For our date night yesterday Kay and I went to the new movie The Theory of Everything, a docudrama about the life of Stephen Hawkins. The movie was really quite good, a fine tale of a brilliant physicist who despite being diagnosed with what in the movie is described as “motor-neuron disease” as well as “Lou Gehrig’s Disease” or ALS (amyotrophic lateral sclerosis). Although I found the movie enjoyable I left feeling uneasy because it seemed like the film implied that Mr. Hawkins has survived an extraordinary 50+ years with the diagnosis due largely to his extraordinarily strong will to live and the loving care of his wife. It bothers me that some viewers may walk away from the movie blaming themselves, ALS patients or their caretakers when their outcome is not like Stephen Hawkin’s case.
While I do believe that a strong will to live and loving and supportive care can make a difference in the life expectancy of individual patients, the film seems to suggest that somehow Mr. Hawkins long survival is primarily due to factors in the control of himself and his caretakers. Nowhere in the film was it emphasized that Mr. Hawkin’s remarkably long survival is largely due to a singularly slow and relatively benign progression of the motor neuron degeneration in his case. For a detailed discussion of the variants of ALS and commentary by noted neurologist and the ALS Center Director at the University of Pennsylvania Dr. Leo McClusky about Mr. Hawkin’s case see this 2012 Scientific American article.
Here is an excerpt from this interview:
“How much do you think Stephen Hawking’s longevity has been due to the excellent care that he has received versus the biology of his particular form of ALS?
It’s probably a little bit of both. I just know him from television, so I don’t know what kind of interventions he’s had. If he really isn’t on a ventilator, then it’s his biology—it’s the biology of his form of the neurodegenerative disease that determines how long he will live. For trouble swallowing you can elect to have a feeding tube placed, which basically takes malnutrition and dehydration off the table. But mostly it’s about the biology of the disease.”
In a typical case of Amyotrophic Lateral Sclerosis the progression of the loss of nerve function to muscles progresses steadily and inexorably resulting in a loss of the ability to swallow and breath. The ability to breath without mechanical ventilation is dependent on muscles almost always affected in ALS patients. Even with tube feeding, mechanical ventilation and the best available life support systems death ensues in most patients over a course of at most several years.
I am bothered that after watching this movie some viewers may mistakenly feel that those who succumb to the usual course of ALS are simply not as determined as Mr. Hawkins or that if they somehow were able to provide the type of love and care that his wife provided that the disease progression could be slowed or stopped.
I’d love to hear what readers who also saw the move think of this commentary, and whether I’m being overly critical of the movie. Please leave a comment to start a discussion.