There are actually two types of ALS. The first is sporadic ALS which is the most common and is about 90%-95% of all ALS cases. This type can affect anyone. Familial is the second type and it only accounts for 5%-10% of cases and this type is inherited. There are about 5,000 people diagnosed with ALS every year, the life expectancy is 2-5 years, and unfortunately, there is no cure.


The video, “Alex’s ALS Journey”, was made by Marissa Coriell, Alex’s wife. Alex was diagnosed in January of 2013 at the age of 29 and by September 2013, he had lost the ability to eat with his mouth. For 2 years he was fed with a tube. His arms and hands started to get weaker and weaker and 10 months after the diagnosis, walking became more difficult. He started using a cane, and then a wheelchair. Alex did the ALS ice bucket challenge in 2014, with a speaking device speaking for him. He tried to stay as independent as possible and started writing a blog to help others with ALS. When he could no longer use his hands, he refused to give up and started to use his nose and head. He continued to watch football and play with his 3 boys as much as he could. He would spin them around in his wheelchair or play hungry hungry hippos with his foot. He tried to never stop moving his body, with his wife helping him the whole way, no matter how hard it was for him. He eventually couldn’t use his nose/head to type anymore and he got a device that could talk for him. This device he was able to look at words on a screen and blink to select words he wanted to say. He even started painting with a strap on his head that held the brushes for him! Alex passed away November 10, 2015, almost 3 years after his diagnosis.

After watching this video, I cannot imagine what people have to go through with this diagnosis. Their mind is still there, and they understand everything, but they cannot move, eat or talk. What I was most amazed about from this video was all of the adaptive devices Alex had to stay as independent as he could. He was able to motorize a wheelchair, which he even used to carry his kids around. He had a device that he could blink to select words and the computer could talk for him. He was able to paint with straps attached to his head holding the paint brush. It is amazing to me how creative people can be to help others keep their independence. I definitely recommend you watch “Alex’s ALS Journey”, I will link it at the bottom of this post. It was incredible to watch Alex keep his faith, keep preaching the word of God and stay moving for as long as this disease would let him.


Coriell, M. [Unbroken Life]. (2016, May 9). Alex’s ALS Journey. Youtube.                                           https://www.youtube.com/watch?time_continue=13&v=iF8D5KVWKIM&feature=emb_title

What is ALS? (n.d.). Retrieved July 24, 2020. https://www.als.org/understanding-als/what-is-als


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