The short answer is, yes. Yes it can.
Believe me, I am as surprised as anyone to type that. But it is the truth that I now live, walk and feel in me. Yes, aDBS can functionally cure Parkinson’s disease.
For the past two weeks I have been living my best life, coasting along the French Riviera, taking French classes and spending entire days forgetting that anything was once wrong with me.
And it’s not just me. I got a new French tutor earlier this week. Today in our lesson we discussed a text in which the person involved had some memory problems. That led me to remark that it might be some kind of dementia, to which my teacher told me that she has two parents struggling with dementia and a history of Parkinson’s disease in her family. That led me to say “Devinez quoi, moi aussi j’ai la maladie de Parkinson, mais j’ai peut-être découvert un remède sous la forme d’une nouvelle thérapie appelée stimulation cérébrale profonde adaptative” (“Guess what, I too have Parkinson’s, but I might have stumbled upon a cure in the form of new therapy called adaptive deep brain stimulation.”)
She seemed kinda perplexed that she could not detect any signs of a disease that she thought she knew from someone diagnosed almost 10 years ago that had been sitting right in front of her, 2 hours a day for almost a week. She also made me explain what I meant by the words cure and what is adaptive deep brain stimulation.
(Side note: The speed at which I have been able to pick up this language, evidenced by the fact that I was able to at least somewhat explain all that to her after having taken only two weeks of classes in 25 years, prompted me to write this to my own neurologist, Prof. Alfonso Fasano, just yesterday:
Question, is the Basal Ganglia thought to be involved at all in learning non-motor skills? I ask because I feel as though in just 2 weeks my ability to understand and speak French has skyrocketed, I started out remembering next to nothing from what I had learned in school 25 years ago and now I can get by pretty well here. Feels almost like that limitless pill from this movie…but without some of the raging mania. 😉
Curious if other patients have reported anything similar?)
PS. If there are any such patients out there reading this, please do write about your experience in the comments below.
However, I want to stress that I do not throw the word “cure” around lightly and that I need to be very clear what I mean when I use that word.
For any therapy to be called a cure for a chronic degenerative disease like Parkinson’s, it must be able to rewind the clock and bring the patient back to the state they were prior to the onset of their disease while also halting any future progression. That is also the bar that the neurodegenerative disease community should set for both industry and regulators for many so-called disease modifying therapies in the pipeline. Though for those therapies the turning back the clock timeline needs to be appropriately set for each therapy being tried.
Bear with me now dear reader as I throw some numbers your way. These are what are classically used by movement disorder specialists to define this disease, the UPDRS (Unified Parkinson’s Disease Rating Scale). Mine went from 50+ before my surgery to 20+ after the continuous settings were tuned to 15+ after the adaptive settings were flicked on. (For those who want to better understand that scale and what those numbers mean, click here.)
Though I do wish I could get one of those experts to come test me here as there are a myriad of other factors that have me feeling very good nowadays. The weather has been near perfect for me, I love anytime I can go outside in shorts and t-shirts and be completely comfortable. The food has also been, as the French here say “C’est mourir pour” (“To die for.”) It’s also pretty healthy as many items in supermarkets and restaurants are stamped with an A to E rating for healthiest to least healthy. (Something some parts of the world, cough cough *America* cough cough, could really use) I’m also getting plenty of exercise as I go on long hikes almost every other day and get plenty of sun as I’ve spent a good bit of time out on the water here. I feel like there are times when I’d be down to a 5-10 on that UPDRS out here which would effectively bring me back about 10 years to before my diagnosis.
Another way to empirically describe the benefits I feel is through the reduction I have experienced thus far in my medication. Before DBS I was on 6-700mg of Levodopa/day + 2-3mg of pramipexole + 3-400mg of Amantadine. During my peak ONs I would be fairly dyskinetic (an uncontrollable writhing motions) during OFFs I’d be very stiff and have a pretty pronounced tremor. Today all of that has come down to about 75mg of Levodopa per day and I rarely experience dyskinesia anymore.
Subjectively I’d say that my OFF period now seems to be about 90% of a normal person’s and holding steady one year post turning aDBS on.
Now for some caveats. One, no one knows how long these benefits I have experienced will last. We do not have any data on aDBS to go off. Two, I have to stress just how good my pre and post-op care was. I had nearly unfettered access to some of the best doctors and surgeons in the world at the Toronto Western Hospital, something most patients sadly do not get. Three, I had an incredible home environment to come back to where I had two loving retired parents and an extensive family to lean on whenever I needed.
Also, probably the most important caveat for me to mention is that I do not know if I am myself, “cured”. For all my research and all my speculation about the cause of my illness, I still do not know what is wrong with me. We will probably never know what the primary cause of this disease was in any individual except for a few extremely rare genetic cases.
Also, it needs to be very clearly laid out what kind of symptoms DBS can help patients with. If you have a great surgical team that knows where to properly place the electrodes in you then you should expect to see some help in those symptoms associated with motor issues or lack of sleep. If you suffer from non-motor symptoms that are not sleep related then chances are DBS will not be able to help those symptoms.
Oh, and I still do not know if aDBS has done anything to slow down the process that kicked off the neurodegeneration in me. Thankfully, I do now know with pretty good specificity the location of that degeneration in me.
Now, I could show images like the ones above and try to explain what we think we know about the pathways involved, but to be honest, no one knows how relevant any of those general descriptions we have of the brain are to me or to any individual diagnosed. But, I can say that by activating the dorsal part of my STN through DBS my team and I have managed to regain most of my ability to walk and move about the world and, most important of all for me, to sleep peacefully again.
However, there are still a few lingering side effects. Which of these are the disease progressing and which are due to the surgery or the adaptive settings no one knows, though I suspect the latter as many were apparent almost as soon as it was switched on. For example, I can no longer really swim, I find that many such activities that require a good deal of bilateral upper and lower body simultaneous control to be rather difficult now. I also still experience some gait/balance issues, though those I believe I could ameliorate if I finally got my ass to do some physiotherapy and lose more weight. (Hi Mom! 😉
Finally, the technology itself still needs to improve. The whole point of aDBS, as far as I see it, is to act in some capacity like the part of the brain where that electrode gets shoved into and replace the lost/damaged circuitry. We are finally beginning to detect a few of the things going wrong in the brains of those diagnosed, now we need to continue to push the technology so that we can replace those lost functions with even more fidelity than we currently can.
I’ll finish this post with the prescient words of Prof. Alberto Espay who said this to me prior to my surgery…
“You are living proof that there is no “Parkinson’s” but people living with some form of what we call PD for lack of a better name –and everyone is different. I fully agree with Alfonso (Fasano). Yours is a pure nigrostriatal form, unlikely to spread to non-motor regions and, as such, not that critical if we never learn of its biology (which, in turn, is critical to many others with far less benign variants, and the reason we created the CCBP). A confirmation will be that post-DBS life barely reminds you of any symptoms of PD. I do hope you will have some baseline levodopa, though, since that’s important for mood, etc. Take as much time as you need. Learning what will fulfill your sense of purpose best is very important and only you can do that. I shall continue to root for you and look forward to our next time together. Much, much love from Cincinnati! ❤️”
I also just had this exchange with him just a few hours ago…
Me: I have a question that I am wondering if you’d be willing to answer for me?…Based on what you remember about what you saw in me both before DBS (when I was living in Cincinnati, end of 2019/beginning of 2020) and afterwards (at the MDS conference in Madrid last month), how would you describe how much I have improved?
Dr. Espay: You’ve improved a lot. Dyskinesias are gone. I saw none of that. You have gained a little weight but that’s a small price to pay for the stability you have gained. I would qualify DBS for you as a major success.
Thank you for sharing and for being part of the aDBS clinical work! I am about to have my Percept turned on in two weeks. Everything you experienced is the reason I decided to take the plunge into DBS, as I will be able to “upgrade” to aDBS when and if it becomes commercially available in the future. I am happy for you and hope your success continues!
Glad to hear Ned, fingers crossed it works out for you as well as it has for me.
Thank you!
Félicitations Benjamin !
I look forward to future updates.
Alex
Much appreciated Alex!
pure nigrostriatal form ???? What does that mean is there a study or piece of writing that explains that? thanks
Thank you for the questions DKDC. From my understanding most people with Parkinson’s have some level of degeneration of their nigrostratium, it seems to be the part of the brain most hit by this disease. It is also more associated with movement disturbances and for me, it seems to be the only part affected….so far.
I love this essay, Ben! You also fit my definition of cure. Keep up the great work!
Thank you again Alberto for all that you’ve done for me and all that you continue to do.
Seems like some kind of caution might be important here.? How many people have the pure nigrostriatal form? Does this mean Ben is really “cured” or just in great shape for the next 5-10 years? How soon is ai dbs or adaptive dbs going to be available to all? Etc. Thanks. Good news regardless.
Not sure which part you’d like me to caution people about more here? I think I put all the most important caveats in the text but happy to change something if you see a need?
I think it’s too early to say I’m cured of anything, these next 5-10 years will give us a clearer picture.
aDBS should be available to all who have Medtronic’s percept device once this ADAPT trial is finished. My part in that trial will end in about 10 days but then we will need to wait for all the other participants to also finish and then wait for Medtronic to process all the data. I think it’ll be another year+ before it’s all finished and published.
fair enough. sometimes people read or remember selectively.
aDBS should be available to all who have Medtronic’s percept device once this ADAPT trial is finished. Ihave a medtronic percept….Will aDBS require another surgery…..Do you different leads implanted? …Thank you in advance
I hear – and I have no special contacts – that A-DBS might be available soon – as in 2023?. And that one would need a different IPG but the wires in ones head are probably fine. (might be fiction – but that is what I heard from a reputable source).
I suppose medtronic would license the technology to the other companies – or they would come up with their own versions? (Pure speculation on my part).
And so far it works only about 50% of the time – but should improve. (from an actual study).
Just received a message from a good friend of mine in the field who asked that his reflections about my DBS remain anonymous. I asked him basically the same question I asked Alberto…
“Although I made these observations before vs after DBS, there could be many other reasons for change in non-motor behavior (experience/age, corona pandemic, or even trauma due to surgery?) – thus it‘s difficult to say there is a causality to DBS for all the changes you and others observe.
– externally, the motoric improvements seem very obvious; yet you still have the same independence that you tried to show before but now you can live them even more than before
– much much fewer fluctuations of your motor behaviors; more stable and secure movements
– personality wise: still a curious young man, eager to learn about his immediate environment and the world in which he lives. Trying to understand how he can fit into this world or how the world can fit to him!
– personality wise also more relaxed, enjoying his live, laughing with an increased sense of humor
– although more frustrated about research that should improve his condition, mostly appearing at peace with his own situation. Sometimes a bit more cynical and taking on controversial perspectives, perhaps likes to provoke more than before.
– I do think you have overall a more positive attitude towards life with a stronger sense of purpose”
Here’s my brief story. But first, sorry about some level of incoherence in this post. Anyway, brain stimulation is facinating and certainly should be widely available in the USA. This necessitates a breakup of the control system that prioritizes profits over curing patients. I saw all kinds of doctors for (30) years, including 2 neurologists (the second one a MONTH ago). Right after seeing him I decided to get Deep Transcranial Magnetic Stimulation therapy. He did not mention TMS. I knew about it. Can anyone imagine seeing doctors for thirty years and not one of them helped what was termed chronic fatigue? Not one doc except this Pakistani doctor in Detroit – who started me on my quest. Other than that most doctors (and nurses, and administrators) are myopic, not inquisitive, patient throughput intensive, and mostly concerned about their vacation and the weekend, and their money. Docs who are offended by this sort of statement should be – the ones that aren’t are real doctors and know this to be true of their colleagues.
I’ve gathered, through the years of googling and talking to doctors that – I had a stroke at 18 months old. It is due to almost drowning. They found me at the bottom of a pool and I was purple. This isn’t normal and now I wouldn’t expect a doctor to determine / diagnose this b/c doctors in America are rewarded by how many patients they see during a day. So for close to 3 decades I was the doctor, the diagnoser. And the clues to it are apparent – which I won’t go into but just say my body contracted so much that my organs were damaged – but amazingly – our bodies can take alot and still work. So I think the Deep Transcranial Magnetic Stimulation did something to my brain that altered its function, for the better. What TMS focuses its stimulation on is the DLPFC (Dorsal Lateral Pre-frontal Cortex). 95% of TMS focuses on this brain organ. I haven’t really researched it on google much but the neurophysiologist at Asha Hospital in Hyderabad, India said the DLPFC is an area where we literally make decisions. It’s also where the symptom of depression can be altered. It’s a fascinating area of the brain that, not only addresses depression but also a myriad other brain functions. It seems it’s a vortex of brain activity where alot goes through it. I had (2) main symptoms. One was this nauseous, vertigo-like, non-equilibrium feeling where one is slightly unbalanced when walking or when standing still or sitting on a couch. By far the most awful symptom, and truly the one that made me want to commit suicide – for many many years. It was also accompanied by an orchestra of pain that would arise spontaneously. Sometimes a sharp pain in my head, then it would change to the whole head, then partial head-pain. Always a pressure too in my head. No rest, no relief – unless I was laying down and sleeping alot. This is largely gone. The other symptom is a consistent pressure centered around the upper part of my nose about 2-4 inches within my brain. It’s a contractive feeling, like a muscle contracting. It doesn’t have a fluctuating energy of the former symptom – which was wicked. It’s just a consistent contraction that never releases. At times I feel that it has released some, and typically at night I feel it more when going to bed. In sum, Deep TMS totally helped me. They did sprinkle in some Theta Burst Stimulation about 4 times. Brainsway is the TMS machine I was treated with. I would say be careful of these brainless greedhead neurologists who want to do (40) sessions. God I really hate doctors, generally speaking. I never show this when talking to them and – mainly b/c I know its crazy to hate them and that they may say something that helps me – which is of course important.
So excited to hear how you’re doing Ben! I shared with our committee – they said “Fantastic! Amazing and very encouraging! Very inspiring and hopeful article”. Hiking and French lessons – that’s impressive and fun!
Thanks Jen, great to hear from you and good to know these articles are having an effect.
I am so happy to read about your amazing success Ben! Wishing you continued good health and beautiful moments to share!
Thank you kindly Missy.
Benjamin, congratulation! I remember you from Kyoto, I was so lucky to be there.
I’m interested in how aDBS has helped your sleep. My motor symptoms aren’t too bad, but I’m having significant fluctuations (a lot of food interference plus shorter duration of effect), and my major nemesis is sleep deprivation.
I had insomnia prior to PD diagnosis in 2015, but it’s worse now. I’m wondering if improved sleep is due to better control of motor symptoms, or do you think the aDBS has a direct influence on sleep?
Hi Rebekah, I sleep like a baby now. Prior to surgery I was getting 2-3 hours of sleep at a time, now I get 8-9 a night. It’s heavenly.
so you have adaptive DBS by Medtronics? how is that different from normal DBS? maybe you will still get result as good as normal DBS?
In my opinion the results have been better than normal DBS.
I have been reading quite a bit about adaptive stimulation strategies, including the medtronics percept studies. I am scheduled for BDS this month but will be getting the Boston Scientific Vercise directional leads. My hope is that they will also implement adaptive strategies. Any thoughts?
Hello Benjamin- It appears you have had some amazing contacts in the field. Is. there anyone who might be able to address my question above. Will the Boston Scientific Vercise directional leads be able to implement the adaptive part of aDBS? Thanks so much for your insights.
Hi Laurak, my understanding is that the Vercise device will not be able to support adaptive algorithms, I may be wrong though and this would be a great question to ask your neurologist.