Neuro Note #5: Amyotrophic Lateral Sclerosis (ALS)

 

Amyotrophic Lateral Sclerosis (ALS), or "Lou Gehrig's disease", is a neurodegenerative disease effecting the neurons within the central nervous system. Ultimately, the death of these neurons causes the individual to no longer control muscle movements, in turn, causing muscle atrophy or wasting away. If you know someone with this disease, you know that it is ruthless in the way it effects someone's life, and if you do not know the havoc this disease can cause- you came to the right place. 

    Rachel Lynn Doboga is the highlight of this story, a former English teacher, whom at the age of just 28 years old was diagnosed with ALS. The average age of onset for ALS is typically between the ages of 40-70, so as you could imagine Rachel's doctor's first instinct was that her progressive muscle weakness would more than likely not be due to ALS. She described her journey to find her diagnosis as a longer than expected process. Initially Rachel began to lose the ability to control her lower extremities, next, her upper extremities, and now, her speech is declining. Rachel states however, "I don’t believe that this is how my story ends", instead of focusing on what ALS has taken from her, she is focused on surviving long enough to see a cure, and spreading what she has learned to others who's lives are being impacted due to ALS. 

    Rachel's determination to paint the true picture of ALS is highlighted in the blog title listed above, called "How I Live Now: Life With ALS". As an occupational therapy student this resource has given me so much insight to not only learn more of what ALS is, but also how the voice of the medical team impacts the individuals facing a diagnosis like ALS. Rachel speaks of a memory she had at a clinic working with an occupational therapist named Deb. Deb knew that when Rachel said "I'm fine", what she really meant was she was tired and frustrated, simply saying she was fine to attempt to make things easier. Instead of Deb leaving the room she stopped Rachel in her tracks, telling her to advocate for herself and her needs, if she was concerned about how she was going to button her pants or use a fork to eat, she needed to voice that. This encounter is the reason why Rachel is fighting this battle so courageously. 

    I chose to speak on this specific story so you as a reader can have an experience like I did hearing it. Even if you aren't an OT or an aspiring OT like me, I hope that you can learn from this story how advocating for other's needs can be so vital. Rachel is not only focused on bettering her quality of life but also spreading awareness about ALS on the blog cited below! 

The diagnosis. How I Live Now: Life With ALS. (2016, May 25). https://howilivewithals.com/2016/05/21/the-diagnosis/.