This past November, I became one of the first human beings to merge my consciousness with that of a machines.
As deliberately overdramatic as that sentence may read, it is a true statement. You see, last November, me, my healthcare team at the University of Toronto, along with the team overseeing my clinical trial at Medtronic, decided to turn on the adaptive settings in my deep brain stimulator. This allowed an algorithm to decide how much stimulation to give my subthalamic nucleus at every single moment of the day.
So far, the results have been pretty miraculous.
Last June, I decided to get those two six inch long electrodes you see in the picture above inserted all the way through my brain (click here to read all about that day.) I did it because I felt as though the medications I was on was making my form of Parkinson’s disease unmanageable. At the time I was taking six or seven tablets of Sinemet every day. Each pill, if it absorbed properly, would cause the dopamine pathways in my brain to spike rapidly about 40 minutes after I took it. This would give me pretty severe dyskinesia (uncontrollable writhing movements) that would last for about an hour. I would then get about 20 minutes where I’d feel ok before the bradykinesia and tremor (the two more commonly associated symptoms of PD) kicked in again. So, then I’d take another pill and that cycle would resume.
After we began the programming sessions, we began gradually reducing my medications, which also included a dopamine agonist and some amantadine. After months of titrating and finding just the right settings for me, we decided to, for the first time ever in a clinical trial outside of Japan, flip on the adaptive stimulation and see what would happen…
Thus far, the adaptive stimulation seems to be working much better than anyone on my healthcare team could have expected. I’m down to less than a single pill of levodopa per day (which I chop up into quarters) and I have cut out all of the rest of my medication.
The reason why this seems to be working so well in me is because it seems like one of the theories in Parkinson’s diseases seems to be somewhat accurate. That is that desynchronized oscillations in beta frequencies correlate with motor symptom severity in specific forms of Parkinson’s. If you want to learn more about this there is now a lot of scientific literature you can read, I’d recommend this, this and this, or watch this video with the person who might be most responsible for advancing this therapy into humans, Prof. Helen Bronte Stewart.
Now, despite all of the improvements I have felt thus far I do need to also give a few words of warning.
The first and most important is that this is not a cure and I don’t think we have enough evidence out there to construe it as one. Whatever is causing my specific underlying cell loss, is presumably still going on.
Also, even now there are still moments and even whole days when I still look and feel somewhat Parkinsonian. Though it’s not as bad as it was before.
In addition, there are some weird side effects. For example, I find certain vigorous activities that require a lot of bilateral control, such as swimming, to be quite difficult. Also I now have some weird neurological ticks that honestly feel like some kind of glitch but which I suspect may just be some weird new Functional Neurological Disorder (FND). (Click here if you don’t know what an FND is.)
Finally, there’s the mania as well as some other weird behavioral issues that have crept up. I’ve been advised not to go into all of them quite yet, but click here to learn a bit more about what those might be.
All told though, I’d do it all again in a heartbeat. The symptomatic benefit I’ve experienced over these past few months continuous to feel like a bona fide breakthrough.
But, there is still a lot of work to be done to improve this therapy. For one, the surgery itself is still incredibly uncomfortable and comes with an assortment of different risks that patients must weigh when making this decision. For those wondering, here are the choices I was weighing before my own operation.
Also, the available hardware and software that comes with DBS is still rather old and very limited in what it shows both patients and clinicians. Something I am trying to help improve through my new role at Rune Labs.
And of course, there is the costs associated which makes this procedure unavailable to most of the world. Not only do the costs make it unavailable to most who could benefit, but the expertise and care one needs afterwards makes it such that there are very few centers in the world where I would feel comfortable even going through with the operation.
But, as I mentioned before, I am feeling much better now than I did this time last year. So much so that I am now once again living independently, which at the moment means living above the cloud line in a yurt in a vineyard with the best airbnb hosts I’ve ever had in a place that looks like, well, paradise…
Looking good Ben. Glad you’re doing well. I’m not liking all the drugs I’m taking so your success reducing and almost eliminating PD meds sounds pretty cool to me.
So happy for you, Ben. Thanks for trying this bold new idea–I hope it continues to provide benefits for you.