DBS – Part One

(I am considering using this exceprt as the revised opening to the memoir I’ve written – the overall gist of which is to describe what life is like for an early onset Parkinson’s disease patient – any feedback would be appreciated)

January 14, 2010:  I wake up and I am half sitting in my hospital bed in a large room.  The heavy metallic frame that was screwed into my head earlier in the morning has been attached and locked into some larger metal base that I can’t see.    I can hear the usual blips and beeps of hospital equipment, plus the low hum of static.  It’s chilly, and there are people in scrubs milling about.  One of them notices I am awake, and the next thing I know my neurosurgeon, Dr. Rosenow, is in front of me.  He tells me the static I hear is in fact my brain talking, the impulses it creates converted to audio, and that they’ll be listening to it and talking to me as they install the first set of electrodes in my brain.  The fact that my brain waves sound like static is somehow not surprising to me.

As I sit there, awake with neurosurgeons literally in my head, listening to the white noise my brain is broadcasting, I look around the room, at least the portion of it I can see through my peripheral vision, as the bracket my head is mounted to prevents me from turning.  I see to my left and right a curtained off area that goes in a half circle around me, there is a man, a neurosurgeon I’ve never met before, sitting to my immediate right, and Dr Rosenow is behind me now, talking to me, apparently on the other side of the curtain.   He explains that they are now to the part of the procedure where, before they install the first electrode, they have to make sure they are in the right spot, and that they’ll be “listening” to my brain.  For the next hour or two, Dr. Rosenow, for the most part unseen because, just like the wizard of Oz, he does most of his work from behind the curtain, explores my brain by doing whatever the heck he is doing back there.  This must involve turning a dial of some sort, because sometimes, I can hear the static gradually getting louder, and then I feel my right leg and foot and then hand start to tremble and shake, slowly and gradually at first, then more and more rapidly and violently, until he turns the dial down and the shaking diminishes.  The other neurosurgeon takes my arm and bends it, and when he feels the Parkinson’s cog-wheel effect, they listen for the resulting quick change in the static to know they are recording the symptom; as they go on, I learn how to listen for these slight changes in the static patterns that indicate whether they are in the right spot in my brain.

This is all part one of the two part procedure known as Deep Brain Stimulation, or DBS.  When part two is complete, two weeks later, I will have two electrodes installed in my brain; they will be connected by wires which run from my brain down my neck to the right side of my chest where a neuro-transmitter will be installed.  Once programmed and turned on, the neuro-transmitter will send signals to my brain that will drown out the noise caused by Parkinson’s disease, the noise that is largely responsible for my symptoms of rigidity and stiffness.   DBS treats the symptoms of those Parkinson’s patients who are in an advanced state of the disease yet still young and healthy enough to lead an active life.  For these patients, it is viewed as a second chance, an opportunity to regain capabilities that the disease had stolen, and to retain a level of independence and freedom required to carry on a normal life.   It is not a cure for the disease, and does not prolong the inevitable outcome; rather, it treats the symptoms for a period of time.  I’d been eagerly anticipating this second chance for the past six months, as various complications delayed its start, and between work and Parkinson’s, life was declining in an increasingly repetitive exercise in fatigue and discomfort.  I felt like I was gradually fading away.

4 thoughts on “DBS – Part One

  1. I like this as an opening – I think part of what will make your book interesting is for people to have a chance to better understand Parkinsons. I think your personal insight, as well as the excellent descriptive passages, will help validate just what is motivating you to write. As difficult as it may be to write about some of this, you are educating people about a horrible disease – by now, many of the symptoms and limitations are probably starting to seem mundane to you – but to help those of us who are not experiencing this, you need to revisit and explain. Some very powerful stuff here – not only the horrible aspects of the disease, but also the potential hope of medical science and a potential cure.

  2. I agree that this is a good start. If it were to be an opening, however, I think it needs more.

    Relate this experience to something we that are not familiar with this know. The experience of having someone work inside your head while you are still inside it must be incredible. There must be a hundred ways to describe that so a reader can get a better appreciation for this surreal sensation.

    If this is to be the opening then you may want to start to set the stage for the rest of the memoir. Dr. Rosenow…who I had met XX months/years ago in XX…leading readers to want to know more about that experience as well.

    I think the above is an excellent framework/outline for what could be a really powerful opening that introduces readers to not only DBS, but to D. Gourdoux and your journey. Perhaps expand more on what you have here? More descriptive? Get us in the room with you.

    Thanks for putting this out here for others to read Dave.

    • Brian, thanks for the well-thought out critique. You raise some excellent points. What I posted are the first couple paragraphs of a rewrite of a longer chapter I had previously written. In the first draft of the book, this chapter came much later. I’ve been toying with the idea of opening with this chapter because, as you state, it is such a surrealistic experience that it might be a good tool for pulling readers in. To your point about setting the stage for the rest of the memoir, the rest of the chapter attempts to do that, with much more about Dr Rosenow and what my life as a Parky was like at the time. Your point about doing a better job of getting the reader in the room with me is well taken – that is exactly what I want to accomplish in these first couple of paragraphs, if in fact I do decide to open with this chapter.

      • I’m pretty much giving up on this as the opening of the book – no matter how I tweak it, I just can’t make it work as well as the opening I already had. It’ll still have a place in the book, but I think where I had it was probably the right place.

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