The Two Kinds of Decay

Names

The first doctor known to have observed cases of my disease was Jean Landry, in 1859. He saw that his patients initially began to feel numbness and paresthesia (abnormal sensations) in their feet.

In addition to the strange sensations and numbness, the patients’ feet grew weak and then paralyzed. And the numbness and paralysis spread upward from the feet, up the legs, and then continued up the torso to the diaphragm. When the diaphragm muscles weakened to the point that the patient could no longer breathe, the patient died.

And so the first proper name of my disease was Landry’s ascending paralysis.

In 1916, two more French doctors, Georges Guillain and Jean Alexandre Barré, studied several people with ascending paralysis and observed the key diagnostic abnormality of increased spinal fluid protein but normal cell count.

And so the second proper name of my disease was Guillain-Barré syndrome.

The pathology is now understood as the immune system’s generation of antibodies targeting the peripheral nerves’ myelin, their protective and conductive protein sheath.

Landry’s paralysis came from nerves that had lost their myelin. And the protein in Guillain and Barré’s spinal fluid was made of that stripped-off myelin.

The condition may resolve spontaneously, relapse and remiss indefinitely, or progress and terminate in death.

In 1998, after my first year of graduate school, I put on my MedicAlert bracelet. It’s engraved:

TAKES PREDNISONE FOR CHRONIC IDIOPATHIC DEMYELINATING POLYRADICULONEUROPATHY

Chronic idiopathic demyelinating polyradiculoneuropathy. CIDP. That’s the shortest name for what’s wrong with me. It’s something like a chronic form of Guillain-Barré syndrome but not exactly, and there isn’t a proper name for it yet.