Neuro Note #3: Alex's Journey


     “Alex’s Journey with ALS” is a tribute video by  Marissa Coriell  to her husband, Alex,  who was diagnosed with Amyotrophic Lateral Sclerosis in 2013 and passed just two short years later. It was clear throughout the video that his “clinical carrot” or motivation was his faith. He knew this wasn’t the end for him and his belief that he would be healed was what motivated him to continue to be joyful and live life with purpose despite his devastating disease. 

    At the beginning of the video, Marissa documents his first symptoms which were difficulty with walking, speaking, and completing self-care tasks such as shaving. As the disease progresses, Alex is confined to a wheel chair, loses muscle tone and strength in his arms, and begins receiving nutrition through a feeding tube.

    Marissa also filmed Alex engaging in several occupations that he found meaningful since the onset of ALS.  Blogging was one of these activities and Alex spent time writing about his disease, as well as, seeking to encourage others who were also struggling with ALS. When he first began blogging, he was able to use his fingers to type. Eventually he began complaining of pain in his hands and switched to using his nose. When he lost the ability to use his nose, he began using an eye gazing device where he was able to communicate just by looking at the desired letters and words. It was impacting to me to see assistive technology used throughout the progression of his disease to help him continue to participate in activities that were fulfilling to him.

    Even though Marissa created this video as a tribute to Alex, I was also very impacted by watching her act as a steadfast, loving caregiver. She was given the task of still raising her 3 little boys and also caring for Alex. She met so many of his basic needs with patience, humor, and love. It was insightful to me how much she had to take on as his caregiver and I know the video only gave me a limited view.

    One reason I chose this video is because I have known of several fathers who died from ALS while still raising children in their home. This video really expanded my perspective of what the progression of this disease looks like and how it impacts caregivers, children, family members, and friends.  I’m thankful to see first-hand how a motivating clinical carrot, relevant adaptive equipment, and a committed caregiver helped Alex live his last days to the fullest. 
Henderson, W. (2018, February 03). Retrieved May 21, 2018, from https://alsnewstoday.com/2018/02/01/alex-coriells-journey-with-als/?utm_source=ALS News&utm_campaign=856209f0b7-RSS_FRIDAY_EMAIL_CAMPAIGN&utm_medium=email&utm_term=0_0593028b75-856209f0b7-71721017

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