Happy Deep Brain Day


Getting nothing but static/Getting nothing but static/Static in my attic                                                                       – The B-52s                                          

This past Saturday marked the two year anniversary of the most surreal event I have ever experienced – the implementation of electrodes in my brain in part one of the procedure known as Deep Brain Stimulation, to treat many of the symptoms of my instance of Parkinson’s Disease.

Two years later, I have a better understanding of what DBS has and hasn’t done for me.  First and foremost, it has been a wonderful blessing, smoothing out many of the peaks and valleys that were, prior to the surgery, becoming more and more debilitating.   I sleep better and longer at night.

There have been some side effects from the procedure, and some symptoms of the disease that it is apparently unable to address.  The side effects include impacts to my speech and my handwriting.  Frequent and severe and sudden episodes of daytime fatigue still hit me, and I have to be careful if I am driving. Stress exacerbates other symptoms, including tremors that make working a computer keyboard or mouse temporarily impossible.  Because of these symptoms, primarily the fatigue (and repeated episodes of falling asleep in my office and behind the wheel on the drive home), I no longer work.

But make no mistake about it – the DBS has been a success, and I would recommend it to anyone in a similar state.  If it wasn’t for the improvements DBS gave me, I would have stopped working well over a year before I did, and I’d be unable to do the things that give me great joy now, especially writing.

So to mark the occasion, I went back and looked through journal entries and notes I have written over the past two years about my DBS experience.   Here are some excerpts:

Thursday, January 14, 2010:  I wake up and I am half sitting up 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 a low hum of static.  It’s chilly in here, and there are people in scrubs milling about.  One of them notices I am awake, and the next thing I know my neurosurgeon, Dr. R., is in front of me, and 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 prepare to install the first set of electrodes..  The fact that my brain waves sound like static is somehow not surprising to me.

 …   I wonder, as they are poking around in my brain, if they see anything that surprises them.  I have had dreams where they open my brain to find, undetected by the MRI and CAT scans, discolored sections that are rotting and stinking with gangrene, or that large populations of maggots or insect larvae are happily thriving up there, having eaten away a good chunk of my grey matter.   The thought of scientists poking around in my brain and finding the secrets locked inside is intimidating enough – what if, behind that curtain, they have a television screen that is hooked up to my sub conscious to display what is stored there?  What if they could see all the women I had secretly lusted for over the years, or those dark secrets I had hidden from the world, like the time when I was a kid and ate the last of the package of Oreo cookies, only to blame it on my little sister?   What if they poked around up there and realized that this brain, substandard and inadequate, isn’t worth the effort?

 …  Every Parkinson’s patient is familiar with the concept of “on” and “off” periods.   “On” periods are the times when the medications are working and symptoms are minimized, “off” periods are the times when the medications have either worn off or haven’t kicked in yet, periods of time when the symptoms are most exacerbated.  The primary medication for PD patients is some form of Sinemet, or a combination of carbidopa and levodopa.  For me, at the time of the DBS surgery, I was taking a 200 milligram dosage of Stalevo (a dosage of 50 milligrams of carbidopa  and 200 milligrams of levodopa  and 200 milligrams of entacapone) every three hours, with the “off period” beginning about 45 minutes before I’d  take it and lasting until about 45 minutes after, meaning that for every three hours, close to an hour and a half, or 50% of the day, was spent in varying degrees of being “off”.  These periods would usually announce their beginning with a very slight tingling in my toes, followed by the rigidity that would slowly spread until it inhabited every inch of my body.  By the time of the surgery, at the peak of these off periods, on the worst days, the resulting discomfort would become unbearable.   Even at its peak, my rigidity isn’t the sharp and agonizing pain that people with Rheumatoid Arthritis, for example, feel; rather it’s an all encompassing discomfort from which there is no escape.  It feels like what I imagine rigor mortis would feel like, like you are turning to stone, like you are being converted to a living statue of yourself.  The natural reaction to this discomfort is to seek a position that will ease it, by either sitting or lying down or shifting your weight one way or another but you soon realize these attempts are futile, and all you can do is take your pills and wait for them to kick in.  For me, it got to a point at work where, at the time of the surgery, I’d wander from my downstairs office upstairs to the nurse’s station and lay down on her bed in the back, not because it made me more comfortable but because I was out of view of the public there and could shuffle and squirm in privacy until the pills started to kick in.  At the time of the surgery, I was hitting the nurse’s station two or three times a week.

  During these rigid off periods, when walking, my gait would become a slow and unbalanced shuffle.   During my on periods, I walked pretty normally.  I wondered with some amusement what those workers in other departments, who didn’t know me or my condition, would wonder when I would shuffle past and then, an hour or two later, walk by normally.  “He must be hitting the bottle again”, I imagined them saying to each other. 

 …   November was spent making sure everything healed from the salivary gland surgery, and in December I started testing so the DBS could proceed in January.   I had consults with my neurosurgeon, the extremely likable Dr. R.  He has a great sense of humor and comes across as a regular guy, someone I’d enjoy having a beer with at some neighborhood tavern.  Of course, the guys I usually have a beer with are the last guys I would want operating on my brain.  He is a transplanted New Yorker and an avid sports fan.   The morning of my surgery, he came in my room and visited me, and Sports Center was on the television.  With the impending procedure just a couple of hours away, we briefly talked football and baseball, about the (football) Giants and the Yankees, just like we did the night before when he stopped in my room and checked on me.  I remember thinking, this guy is just like me; we have a lot in common, and on some level found this to be disturbing.  My preconception of a brain surgeon was some genius scientist whose own brain was filled with too much brilliance and eccentricity to have time for such trivial pursuits as sports.  I know the limited capacity of my brain is overflowing with stats and figures and opinions related to batting averages, earned run averages and completion percentages to the degree that I can’t remember to take the garbage out, let alone differentiate between the basal ganglia and the substantia nigra.  The night before the surgery, as he left my room, I suggested that he spend the night in a Holiday Inn Express.  He laughed, which I found disappointing, meaning he was familiar with the television commercials I was referencing.  Truth be told, he’s a good guy, and I felt comfortable and at ease with the idea of him poking around my brain.

  The night before, after Dr R left, I took the last of my allowed dosage of meds at 9:00 and quickly fell asleep.  As usual, my meds wore off after about three hours and I woke up around midnight.  This was the time I’d normally take my nighttime Sinemet tablets, dissolvable and quick acting, and eventually fall back asleep.  However, for the surgery, it was required for my system to be clean of meds, so there would be no nighttime tablets.  I was unable to fall back to sleep and spent a very rough night awake and uncomfortable with nothing to do but watch television and twist and turn in my hospital bed for six and a half hours, and wonder and worry about the next day’s proceedings.   Prior to the salivary gland operation, the only operation I had ever had was minor surgery for a torn meniscus on my right knee.  I remembered that before they put me out, someone took a black sharpie and marked a big “X” on my right knee, so they didn’t operate on the wrong one.  I wondered if, in preparation for to the DBS surgery, they would put a big “X” on the top of my skull, as over the years the precise location of my brain has been an object of frequent speculation, with some convinced it was located somewhere on my backside, and others certain that I did most of my thinking with another, more private part of my anatomy.

 The big day began promptly and on schedule at 6:30 A.M. this morning.  The first step was to have Dr R.’s team of residents admit me and shave the parts of my head that were not already bald in preparation for the surgery (suffice to say at this point in time they were ahead of schedule).   Next was the installation of the metal frame, which I had understood to be like mounting a large vice grip to my head.   They brought the device out and it looked exactly like I expected it to look, and they plopped it on my head, with one of the residents leveling it, and another marking spots in my forehead and in the back of my head to clamp it on.  It is at this point we must pause to reflect on how far modern medicine has advanced, and the many miracles that have been achieved by technological and scientific advances, making most procedures as painless and sensitive to the patient’s experience as possible.   This procedure unfortunately is not to be included in that category, as the device and the technique to install the frame apparently remains unchanged from when first introduced by the either the Marquis de Sade or the grand inquisitor.  It begins with them prepping the areas with a shot of Novocain – and, just like when you go to the dentist, you are left wondering if the shots of Novocain are actually more painful than the resulting procedure would be, as it involved a resident sticking a needle into four points in my skull and shooting the Novocain in.  Then they put the frame back on (which was heavier than I had anticipated) and it was time to clamp the device to the head.  Just like a vice grip, as one resident held the frame in place, another began screwing the clamps in until they were to meet the points where the Novocain had been injected.  It didn’t take me long to realize that these weren’t the type of clamps I used in my workshop when doing wood working projects, what the resident was screwing in were actually spikes that would penetrate skin and skull – I know this because not only could I feel them penetrating my cranium, I could also hear the sound of skin tearing and skull breaking – and as the first one was installed, I hunkered down thinking, only three more to go, by the time they get to the other spots, the Novocain will surely have kicked in more – take comfort in the fact that the brain is capable of these rationalizations, just don’t expect them to be true – each of the four spikes was in fact more painful than the others. 

Then they wheeled me down the hall for one last CAT scan, where they lifted me off of my bed onto another bed that had more metal attached to it.  They positioned my head so that the metal frame latched in with the frame on the other bed (it loudly clicked and locked into place), then wheeled me back to a waiting room, where, with the frame now firmly attached, I was allowed to visit with my wife and the anesthesiologist, who explained to me how they would be putting me out and bringing me back during the day’s events, which would likely last until 3:30 or 4:30 PM  (it was just after 7:00 now).   While I was having these conversations, Dr. R. and his team were looking at results of the CAT scan and a brain MRI that had been taken five days earlier and planning out the procedure, figuring out where to open my head up and install the electrodes that would act as receptors for the neurotransmitters that would be installed later.  Then they were ready and began rolling me to the operating room, asking me to count backwards from 100 or say the alphabet backwards or recite the Gettysburg Address backwards or whatever they asked, I don’t recall, as I was already out. 

Next thing I know I’m awake in the operating room, listening to the static my brain is broadcasting as Dr R. and his guest star neurosurgeon complete the task of installing and testing the electrode and associated leads in the right side of my brain.  This goes on for a couple of hours, and as I sit there awake and the anesthesia gradually wears off, I become aware of the pain in my head, which is becoming more and more unbearable.   At some point I actually start moaning.  “Almost done, bear with us”, Dr. R. promises several times, and when he finally tells me that he is done with the first side and they start putting me under again, I am happier than ever before.  

Then I am awake again.  They are ready to do the other side.  Now I know what I’m in for, and the novelty of being awake while someone is poking around in my brain has worn off.  I’m thinking there is no way I can go through this again.   The pain is there almost from the start.  Fortunately, and to the pleasant surprise of even Dr. R., they are able to very quickly isolate and find the second spot and implement the electrode, and when they put me out for the last time, it’s 1:30 in the afternoon.   I’m about two hours ahead of schedule.

I wake up a couple of hours later in ICU, where my wife is waiting for me.   I proceed to spend a long night in ICU drifting in and out, but by Friday morning I have most of my wits about me.  Aside from the incredible pain in my head, I feel pretty good.  My head is bandaged up so that I look like, as Dr. R. describes, a “human q-tip”.  By Friday afternoon the pain in my head quickly subsides to the point that I stop taking pain medication.  Late Friday I’m moved out of ICU back to my regular room.        

Saturday morning they remove my bandages.  I’m startled by the size of the scars and the number of staples in my head.  By 1:00 I’m free to go, resting comfortably in the front seat of my Prius as my wife navigates the hour and a half trip to our home in Pleasant Praire, Wisconsin.

DBS Part one is complete, and I now have two electrodes implanted in my head.  Two weeks from now, in DBS II, the sequel (“just when you thought it was safe enough to go back in your brain”), they will run the wires under the skin down to a point in my chest, where they will install the neurotransmitter that will eventually send the signals to my brain that will drown out the noise created by Parkinson’s Disease and minimize if not eliminate my symptoms for some period to come.  I am sore, but I am optimistic and eager to reap the benefits of this surrealistic experience.

The PD Kid Is Not Alone


I attended the 4th annual Parkinson’s Symposium, sponsored by Froedtert Hospital, today.  It was held in a Waukesha hotel’s conference center.   As I pulled into the parking lot, I wasn’t sure I was in the right location, until I saw the slow migration of men and women doing the PD shuffle from their parked cars to the hotel entrance.  I knew immediately that I was with “my people”, and it occurred to me, as I entered and waited in the long registration line, that it would be a mean but funny joke to yell “fire” in this crowd.  

I’ve been to a few of these now, and find the speakers to almost always be very interesting, and today’s symposium was no exception.   As interesting as it is to hear the scholarly presentations from dedicated professionals, I find the real value in these things is the opportunity to interact with other patients and learn about their experiences.  Today, at my table, I was, as is often the case, the youngest person (at almost 53 years of age, it may be the last demographic where I am considered a “kid”).  What was different about today’s table is that the two men who sat to my left had both had Deep Brain Stimulation (DBS) surgery.   This gave me a rare opportunity to trade notes with others who have been through this surreal process.  We all agreed that the pre-op process of clamping the metal frame to the head was possibly the worst part, and they were able to corroborate my experience of, as they screwed the spikes into my head that would hold the frame in place, being able to feel and hear the breaking of skull fragments.   Then there’s the part where they install the electrodes in your brain – while you are awake!   We traded memories of this, like old soldiers trading war stories, with one of the guys telling the scary story of how he almost died from the anesthesia administered to him afterwards, and that in the rush to save him (he was clinically dead for two minutes), they accidently dislodged the electrodes they had just put in, resulting in the surgery having to be re-done.  We traded notes on our neuro-transmitters and their operation and maintenance.  We discussed the differences between my one battery and their two battery systems like we were discussing the differences between six and eight cylinder car engines.

While we were out on break, I ran into a face that looked vaguely familiar.  Looking at his name tag, I recognized him as a nuclear engineer I used to work with at the Zion Nuclear Power Plant, more than 15 years ago.   I went up to him and we talked for a while, with him finally confessing that he didn’t remember me.  That was okay, as it has been a long time – we had a nice chat none the less.  He is about the same age as me, and it turns out he was diagnosed a couple of years before I was, and that he too has had the DBS surgery.  He is now teaching engineering at the Milwaukee School of Engineering.  Like me, his handwriting has become completely illegible, and like me, he is dealing with frequent and debilitating periods of daytime fatigue.  He is wrestling with how much longer he can keep working, just like I had been for the past couple of years before finally throwing in the towel in late March of this year.

We talked for a while in the hallway, until the program began again and it was time to return to our tables.  I said it was nice meeting him again and that I wish it were under different circumstances.  We both agreed that things aren’t as bad as they could be and that there are a lot of worse things we could be afflicted with. 

This is one of the things I’ve learned from attending these conferences.  We PD patients are, for the most part, a pretty resilient group.  When we talk, there isn’t a lot of whining or complaining about our fate – there is more the comparing of notes.   Recognizing, for example, that nearly every PD patient I’ve met has experienced to some degree the same issues with sleep disturbances and daytime fatigue, is somehow very reassuring for me.  I think it is because having Parkinson’s is such an intimate experience – the disease is much more than the impaired motor functions that result in tremors or the shuffling walk or the slurred speech – these are, to borrow a phrase from a Chicago symposium I attended last year, just the tip of the iceberg, the part that’s visible above the water’s surface.  Like an iceberg, about 70% of the Parkinson’s experience lies beneath the surface, and is known only to the patient.   This results in one of the worst symptoms of Parkinson’s – the feeling of isolation.   If for no other reason, the symposiums and conferences and support groups are worth attending for the simple knowledge that you are not alone.

So thanks to all the professionals who put together these events and donate so much of their time, talent and knowledge.   Thanks for your passion and commitment to our rag-tag community of the slow and unsteady.

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.