Tikal, Guatemala. 25 years old. This is where it began for me. Looking out over the Mayan temples peaking through the jungle canopy, sweat dripping from a long hike, I sat down to take it all in. It was then when I felt the first signs that something was wrong, a slight twitching of my right foot. It passed after about 15 seconds, long enough to leave an impression, but not long enough to warrant doing anything about it. Not that it mattered, to this day there still isn’t anything anyone could have done for it, but that won’t be true for long…
The general direction of the field of Parkinson’s research today can be summed up in two words – Detect and Stop.
Detect: Find tools or markers that can identify the earliest signs of disease and enable us to track its progression.
Stop: Develop therapies that can slow or stop it from advancing.
That is the future most research is building towards and that is where most funding for this disease is going. In that future ideally what would have happened to me is that either through some wearable or implantable device, or at a routine checkup, an early signature of the disease would have been detected long before that tremor became noticeable. I would then undergo more elaborate testing that would likely include some combination of advanced brain imaging techniques, blood or possibly spinal fluid draws, a stool sample, or maybe just a simple breathe test or eye scan. The data created would then be fed through machine learning algorithms that would check the results against other known risk factors I may have like genetic variants, family history, past gastrointestinal issues, sleep disorders, blows to the head, known toxic exposures, and more.
Using that information the algorithm would spit out a diagnosis that would likely be a sub-subtype of what today we call Parkinson’s, the word Parkinson’s might never even be used as it includes too broad a spectrum of disease to be meaningful. Then, thanks partly to advances in quantum computing and synthetic biology, I’d get a therapy tailored to fit my unique biological makeup, it could be a pill or two taken daily, or as simple as a one time injection. Afterwards, I might go through some extra tests annually, but once everyone was satisfied that the disease was arrested, that would essentially be it, the whole ordeal that is Parkinson’s disease would be reduced to a few visits to a doctors office. If broadly applied, this would pretty much eradicate all future incidents of this disease.
That is the world most Parkinson’s researchers are trying to build and billions of dollars are now being poured into making it a reality. But that brave new world is still decades away, at the very minimum three if I had to guess. So, what about the seven million living with it today and the seven million more set to be diagnosed over the next 20 years? Well, I’d like to tell you that a simple solution is coming and that before long we will all be up and running like never before, but it won’t be that simple.
However, it is not just empty words to say that today is the best time in history to get diagnosed with Parkinson’s. There are over 450 trials ongoing all over the world just for PD, some of which are therapies that have a chance to slow, stop and possibly reverse the course of this disease, with hundreds more in the pipeline. If we can figure out how to give them to the right people in the right combination at the right time, they may even effectively be a cure. However, a lot needs to happen before we get there.
That is what this series will be, trying to lay out, in broad strokes, what those steps towards a cure are going to look like, how we are going to get there, the challenges to be overcome, and what each person can do to help us get there faster. Stay tuned for more.
Coming up in this series...(tentative schedule)
Part 2: What a ‘Cure’ will be
Part 3: Obstacles on the Way
Part 4: The Bigger Problems
Part 5: Technology to the Rescue
Part 6: The Promise of Precision Medicine
Part 7: The Role of Patients
Part 8: Where Hope Springs
Part 9: The End of PD – Not with a bang, but a whimper
(Note: All the information in this series is based on my understanding of what the field is working on from the hundreds of talks and interviews I have had with experts all over the world. But, I can’t possibly know it all or cover it all, as Niels Bohr said “prediction is very difficult, especially about the future”. So, I welcome any and all corrections, glaring omissions or oversights in the comments below, or feel free to contact me directly at benjaminstecher(at)gmail(dot)com.)