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Alec Killoran - Text Encoding

Page history last edited by Alec Killoran 5 years, 2 months ago


A Day in the Life of an ALS Patient



(My mother, sister, and myself, from left)



My mother was diagnosed with Amyotrophic Lateral Sclerosis (ALS) in March 2012. A neurodegenerative disease, ALS has no known treatment or cure, and it eventually renders each patient paralyzed. A few notable figures have had ALS, perhaps most famously Lou Gehrig, the New York Yankees baseball player for whom the disease was nicknamed. Currently the most notable ALS patient is the genius Stephen Hawking, who was recently depicted in an Oscar-nominated biopic called "The Theory of Everything".


Here is a link regarding more scientific specifics of ALS: http://www.alsa.org/about-als/what-is-als.html


It is important to note that in the advanced stages of ALS, patients like Hawking and my mother cannot move or speak, but their cognitive ability is in no way impaired. "The Theory of Everything" in some ways romanticized the suffering of ALS. ALS is a very real disease in a very real world, and like most real things, its nitty gritty details get lost in translation between reality and artistic portrayals. To set a few things straight, here are some of the most common problems faced by real world ALS families on a day to day basis:


  • Financial burden: ALS is not covered on many health insurance plans, and caregiving costs can rise into the hundreds of thousands of dollars per year.  Most families dealing with ALS cannot afford to prolong the life of their loved one due to financial difficulties.
  • Communication: As ALS progresses, communication between the patient and their caregivers becomes increasingly difficult.  An ALS patient must learn to economize the use of language in order to effectively communicate their needs. 
  • Property maintenance: ALS patients need constant care, which often leads to the neglect of basic household chores and maintenance.  This can present problems down the road when the risk of pneumonia becomes more prevalent.
  • Hygiene: It is a long and arduous process to keep another person clean.  Facilitating the acts of eating, drinking, showering, and bathroom activities of another person is an extremely time consuming task.  It is, however, very necessary due to the enormous consequences of mishandling the patient's hygiene.



For context, consider this basic schedule of my mother's average Wednesday:


8AM  9AM  10AM  11AM  12PM  1PM  2PM  3PM 
Wake up, get out of bed and shower  Continue showering Get into wheelchair Eat breakfast, take morning pills Free Free Afternoon bathroom break  Afternoon bathroom break 
4PM  5PM  6PM  7PM  8PM  9PM  10PM  11PM 
Eat lunch, take afternoon pills  Free  Free  Eat dinner, take evening pills  Evening bathroom break  Evening bathroom break  Get out of wheelchair and into bed  Get out of wheelchair and into bed.  Sleep 


As can be plainly seen, even with a completely open schedule and nothing to do, there are very few hours in the day with which to do anything as an ALS patient.  The time allotted for these activities are not exaggerations.  Indeed, this rudimentary schedule neglects to mention the small nagging needs throughout the day that we able bodied people tend to without a second thought.  When we have an itch, we scratch it.  Not so for an ALS patient.  When we need to adjust our sitting position so that our back may be comfortable, we move our bodies just a little bit to one side or the other.  Not so for an ALS patient.


This is not to advance a sob story or garner sympathy.  Quite the opposite.  Families dealing with ALS do not spend their time waxing eloquent about the meaning of lost agency or cosmically cruel ironies.  There is no time for tears, and no use for them.  Movies like "The Theory of Everything" are great for spreading awareness for diseases like ALS, but they do not bring audiences a faithful representation of it.  Hollywood's penchant for romance enhances both the inspiring and melancholy aspects of suffering beyond reality.  So, when considering the unfortunate circumstances that you may find yourself or another in, seek wisdom not in Hollywood, but in the mundane.  That's where the real stuff is.

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