Slowness of movement and at least one other symptom – usually a tremor while at rest, muscle rigidity or a tendency to fall – separates those of us who take movement for granted from the growing tribe of “Parkies.” According to the Mayo Clinic, Parkinsonism is a collective term for a group of diseases that includes Parkinson’s disease. But this medical description typically remains hidden in plain sight on corners of Google visited only by experts and patients. Occasionally, news of a celebrity being diagnosed with the disease will prompt tweets of sympathy, but then people shrug off the news and get on with their lives.
That is until someone like Emmy, Dupont and Peabody Award-winning journalist, Jon Palfreman, comes along and lifts the veil on his own journey with the disease and the pioneers who transformed Parkinson’s sufferers from “statues awaiting death” to people living longer lives, albeit with a debilitating condition.
From James Parkinson’s seminal 1817 “Essay on the Shaking Palsy” to the scientists whose work formed the basis for the dopamine-centered theory of Parkinson’s (Carlsson, Hornykiewicz, Ehringer, and Birkmayer), Palfreman succeeds in distilling complicated concepts into readable prose that will resonate both with patients and medical professionals.
Some of my favorite stories in the book involve unexpected discoveries. For instance, there was the case of “the frozen addicts” who mistakenly used a “dirty street drug” that induced Parkinson’s symptoms. The drug, MPTP, ended up providing scientists with clues on how the disease develops. The other story involved the genetic sleuthing among Italian family members (Contursi kindred)that led to the discovery of a critical player in the disease — the neuronal protein known as alpha-synuclein.
And yet the stories, even in the gifted hands of Palfreman, are frustrating because the search for a disease-modifying therapy or a cure remains ongoing. Protecting, reviving, and replacing dopamine-producing neurons have in the last few decades faced setback after setback. While Palfreman highlights interesting approaches that hold promise, it may be years before that promise is realized for patients who suffer from the disease.
However, there is also hope. Hope lies in introducing the rest of the world to the resilient people fighting in the trenches every day to find a cure. People may be more familiar with the actor, Michael J. Fox, and his advocacy. Thanks to Palfreman, the rest of us have also now been introduced to the professional dancer, Pamela Quinn, who also suffers from the disease. The simple, unconscious act of walking is neurologically actually very complicated. She has retrained herself and others with Parkinson’s.
No, this is not a step-by-step, how-to-live-with-the-disease book. This is something much deeper. To the author: Thanks for the gift of your insights.