Editor's note: In 1995, journalist Jon Palfreman wrote “The Case of the Frozen Addicts,” a book detailing a discovery that forever changed the face of Parkinson’s research. Years later, Palfreman himself was diagnosed with Parkinson’s.
In 1985, I produced a documentary for the PBS series “NOVA” titled “The Case of the Frozen Addict.” The film told the story of six young California drug users mysteriously struck with the symptoms of Parkinson’s disease, a neurodegenerative condition that typically affects the elderly. J. William Langston, MD, then an unknown clinician at the San Jose Valley Medical Center, discovered the unlucky individuals languishing in psych wards and jail cells and temporarily reversed their symptoms with the drug levodopa.
In time, Langston and his colleagues cracked the mystery. The six young people, it turned out, had injected a bad batch of synthetic “designer” heroin. Unfortunately for them, a back-street drug chemist who’d concocted the drug had made a terrible mistake and synthesized a neurotoxic contaminant called MPTP.
There was a positive irony to the devastating story. While tragic for the victims, the discovery of this molecule proved of immense scientific importance. Researchers had been hampered in their efforts to study Parkinson’s because only human beings get it. To make real progress, scientists needed a way to study the disease in laboratory models — and MPTP changed everything. This neurotoxin could rapidly induce parkinsonism in models, as it had in the six addicts. As Langston put it, “MPTP was like really a bracing tonic suddenly, we had ways to study why cells die in Parkinson’s disease. We could test new medicines as fast as you could make them.”
The discovery of the addicts’ tragedy also forever changed the path of Langston’s and my careers. He went on to become an internationally renowned neuroscientist founding his own research and clinical center: The Parkinson’s Institute. It’s not an exaggeration to say “The Case of the Frozen Addict” established my reputation as a documentary producer and science journalist. I made a follow-up PBS/BBC documentary “Awakening the Frozen Addicts” in 1992, and Langston and I co-authored a book comprehensively telling the full story, “The Case of the Frozen Addicts” in 1995.
But perhaps the biggest irony is that a quarter of a century later, at the age of 60, I was diagnosed with Parkinson’s disease myself. Since learning of my fate, Parkinson’s has become my journalistic beat. I write a blog for the Journal of Parkinson’s Disease and am currently working on a new book for Scientific American (due out in 2015) on the latest Parkinson’s disease research. And with the support of IOS Press and the Journal of Parkinson’s Disease, Langston and I have just brought out a second edition of “The Case of the Frozen Addicts” (IOS) — which has long been out of print.
The true heroes of the story are the six addicts: George Carillo, Juanita Lopez, David Silvey, Bill Silvey, Connie Sainz and Tobey Govea. Three of the group — George, Juanita, and Connie — later traveled to Lund, Sweden for an experimental brain operation. While the procedure helped, it was not able to reverse their neurological damage. They soldiered on, growing old before their time. Today, all but two, Connie and Tobey (who was one of the first U.S. patients to undergo deep brain stimulation), have passed away.
Partly due to the discovery of MPTP, there have been enormous advances in Parkinson’s research over the past two decades. While those advances have not yet delivered a disease-modifying therapy or a cure, there are good reasons to be optimistic. Today, scientists and clinicians have such powerful tools and technologies at their disposal — from gene therapy to wearable sensors — that it seems virtually certain that one day Parkinson’s will be tamed. I hope that I will be there to report on it.