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Doing the DBS

I have completed the first two phases of the Deep Brain Stimulation (DBS) surgery I decided to undertake for relief of my Parkinson’s symptoms this summer. During the third stage they turn on of the electrodes implanted in the brain, and the controller implanted in my chest. This is where reality either bites, or I see a path to a better tomorrow.

When the brain is finally ready to “juice up” the DBS (Deep Brain Stimulation) system it is the culmination of a series of decisions. With the electrodes implanted in my brain without the possibility of extraction (without consequences) or rearrangement, I am committed. I am essentially playing Texas Holdem with my brain, no wild cards – and betting heavily on a room with expert players.

It turns out that the players are all on my side, and how I react to the DBS will determine how much I get out of it. I must let it work, not fight for control. I must play my best hand and not depend on the inside straight. Giving up control is the hardest part so far. So what does DBS do?

The electronic device that controls the system connects with wires under my skin and forms a lump that fits in well with the other lumps I unfortunately have at 67. The connection is wireless from a programming device operated by either my neurologist, physician’s assistant, a representative of the company that manufactured the device, or a significant other or my wife. More on that later. At the extreme they can turn you “off or on”. These are the facts. I once thought that “just the facts” would lead us to a unique conclusion. That is not true.

The first thing I did when looking the neurologist in the eye was to get him to agree (no reluctance on his part) that I have started the artistic part of the process. Programming the device for me is a three month long, three step process of adjusting the signals to the brain followed by ” tweaking” after that.

“Juicing,” “tweaking”….. do we use these terms to soften the reality of what is going on? We are altering the signals the brain relies on to function! Isn’t that serious business? Oh well, it is just “messing“, with the brain, right?

I must admit that the first item on my mind was the hope that all the wireless devices in the hospital were on a different frequency than my device. If you get interference, is it is like an airplane crashing just so someone can tell their Aunt Frederica how the bread rose yesterday. The neurologist assured me that interference would not happen. I wondered if he knew how many cell phones there were in use in a hospital. I was just nervous.

The first “juicing” is a leap into the unknown. What I experienced might be a unique experience. In fact, words are a poor devise to explain what the feeling is like. I can only describe it as a stunning realization of how phenomenal and complex the brain is. Frankly, we should be much more careful when considering playing football, taking a header in soccer, boxing, or not wearing a helmet bicycling. I have done each and “lucky” ought to be my nickname. Or maybe that’s why I am engaged in this endeavor. I will never know.
Miracles are not always easy to understand or to comprehend. Miracles are something I haven’t experienced before. There is no learning curve for a unique event. What I can assure you that this experience is mind altering. It is not terrifying. You only get to this point in the process after being carefully screened for mental stability. They must have not heard me when I said I was an economist.

The process is a multifaceted probing of the differential impacts frequency and signal strength of Parkinson’s symptoms. From tremor to gait to vision and speech to cognitive powers and autonomic functions, such as breathing, the limits are tested and settings are determined by trial and error. When thresholds are reached there is no doubt in my mind that there are limits. Tremor can be ramped up or down, speech can be slurred, vision can be rendered clear or become triple, the ability to walk or move altered, the limbs can be frozen or set free and. Of course, this is the rub; there are trade-offs which must be made. It’s like economics, nothing is free. At one point I simply folded up like a robot that suddenly lost power. That was almost like dying. Actually, it was frightening, but not terrifying because it was out of my control.

Speech, clarity of vision, tremor, and mobility, gait, cognitive powers, etc. are not set independently. They are jointly determined. For example if I have five behavioral goals and two of them are essential such as vision and tremor control and must be set at a specific levels to be tolerable, then I have three choices among my other attributes. For example, speech and mobility that must be set at levels that are suboptimal given the trade-off and the absolute constraints necessary to achieve the goals of vision clarity and tremor control. Reality bites. As the search proceeded I could feel the trade-offs. This taught me that the art is working with the science.

There are many different versions of me that are possible but in each case the range must be within my tolerances. Not all are perfect, such as slurred speech to achieve mobility. All are a variations of what is possible.

Among the seven or eight billion of us there are nearly an infinite number of settings. Our DNA allows only so many variations to be human among the choices of vision, speech, mobility, cognitive powers, and autonomic functions etc.

Cogito ergo sum, is not just a Latin saying. I am human because we have specific characteristics in common with other humans. The process of searching the brain for the DBS settings is testing those limits to find a place we each can live with. The fact that we can accommodate this is amazing, the result is a miracle of imagination and technology. We have gone from drilling holes in the skull to relieve pressure to precisely controlling our vision or to controlling the way we walk, whether we have tremors as well as our cognitive reactions to the world. Someone might say we can use technology to change our soul.

Back to the supernatural. That’s a bridge too far. I no longer have the shakes, I do not move uncontrollably, I can walk when I want to and my speech is not slurred. But I have fuzzy vision and I still take a great deal of medicine and fall when I am forced to move quickly. I have balance issues. I still have Parkinson’s and it eventually will erode my gains. Yet I have maybe ten years or more to love my wife, enjoy my family and see the precious next generation come of age. Remember my wife has the power to turn me off or on by pressing a button. But she always had that power. In addition, have I have the opportunity to enjoy the company of friends? That’s why I had the DBS. That’s why I have learned to relinquish control. What would you do?

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2 Responses to Doing the DBS

  1. Scott says:

    Great article Dennis. I could not imagine turning my control over to someone else so I hope it helps you to live longer on your own terms. Would I turn over control, more than likely it would be a yes and based on my local hospital stay over the summer, I would have gladly traded any material possession to get out and be with my family. I hope that all goes well with you and your managing to maintain. I think the settings would be like tuning a carburetor, a little tweak one way or the other can be great or disastrous.

  2. Tom Anderson says:

    Thanks, Dennis,

    With your characteristic wit, eloquence and clarity, you have described a process that many of us are considering.

    I’m grateful for the team that works with you and prayerful that you have continued success.

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