If you were facing a daunting diagnosis you would want the news to come from someone like Dr. J. William Langston.
Engaged and intelligent, he has the kind of optimism you don’t expect from a physician who has spent decades working to unravel the complexities of Parkinson’s disease.
“Things have changed dramatically in that time,” Dr. Langston says, his eyes squinting as he smiles. “There is a lot to be optimistic about.”
Some of those changes are because of the work he’s done. As the Scientific Director, Chief Executive Officer and Founder of the Parkinson’s Institute, Dr. Langston was recently singled out for his work and awarded the 2012 Robert A. Pritzker Prize for Leadership in Parkinson’s Research.
After picking up the award in New York, Langston, who also serves on 23andMe’s Parkinson’s Research Community Scientific Advisory Board, stopped by our office to talk about the state of the science of Parkinson’s and share a little about his career in the process.
In a way, Langston is already the doctor for anyone with Parkinson’s — his contributions to research, treatment and diagnosis of the disease are that important. And those contributions started almost 30 years ago with the famous case of the “Frozen Addicts.” This fascinating medical mystery, solved by Dr. Langston, involved a handful young people who in a matter of days became debilitated with advanced Parkinson’s symptoms that would normally have taken a patient decades to develop. Langston found that they were all linked to the same batch of synthetic heroin, contaminated with MPTP, a neurotoxin that “lasers like a Nike missile on the same nerve cells in the brain that die in Parkinson’s, (in the) substantia nigra,” Dr. Langston said.
“That really revolutionized research because it gave us a model and a way to study neurological cell death in Parkinson’s,” he said.
That work led Langston to found the Parkinson’s Institute, a place where basic research, clinical research and patient care could be done side-by-side. He believes it gives context and perspective for his researchers.
“Anyone working on this disease will feel a sense of urgency, because they see it,” Dr. Langston said.
And in the last 30 years the work has helped produce some of the insights that have significantly changed outcomes for people with Parkinson’s.
Doctors have changed how they use drugs to treat the disease. For a time the problem wasn’t so much that the drugs didn’t work but that side effects would build up to the point where doses would have to be lowered right at the time when they were needed most. Now, doctors are getting much better at calibrating the use of medicine and managing the symptoms of Parkinson’s.
While there have been great leaps in understanding of the disease, insight into its progression and avenues for research into a cure, Dr. Langston pointed out that simply diagnosing Parkinson’s early enough — when symptoms are largely benign — and then using medication to halt or drastically slow its progression, would be a great success. Here he felt researchers are very close.
“Already we are on the cusp of bringing out new drugs that work against these side effects and if you put that together with an early diagnosis, you are looking at really managing the disease and giving people a good life,” said Dr. Langston. “Because those early symptoms are so mild, if you get in there and halt it at that point that’s almost as good as a cure.”
This, in part, is why finding the early indicators of the disease is so important.
When he first started his association with 23andMe, he would get questions from those who wondered why you would want to know if you had a genetic risk for Parkinson’s.
“I hear that less and less I think because 23andMe is helping to change that,” he said. “People see value in it. Knowledge is power. The more you know and understand the more you can do.”
Beyond looking at genetics there are other early indicators. His team is looking at things like autonomic innervation of the heart and REM sleep patterns, or loss of the sense of smell as early indicators for the disease.
“It’s a major focus of the research to find the markers before you have any disability,” he said. “We’re hoping that 23andMe will be part of this effort to find the tools where we can pick this up.”
But of course, Dr. Langston isn’t satisfied with merely managing the symptoms of the disease; he’d like to cure it. Here, too, he is very optimistic saying what we are so much closer in understanding the underlying causes and pathways for the disease. We are seeing more and more the interrelationship between genetic and environmental factors in the disease, “this notion that your genetics loads the gun and the environment pulls the trigger,” said Dr. Langston.
But even in cases where genetics isn’t involved, genetics research provides great benefit, he said.
“It’s not at all unusual that a rare genetic form turns out to be hugely informative for the common sporadic form of the diseases — we’ve seen this with Alzheimer’s,” said Dr. Langston. “ Each of these new genetic variants, some of which are incredibly rare, have led us to a new protein and that protein leads us to a pathway and that pathway is obviously leading to cell death and Parkinson’s.”
Langston said many of these pathways intersect with mitochondria, the energy packet of cells, and offer giant clues for research into sporadic forms of Parkinson’s.
He sees great promise for what is being done in 23andMe’s Parkinson’s Research Community.
“That is the future, it really is,” he said. “You’ve got the questionnaires and the genetics. I mean most people with PD can tell you if they or someone in their family smoke, but they can’t tell you their genetics. Nobody can unless they’re signed up with 23andMe. Maybe someday everybody will know that, but we’re not there yet. That would be very transformative.”