In 1985, I produced a documentary for the PBS series NOVA, entitled “The Case of the Frozen Addicts”. The film told the story of six young California drug abusers mysteriously struck with the symptoms of Parkinson’s disease, a neurodegenerative condition that normally affects the elderly. Bill Langston, then an unknown clinician at the San Jose Valley Medical Center, discovered the unlucky individuals languishing in psych wards and jail cells and had temporarily reversed their symptoms with the drug L-dopa.
In time, Langston and his colleagues had cracked the mystery. The six young people, it turned out, had injected a bad batch of synthetic “designer” heroin. Unfortunately for them, the back street designer 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, this deadly molecule proved of immense scientific importance. Scientists had been hampered in their efforts to study Parkinson’s because only human beings get it. To make real progress, scientists need ways to study diseases in animals — using an “animal model”. MPTP, therefore, changed everything. This neurotoxin, it turned out, could rapidly induce Parkinsonism in monkeys, as it had in the six addicts. The animals froze up, their limbs tremored, and movements got smaller and slower. As Bill Langston put it “MPTP was like really a bracing tonic… Suddenly, we had ways to study why cells die in Parkinson’s disease. With the animal model we could test new medicines as fast as you could make them.”
A further irony was that both Bill and I benefitted considerably from the addicts’ tragedy. The episode transformed Bill Langston’s career. He went on to become an internationally renowned neuroscientist founding his own research and clinical center: The Parkinson’s Institute. My career benefitted as well. It’s not an exaggeration to say “The Case of the Frozen Addicts” established my reputation as a documentary producer and science journalist. I made a follow-up NOVA/BBC documentary “Awakening the Frozen Addicts” in 1992, and Bill 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 went on to contract Parkinson’s disease myself. Since learning of my fate, Parkinson’s has become my journalistic beat. I write this blog for the Journal of Parkinson’s Disease. I am 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, Bill Langston and I have just brought out a second edition of The Case of the Frozen Addicts (IOS Press) — 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 US patients to undergo deep brain stimulation — successfully as it turned out), have passed away.
Partly due to the discovery of MPTP, there have been enormous advances in Parkinson’s research in the past two decades. Sadly, so far, those advances have not delivered a convincing disease-modifying therapy, let alone a cure. In some ways, the challenge of conquering Parkinson’s seems even harder than it did when Bill Langston discovered the frozen addicts in the 1980s. Back then, PD was seen largely as a relatively simple movement disorder resulting from damage to a tiny part of the brain. Today, neuroscientists frame it as a systemic malady caused possibly by a rogue protein (alpha-synuclein) that produces molecular mayhem just about everywhere. The good news, however, is that today’s 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.