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.)
I have had Pd symptoms since 1963. I was only diagnosed wit Pd in 1992, when I was prescribed sinemet and symmetrel. In 1994 my neurlogist took me off those two medications and put me onto selegiline.
At the same time as that happened, I stopped going to the gym for 90 minutes every day except Sunday. I started fast walking every second day and within four months my times for walking improved from over 10.5 minutes per kilometre down to less than 9 minutes per kilometre.
At the gym, my performance had continued to reduce more quickly since diagnosis than it had previously.
After 8 years of fast walking and taking selegiline, I was able to come off the selegiline and have continued to do the fast walking and have lived a ‘Normal’ life since then. At the age of 84 can still walk 7 kilometres in less than one hour.
I still have several non-motor symptoms of Pd but they do not cause me any stress.
I have been unable to get any medical person or any Pd support organisations to go into what has happened to me.
I have been told that I do not have Pd, by people who have not examined me.
I have been removed from my position as Chairman of the South African Parkinson’s Association (PASA)
What I do has been successfully tried by many people, all over the world, but nobody professionally involved in dealing with Pd has every expressed any interest in what I have done.
Every single Pd patient with walking problems that I have shown how to consciously control their walking, has failed to be able to do so. That included everybody in wheelchairs, who were still able to stand up.
WHY IS NOBODY INTERESTED IN TALKING TO ME?
As you know, there are all sorts of similar claims made about a long list of diets, supplements, drugs, meditative techniques, specialized exercise regimes and more that supposedly do wonders for PD. People are, and should be, very skeptical of all of them. The burden of proof is high. If your method can do what you claim then you are going to have to prove it. Currently the best method we have for proving if something works is the clinical trial process. Clinical trials are far from perfect, but until a therapy passes something at least as rigorous as a clinical trial, we simply don’t know if it will work in a population of people.
This is a most refreshing, intellectually stimulating, approach to analyzing where the modern world is at, in regards to looking at a way to tackle finding a solution, to help those of us who suffer from “Parkinson’s”, and it’s seemingly myriad variants. Please continue on, in your journey, and, perhaps, you will come upon an idea, or solution, that needs further investigation. I agree, that this is a great time for PWP, to partake in clinical trials, and opportunities are there, for those who wish to participate. I, currently, am participating in one with the Michael J. Fox foundation. It is an ongoing study. Also, I am participating in DNA studies, relating to this. My Hope is that you will be rewarded, in your quest for knowledge, and that you will find opportunities to apply what you’ve learned, to, perhaps, be of help to you and PWP!
Thanks Doug, hope this helps you on your journey as well.
I thought you might find this interesting. Ben has traveled around the world interviewing researcher’s, doctors, etc. about finding the cure for PD. As he says in this post, it is will be probably 2 -3 decades for the scenario he describes to become reality, but he also points out that “..today is the best time in history to get diagnosed with Parkinson’s” with over 450 clinical trials and many more studies going, the opportunity to find a cure or stop progression is growing. Also, if you have time, today at 12 EST so 3pm PST, the MJ Fox foundation will present a webinar about the current status of research, you can sign up to view it here (sorry for the late notice).
I have been able to stop my Pd progression and have lived a normal life for the past sixteen years, medication-free.
Nobody is interested in looking into it! All people appear to be interested in is more and more medication to treat Pd.
I can maybe help a third of people with Pd, mainly those with movement problems.That is a third more than those being helped at present with medication.
Do you wonder why I am skeptical?
There are many forms of insult and injury the brain may be able to recover from.
People have been shown to recover from Stroke, Neuroinflammation and other deadly ailments of the brain. It all depends on the degree and duration of damage that is caused by the insult or disturbance of the system.
As a theoretical example, instances of neuro-inflammation, supported by the right environmental conditions (lifestyle, medications) can to some extend be limited and mitigated by the brains resiliency.
So it is remotely possible that the body can heal itself from some of the genetic/environmental insults of the SN.
However it is unlikely that the severity of the damage and the threshold exceeded in symptomatic PD can be remedied by a simple and indirect interference with the disease processes.
Unfortunately, for any resilient and redundant system, there are limits to the extend and degree of damage even the most sophisticated system can cope with.
These views are my own.