I'm reading "Reaching Down the Rabbit Hole: A Renowned Neurologist Explains the Mystery and Drama of Brain Disease" by Allan H. Ropper, Brian David Burrell and wanted to share this quote with you.
"Although my evidence is entirely anecdotal, I have become convinced of two things: (1) physicians complain disproportionately of this symptom and are hard to persuade that it is benign; and (2) only the nicest people get ALS (thus immunizing a substantial number of physicians)."
"Anyone diagnosed with ALS has a series of gut-wrenching decisions to make. After the shock has worn off, once the capacity for rational thought returns, many small choices and a few large ones come along in relatively rapid succession. When will I need a wheelchair? Will I accept a feeding tube? Will I go on a ventilator machine?"
"The disease is most certainly fatal if left to run its course. Yet it leaves the brain and the sensory system intact. The patient can feel everything and move almost nothing, eventually coming an eyelash away from being completely locked in. The ultimate question facing the ALS patient is whether to be or not to be. Quite simply, will I do whatever it takes to stay alive, in whatever condition, or will I let the disease take over? In practice, the question is much more direct: Are you willing to have a tracheostomy tube inserted and be placed on a ventilator? If so, you will no longer be able to talk, but you will be able to breathe"
I have one patient, diagnosed in her early 40's with it and it's heartbreaking to watch. Again without approving, I can understand people choosing euthanasia over the suffering.
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