The Silence of ALS

Recently I was told that ALS patients didn't have pain. It was particularly tough to hear this because it came from a family member of an ALS patient - the very person responsible for authorizing comfort measures to be implemented. Such a misguided statement stems from two misconceptions. The first is that when the disease process appears "silent," when patients cannot openly state their pain, then they don't have any. And the second, related to the first, is that the interpretation of dying is debatable. Without deep education as to what is going on, most people misinterpret the truth in front of their eyes to think that there is debate in dying.

Every disease state has its pain, and ALS is no different. Certain forms of pain I've seen in ALS patients are the pain of progressive immobility where it hurts to move or be moved; the pain of muscle dysfunction from cramping to spasms; the pain of skin breakdown and pressure wounds; the pain of the result of a dysfunctional gut or a dysfunctional urinary system, such as feeding intolerance or obstipation or retention; and the pain - yes, pain - of working to breathe. Imagine contending with any one of these on a daily basis, untreated, and see how you'd think you'd feel. Just putting yourself in the shoes of a voiceless ALS patient is all it really takes to realize that dying hurts.

This is why it is crucial to correct the fallacies of current thinking about dying. Dying from disease is not a nebulous process up for debate because of our denial. It is - notwithstanding its mystery and complexity - a distinct, recognizable clinical entity. The precursor phase to active dying is a phase of bodily breakdown, rife with symptoms from that breakdown. Active transitioning can have aspects of difficulty, but often it presents itself as a final relief from the burdens of the process which engendered it. It is important to not misinterpret what is occurring in dying, but to accurately diagnose it. It is important to understand that breakdown is synonym for pain. Really, refutation of the symptoms of dying, in ALS or any other painful disease state, is just another form of denial of death itself.


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