DBS (or how to become a cybernetic organism)

I have always loved Star Trek, Star Wars, Star Man (I guess anything with Star in the title). Data was one of my favorite characters and one of the best episodes was when he was captured by the Borg. Since not everyone is a science fiction junkie, let me give some context.

The Borg were a race of cybernetic organisms that jaunted around the galaxy capturing and transforming all they came across into one of them. This transformation included swapping body parts for mechanical appendages and connecting everyone to the “collective” (basically a gigantic neural network). Data was an android that always wanted to become human, so instead of giving him machine parts, they gave him human skin. You get the idea.

In the real world, these concepts are quickly becoming a reality, and now I get to be a part of it!

If you have been reading my posts, then you know that I have had Parkinson’s disease (PD). I don’t want to complain, but it sucks! There is no cure and over time the disease progresses to a point where you basically can’t move and you end up dying from complications. But according to the medical literature, you don’t “die” from PD. What?? So I get aspiration pneumonia because I can’t swallow correctly, so I die from pneumonia brought about by…

I am 12 years into this ordeal (I am 52) and I have thrown my body to science once (gene therapy almost 3 years ago) and I am going to do it again. The gene therapy was experimental, meaning I am around one of 50 people in the world to have had this done. And although Deep Brain Stimulation (DBS) is an approved therapy, it is still pretty cutting edge. To have both procedures done puts me in a pretty rare group, maybe 4 or 5 people in the WORLD!! Boy do I feel special.

The gene therapy involved drilling two holes in my head and feeding tubes into my putamen and “bathing” it with a viral vector that infected the cells and co-opted them into making an enzyme that helps breakdown dopamine, which is what my brain lacks.  I still needed to take medication, just much less of it. The only problem is I became much more sensitive to dopamine and one of it’s side effects, increased dyskinesia (uncontrolled movements).  It is amazing how many calories one can burn by constantly moving. I lost 20 lbs. and according to my wife look way too skinny (my cholesterol and BP also dropped dramatically). However, my cleaning bill went way up as I bathed fellow diners in restaurants with food from my wildly swinging fork. My wife refused to sit next to me for fear of being impaled by a steak knife. I was sitting at one of my son’s soccer games and was having a particularly bad day moving around ALOT and this boy around 6 years old comes over and stands in front of me just staring.

He says, “you like to dance, huh”?

I replied “Yep, I sure do”.

“But there is no music” he says.

Too which I replied, “It is in my head”.

It also requires that I take small doses of my medications every 1 to 1.5 hours in order to try and minimize the dyskinesia. You can imagine how tiring this routine can become. Moreover the motor fluctuations between being “on” and “off” are a problem. That is I am either moving around like Jiffy Pop popcorn on a stove or a shuffling tortoise on the Galapagos islands. Very little of the sweet spot when all is relatively normal. The potential solution, DBS.

So in three days, I once again turn my head into Swiss cheese. Two more holes, but this time I get hardware wired in and I become a cybernetic organism! This involves two separate surgeries one for each hemisphere. The first requires feeding a tiny electrode into the globus pallidus on my right side and the second into the same region on my left. During the second surgery they implant and connect essentially a pace maker near my clavicle. This device is approximately 2″x 2″ and 1/2″ deep and will constantly send current to my brain. This stimulation will hopefully reduce my need for medication and also help alleviate the dyskinesia. If I had known this before, I would have just stuck a fork into a wall socket. Much cheaper and takes only a few seconds! The surgery also has the usual warning labels, such as stroke or death. Kind of like those T.V. ads: If you take X tell your doctor if you start bleeding uncontrollably, have muscle weakness, etc. as this can lead to death. Makes you wonder why anyone would take it in the first place!! So what else or ti allo as my wife says in Greek.

So my kids are really excited, as with this surgery I get a free I-touch. This actually scares the hell out of me as it is essentially a remote control to my brain. One of the first questions my son asked is what apps it has pre-loaded?!! Depending on the adjustments, it can make me feel tingling sensations, effect my speech, my gait, etc. My wife asked the neurosurgeon if there was a wash the dishes mode. I can see it now, in the middle of the night I start hearing rap music in my head or in the middle of an argument my wife grabs the I-touch and hits silence mode! What if I lose the damn thing or my kids decide to load flappy bird and send me winging through the super market. It also requires a bit of a lifestyle change. As if PD wasn’t enough of a game changer.

Anything involving electromagnetic fields is to be approached with caution. I won’t be standing near the microwave anymore. They say it shouldn’t be an issue, but I think I will err on the side of caution. The pre-op appointment included a story of one individual who had to have an emergency surgery and had an unknown break in one of his leads. During cauterization the lead heated up and fried his brain stem! Right. Dental visits become a risk as placing the drill near the unit may cause it to shut off, ditto with airport security. At least it just shuts off and can be turned on again. There is also a risk of battery leakage, infections, etc. Again, one of those commercials. But I think well worth it if it can bring some peace to my “dancing” body.

So, if everything goes as planned, I will write another post. I am taking essentially two months off of work. Also happy birthday to my wife, Fadya, as this post is one of her birthday wishes (I don’t know why she likes my writing so much, she thinks I am the second coming of John Steinbeck). Also thanks to her and my family in advance for all the support and help that will be required in the coming months! I couldn’t do this without them and their love.


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