On Depression and DBS

Yesterday morning I walked into another programming session with my neurological team feeling like shit. Not only were my more visible symptoms acting up again: gait and balance issues were making even getting up and walking to the clinic a challenge, my tremor and stiffness made me look like an old decrepit man, and the dystonia along the right side of my body was slowly leering its ugly head again, but I was also feeling something much more concerning, the dreaded non-motor symptoms known as anxiety and depression.

The first question people too often ask in this situation is why? Why was this happening to ME? What were the reasons, the chain of events that lead me to feel what I was feeling. Well, the simple answer is – Parkinson’s Disease. However, as I have laid out in detail before in a book written with Dr. Alberto Espay titled Brain Fables, there is nothing in nature called Parkinson’s. So what was it then that was responsible for what I was now experiencing? Well, if forced to come up with one word to describe it I’d call it nigrostriatal degeneration which I’ve also written about before so won’t belabor that too much.

However the point is that none of those words answer the question as to why lately I had been feeling so shitty. Was it a chemical imbalance that was responsible for this bout? Maybe I just needed to increase my intake of dopamine to fix what was ailing me? While levodopa would give me some relief, in the few times a day that I actually managed to get it to work properly and produce a steady ON Time, those moments were always so fleeting and would quickly dissipate as the highs of the initial dopamine hit would fade and be replaced again by the cold familiar sorrow of depression.

Maybe it was as simple as the frightfully cold weather Toronto had been experiencing lately that was now stretching on and on and on? Or maybe, more frighteningly, this was just the natural progression of this disease catching up with me and that this feeling would be my new norm? Afterall, there is a well-defined history of the two being correlated.

Well, whatever the cause, the more important question is, what can be done about it? As it turns out, all I really needed was a rather minor adjustment on my adaptive deep brain stimulator. But before I dive too far into how I managed to treat this, a few words on what I felt.

(Note: like all things that come with this label called Parkinson’s Disease, what I say below was just my subjective experiences and thoughts, I am not a healthcare practitioner and am not suggesting that anyone else go ahead and get holes drilled through their brain to treat anything that might be going wrong within them. Please consult a healthcare provider before doing anything too rash.)

So, what did I feel? Well, it would begin almost every morning, about half an hour to an hour after getting up. Beginning in my gut as a stomach churning feeling, I’d often lose my appetite completely for that morning and need to relieve myself frequently. But much more debilitating than the physical sensation was a feeling that life itself was hopeless. Not only that my own life seemed hopeless and lived in vain, but that life itself was a cruel joke that the universe was playing on us all. I’d walk around sometimes and look at other people in disgust, what the hell did they have to be so happy about?

Ofc, as you are going through these feelings and emotions it becomes increasingly difficult to even be around someone like that. Thankfully for me, there were little tricks I could do to pull myself out of that funk. Sometimes that meant getting up and going for a walk, sometimes it was going to the gym or hitting my yoga mats, sometimes I’d just bury myself in whatever work I had that day and wait for the feeling to pass but often the only thing I really wanted to do is go upstairs and cry.

The other part of it that I’m learning is more common than it may seem, is that from the outside my life was going about as well as it had at almost any point in the last decade. I had a terrific girlfriend and we had just moved in together, I had an incredibly supportive work environment and colleagues (@ Rune Labs) that gave me the flexibility to work on my own time from anywhere, I had a new book on the way that I was very excited to see in the hands of real people real soon (Reprogramming the Brain), and a new company which I helped launched and was watching slowly mature (Veracity.Bio). What more could a guy want, right?

Well, it turns out that all I really needed to fix that crippling stomach churning sensation I’d get every morning was a tweak up on the amplitude of my adaptive deep brain stimulator (by 0.9 mA to the upper threshold of my stim limits, for those who might be wondering). Once again I found myself stunned at what this battery lodged in my chest and connected through wires in my neck to electrodes six-inches through both hemispheres of my brain was capable of.

I cannot possibly thank enough everyone at the University Health Network in Toronto and Medtronic that made the wonders of aDBS possible for me. Who knows how long the adjustments we made will last but I am eternally grateful for every moment I now get to feel like myself again. In particular I need to thank Drs Alexandra Boogers and Alfonso Fasano as well as nurse practitioner Yu-Yan for all the patience and care you continue to bestow upon me. I’m not sure what I did to deserve so much kindness, but am so so grateful to have each of you in my corner supporting me when I need it.

Original banner image titled “Peaches” was drawn by Cordelia Jiang at age 8, edited by Benjamin Stecher. Here is a photograph of the original…

Mmmwwwaaahhh! 😘😘😘