“Raindrops on Roses…”

Posted on August 19, 2011 by

I have a great many things to be thankful for. I have a wonderful wife who is also my best friend, two fantastic children who have turned into remarkable young adults in spite of my mistakes, a broader circle of friends than I ever thought possible, and respected colleagues with whom I have done meaningful and important work. I am a rich man.

But, I must admit that sometimes my baser, more petty nature gets the best of me. Parkinson’s disease has had a wide variety of effects on me, many of which I have described to you in agonizing detail over the last few months. I’ll clue you in on a little secret, though; even though I try to beat it back, having this disease sometimes makes me angry. Sometimes, it makes me so angry that I temporarily forget all of the things that I have to be thankful for.

I know that it’s supposed to be more virtuous to light a candle than to curse the darkness. However, having both a military background and a Texan heritage has firmly convinced me that there is at least some cathartic pleasure in a good cursing session, and if anything deserves a cussing, it’s Parkinson’s disease. So, with no disrespect intended to Julie Andrews in “The Sound of Music,” here are a few of my not-so-favorite things.

1. It makes me angry that the phrase, “I need to use the restroom–I’ll be right back” is no longer part of my vocabulary.

2. It really ticks me off that the best sleep I’ve gotten in the last 6 months is in the car, idling at a stoplight.

3. It  irritates me that the first course in all of my breakfast meals these days consists of a handful of expensive, multicolored pills that make me feel better and worse in equal measure.

4. It REALLY irritates me that I wash down my breakfast pills with something called, “Miralax” mixed into whatever liquid is available in the refrigerator.

5. I am GALACTICALLY irritated that I have grown grateful for this odd breakfast meal.

6.  It tightens my jaws that it takes me as long to get out of the car as it used to take me to dash into the store for a bottle of wine.

7. It perturbs me to no end that I don’t drink wine anymore because it tastes like rubbing alcohol, and that I don’t drink beer anymore because it tastes like wet newspaper.

8. It makes me both angry and sheepishly embarrassed that, on the rare occasions when I do have a drink, it’s usually some multicolored concoction with fruit spilling out of the top of it and a long tropical name, because it seems that I taste fruit flavors better than anything else. It just makes you feel somehow less tough to tell the bartender, “I’ll have a triple mango piña colada mai tai with extra banana rum and a splash of blue curaçao” than to walk into a bar, spurs jingling, and say, “Scotch. Single malt. One ice cube.”

9. I would never go so far as to actually get angry at them, but it does feel like a violation of the laws of nature for elderly women to hold doors open for me.

10. It does, however, make me angry that I have begun to expect elderly women to hold doors open for me.

11. It irritates me that my wife is suspicious of my judgment; it really irritates me that she is beginning to have reason to be.

12. It upsets me that people make such a big deal out of a simple little thing like accidentally stepping through the sheet rock in the bedroom ceiling when I’m working in the attic pulling Ethernet cable.  Alone. In 130° heat. All day.

13. When I realize that those people have every reason to make a big deal out of it, and that I’m going to need to start thinking harder about what I do and when I do it, even for things I’ve done my entire life–now, that really upsets me.

14. It makes me angry that the money that I used to spend on scuba equipment I now spend on co-payments for doctors. A whole lot of doctors.

15. When my brother asks me if I would like a cork for my fork so I don’t stab myself in the eye, I don’t get angry. I just think of ways to get even.

16. I become righteously indignant when my wife tells me to swing my arm when I walk. I become less righteously indignant when I realize that I’m actually not swinging my arm, and that it is curled up on my chest.

17.  It makes me deeply angry that the medical community in the US spends more on the development of drugs to improve bedroom performance than on research to find a cure for Parkinson’s disease.

18.  It’s revolting to me that our politicians think that political infighting and reelection campaigning is more important than funding for a national registry for neurological diseases, which could help us determine the origins and causes of Parkinson’s disease.

19. I’m grateful that research is going on somewhere. However, it upsets me that some of the best research into cures for Parkinson’s disease is taking place overseas because of funding limitations here, even though I have personally met some of the most intelligent, committed, and capable scientists and medical professionals that exist anywhere in the world right here in the US.

20.  I am absolutely incensed at the suffering, pain, lost capability, and degradation in quality of life that Parkinson’s disease inflicts on good people. I hate this disease, and I want to see it disappear from the face of the planet.

On the other hand, I do have 14 helicopters. Things could be worse.

POSTSCRIPT:  Some of the above rant is slightly exaggerated for effect.  I’ll leave it as an exercise for the interested reader to determine which parts (hint – I actually LIKE pina coladas.  Don’t tell anyone).

©2011, Corey D. King

Posted in Observations | 5 Comments

I Think, Therefore I…What Was I Saying?

Posted on August 9, 2011 by

This has been quite an eventful last few weeks. I hardly know where to start; I suppose chronological order works as well as anything else.  So, here we go…

I’ve had several programming sessions since that initial session back in July.  In general, things are going great with this new electronic gadget.  However, although I’ve been instructed in strong terms not to play with it, I feel it’s only prudent to understand how it works, and to know how to turn it on and turn it off when I need to. Not everyone agrees; and unfortunately I’ve recently shown good evidence that, instead of applying my typical “arrogance with electronic devices” approach, perhaps I should Read The FULL Manual before I begin claiming that there’s been an inexplicable 25% drop in voltage level in my stimulator battery, and begin hauling medical device representatives, neurosurgeons and neurologists, and people off the street into a room to discuss what’s wrong with the darned thing.  When, oh when will I ever learn to listen to my wife?

“It’s probably just the batteries in the programmer, don’t you think?”

I didn’t think–that was my problem.  My second problem was that I didn’t listen to my wife, who was thinking.

“Naaaah, can’t be.  I remember clearly that someone at some point said something about a percentage level, related to something that I don’t remember but that I’m convinced has to do with the stimulator battery.  That makes sense, doesn’t it?”

No, it didn’t.  So now, I’m under strict injunction to think about topics other than my stimulator, and to give the whole “Electro Boy” thing a rest.  What’s the fun of having a new electronic device that’s actually inside my body if I can’t have a little fun with it now and then? Perhaps I have the wrong attitude about this whole situation. And what’s more, now I have credibility to rebuild. It’s all so unfair. I suppose I’ll go play with my helicopters.

Which brings me to a slightly more serious subject , although at the outset, it doesn’t seem all that serious. These things never do, I’m beginning to see. Over the course of the last 18 months or so (not coincidentally, about the same time I began taking a Parkinson’s medication of a type called a “dopamine agonist”), I’ve developed an interest in model helicopters. They’re fascinating–they have little tiny parts, you can break them and put them back together endlessly, and when you get good enough you can actually fly them around the room and chase the cat with them.  For someone with both an aeronautical and mechanical set of interests, they are almost perfect.

You’d think that one or two would be enough to satisfy nearly anyone.  Not so, particularly someone with compulsive tendencies created by a dopamine agonist. It’s been slow and insidious, like many things associated with Parkinson’s disease, but over the course of the last year I’ve developed quite a fleet of model helicopters. At last count I have 14 of them. In the clear light of retrospection, even I can see that’s a little bizarre. It’s not at all unusual behavior for someone with PD taking a dopamine agonist, however. As matter of fact it’s somewhat benign given the possible spectrum of behaviors.

Compulsive behaviors brought out by dopamine agonists can include compulsive gambling, hypersexual behavior, compulsive shopping (for helicopters, for instance, or home electronics, or home automation equipment, or Fudgesicles, just to name a few random possibilities),  or an obsessive focus on almost any activity or object.  The compulsions are brought out by the medication, but the behaviors are real and can cause upheaval, relationship damage, and financial ruin for people who are not wary.  Like many of the physical symptoms that for years I was able to explain away as something else, I have been able to justify my focus on these new hobbies of mine as a healthy way to replace things that I’ve lost–scuba diving, sports, running, skiing, and most other physical activities. After all, everybody needs a hobby, right?

My compulsive behaviors have been relatively easy to control, and the impacts have been minor so far (although I do have a few pounds to lose from all those Fudgesicles).  The realization that I was behaving compulsively, however, has opened a new set of discussions and possibilities to consider. These are among the hardest subjects to discuss about Parkinson’s disease, but they are a real part of the syndrome and need to be discussed.

In addition to the motor and autonomic nervous system symptoms associated with PD, there is a spectrum of potential cognitive impacts as well. They can range from minor short-term memory disruption to severe dementia almost as profound as Alzheimer’s disease in some cases.  According to the medical literature, nearly every Parkinson’s patient experiences some cognitive issues, even if they are mild and not significantly more noticeable than just the usual effects of aging.

My family and friends have begun to notice in me signs of what is known as “executive dysfunction.” Although that sounds like a bad quote from a Dilbert cartoon, it’s related to the ability to multitask, to think abstractly, to remember and apply facts, and to interpret motivations and read situations effectively.  Executive function is a metacognitive process – a cognitive process that helps you to use other cognitive processes. Executive dysfunction can result in short-term memory loss, impulsivity, difficulty in switching thought processes from one situation to another, and difficulty in developing concrete plans based on abstract thought.  Executive function is what I’ve done for a living for most of the last 28 years.

My DBS system is helping to make my motor symptoms much more manageable, and my new exercise program coupled with physical therapy is helping me to move more easily. My various autonomic nervous system malfunctions can be managed by a combination of lifestyle changes, medications, and simple tolerance. However, the cognitive and metacognitive issues associated with PD can be more difficult to manage.

So last month, after 28 years of a deeply satisfying and varied career as a military officer, an executive in public, private and start-up companies, and a leader and manager in the nonprofit research and development world, my wife and I decided that it’s time for me to focus on staying as well as I can for as long as I can. I began disability leave from work yesterday, and given the nature of this disease, I don’t anticipate returning to my professional career. It was the hardest decision of many hard decisions we’ve made over the last 2 years, but I think it’s the right one.

The changes in me are slight, and probably would not even be noticed by anyone who doesn’t know me well. They, like the other symptoms of PD, are easy to explain away or to blame on the natural course of aging.  The things my wife in particular has seen only she would be able to recognize, because no one knows me as well as she does, warts and all.

Everyone approaching middle-age begins to have memory problems; the stories that I tell about myself are familiar to many of my contemporaries. Misplacing keys, forgetting what you’re going to say, walking into a room and not remembering why you are there; all of these occurrences are familiar to people of a certain age. But, in the 26 years that I’ve been married I have never lost my wallet.  In the last 2 months, I’ve lost it twice–the last time with “extreme prejudice.”  By itself, it’s an inconsequential event. But, when coupled with other inconsequential events that are fundamentally out of character for me, a pattern begins to develop. In addition, I FEEL different. I can tell that there’s something going on that is completely uncharacteristic of me. It is slow, and hard to notice–yesterday is not significantly different from today. But last week is slightlydifferent from this week, last month is noticeably different from this month, and last year IS significantly different from this year. I can deny it or I can acknowledge it, fight it where I can, and live with it where I can’t fight it.  I’ve had enough of denial–I’ll take the second path.

You can find an excellent description of executive function at:

http://en.wikipedia.org/wiki/Executive_functions

© 2011, Corey D. King

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A New Direction On The Path

Posted on July 24, 2011 by

Last Friday was turn-on day for my DBS system, and so far it’s been a combination of “rather remarkable” and “no big deal.”  As I had been repeatedly told by the doctor, the Medtronic rep, and the doc’s very supportive and capable assistant, there has been no “flipping a switch” change in the symptoms, and frankly right now I don’t feel all that different than I did before.  As with other elements of my treatment for this disease, the neurologist is planning to take a slow, careful approach to turning on the stimulator, which essentially means that I’ll be “titrating up” in electricity just like I have in the past for new drugs.  I suppose that neurology, like long-term investing, shouldn’t be exciting – it’s the eventual results that matter, not the thrill and rush of getting there.  Still, I was a little disappointed that there was no “oh-my-gosh-i-can-run-jump-and-play-look-at-my-hands-move” moment.  I’ve found that you don’t really need an excuse to drink champagne, though – they sell it everywhere.

The actual programming session didn’t take long at all, although I had to stay at the neurologist’s office for about two hours after it was done (presumably to see if I would suddenly start picking up radio stations or opening garage doors with my head).  The neurologist began by explaining that he would first test the electrical integrity of the leads, and then he would adjust the parameters (as far as I can tell, they include amplitude, pulse repetition frequency, and pulse width in a baseband sinusoidal wave) to determine how I responded.  He was clear that I would leave this first session with the device set at a low level and probably without noticeable effects, and that I would come back in two weeks to have the system tweaked again.

With my expectations properly set (and steam rising from the campfire), he began.  I couldn’t see the screen of his handheld programming device, so I didn’t know what was going to HOLY CRAP, WHAT WAS THAT?  I felt a buzzing twitch run down my right arm, and the fingers of my right hand momentarily went into business for themselves.  It shut off as abruptly as it started, and I said, “that was strange.”

“Yes – that means that the electrode on the left side of your brain is working.” For reasons that are not clear to me, the left side of the brain controls motor activity on the right side of the body and vice versa.  I started to comment on that fact, when my left hand and arm began to twitch and tingle, and my hand became more rigid and immobile than usual.  It also was returned to my conscious control quickly, and I had a fleeting thought about the Control Voice at the beginning of the old “Outer Limits” TV show from the early 60′s – “There is nothing wrong with your brain.  Do not attempt to control your own body.  We will control the horizontal, we will control the vertical.    We can make you twitch and shake, and if you upset us we will make you slap yourself repeatedly.”

Things were quiet for a few moments, as the neurologist and the medical device expert discussed next steps in low tones.  I was anxiously waiting for the next lightning bolt in some part of my body, but all I felt was a few minor tickles and buzzes here and there.  I began to relax (always a mistake), and as I tried to settle into the chair and get comfortable, I found that I couldn’t.  There was no pain or real discomfort, but I couldn’t stay still.

“Well, THIS is weird,” I said.  My wife, who was recording the session, said, “what’s happening?”

“I can’t sit still,” I said.

“Are you just trying to get comfortable?”

“No,” I replied. “I think I’m trying to dig a hole in the chair.”

The neurologist had adjusted the voltage level of the stimulator on my right brain side/left body side to 1 volt, and it caused an immediate and uncontrollable bout of dyskinesia; again, not painful, just strange.  He adjusted the voltage down to a lower level of 0.6 volts, and the dyskinesia evaporated like rain on a Texas street.

Video of my DBS-induced dyskinesia

It’s common to experience side effects like dyskinesia or temporary worsening of symptoms during the tuning process – my brain will have to become accustomed to the small trickle of electric current that the stimulator provides just as my body initially had to get used to the Parkinson’s medications.  The difference is in the level and type of ongoing side-effects – I have a hope and a reasonable expectation that, when I do become accustomed to an electrified existence, that I’ll get benefits with a much lower level of side effects.  That’s why I’m doing this, after all, and my initial experience with DBS stimulation reinforced that hope.  The electrodes are placed in exactly the right spot, and this initial foray into stimulation shows that it has an effect on the movement characteristics that are associated with the disease.  I remain optimistic about the next few programming sessions and the longer-term future, and I’m glad I did this.

Hope is a funny thing – sometimes you have it without knowing it, and just a little extra information changes the picture.  In my post following the surgery, I talked about the neurosurgeon’s satisfaction with the electrode placement, and his comments about how the “signals were great.”  I’ve since learned that those signals come from something called “microelectrode recording” or MER.  During the implantation, the neurosurgeon first implants a thin recording probe, and measures the electrical activity along the path of the electrode as it approaches the subthalamic nucleus.  Although they record the signals as electrical impulses, they actually listen to the sound of the signal in the operating room over a speaker.  This helps the surgical team to determine if the implantation is proceeding according to plan, and to decide when they’ve reached the target.  Each region of the brain has a distinctive sound – hissing, popping, crackling or rumbling sounds that indicate the level and type of electrical activity.

Here are some example sounds from SoundCloud of various parts of the brain:

Thalamus

Cortex

Subthalamic Nucleus

I found that the neurosurgeon’s comment that the “signals were great” indicated two things – that the difference in sound between my STN and my cortex, midbrain, and other structures indicated they were in just the right spot.  But beyond that, the sound that the electrical signals from my STN make indicate that there is no question but that I have Parkinson’s disease.

You’d think that would be no surprise to me, but I had been holding out some minor hope that I fell into the 15% – 25% of Parkinson’s patents who are misdiagnosed.  Diagnosis by neurological exam, medical history, and ruling things out still leaves room for uncertainty, and in a small number of cases, post-mortem testing shows that a person treated for Parkinson’s for years never actually had the disease.  In a hidden place inside me, I was still hoping that I would one day wake up without symptoms, and find that this had all just been a colossal misunderstanding.  Even after experiencing classic PD symptoms for years, being diagnosed by 5 of the best medical professionals in the US, and showing improvement in symptoms after taking levodopa.

I still have hope – for an eventual cure, for a productive, happy, and long remainder to my life with people who I love, for a manageable progression to this disease, and that DBS will prove to be effective for me.  I finally have to put away the unreasonable hope that I don’t really have this disease, though.

Posted in Observations | 2 Comments

Turn-on Day

Posted on July 22, 2011 by

Today is turn-on day for my DBS system.  I’m hopeful and optimistic that I’ll see benefit the first time, but sometimes it takes a while to get the parameters right – I may have to cultivate patience.

I’ll write more tonight and let you know how the transition from “better living through chemistry” to “riding the lightning” goes.  If you smell smoke, bring a fire extinguisher.

© 2011, Corey D. King

Posted in Observations | 2 Comments

When A Cane Is Not A Cane

Posted on July 16, 2011 by

It’s now been more than 6 weeks since my deep brain stimulator implantation.  The incisions are mostly healed, the hair is well on its way to growing back in (in true chinchilla fashion), and I’m starting to remember that this new lump in my upper chest doesn’t like to be banged into things.  In short, things are beginning to normalize and stabilize.  Clearly, that’s a cue for another major change to take place, so I have one scheduled next week, just to keep things interesting.  I’m having the device turned on and programmed and I’ll be able to get some initial indications about how well DBS will work for me.

The lesioning effect is entirely gone now, but the fact that it caused such a significant positive impact for a couple of weeks bodes well for the future.  I’m actually looking forward to the programming sessions, and I have hope for an eventual reduction in the amount of Parkinson’s medications I’m taking.  That doesn’t always happen, but that’s the plan.  I’ve already reduced the amount of Requip XL I’m taking and I’ve eliminated amantadine altogether, and the hallucinations have reduced somewhat at the expense of more dyskinesia and tremor.  The nights are a little more lonely now without all the squirrels, cats, and phantom people moving around just out of direct sight, but I’m sure I’ll make new friends.  I might even try sleeping.

I have been an outspoken advocate of exercise as a weapon in the battle against PD, but since the surgery, it’s really been brought home to me how truly important it is.  When the lesioning effect was at its peak, I decided to stop using the cane I had grown to rely on, and I began to walk for what seemed like several hundred miles every day in somewhat of an unusual location – the hospital where my DBS surgery was performed.  I tried walking in my neighborhood (I live in south Texas – potentially heatstroke-inducing behavior if the walk starts after the sun rises), and I tried the mall. (No. Just no. If I have to explain why, you’ve never been in a mall.)  The hospital is huge, has more corridors than you can walk in a month, and has even more stairs.  There’s also the added benefit that no one gives a second glance to the bald guy with hundreds of staples in his head walking up and down with a beautiful but slightly intense woman behind him screaming, “swing your arm, lift your knees, doggone it!”  It’s been perfect, and I now love climbing stairs.  I swear.

As an additional benefit, I’ve had plenty of time while walking to think and talk with my wife about solutions to all the world’s problems.  I sense a forthcoming book, but we’ll have to spread it out.  It’s just bad form to win too many Nobel prizes at once.

One of our topics of conversation was my cane.  I was eager to give it up, but I found that it was harder than I expected, and I spent some time examining why.   There were the obvious reasons – stability during balance disruptions, help getting in and out of my car (difficult for anyone – I haven’t given up my sports car yet), and added confidence getting up and down stairs.  All completely reasonable physical needs, but not the only reasons the cane was hard to give up, as it turned out.

The physical symptoms of PD can change and worsen over the course of just a few hours, and can ease and improve just as quickly.  As I’ve mentioned before, it’s sometimes uncomfortable for me to have someone tell me how good I look or how well I’m doing.  I know that 99% of the time, those comments are honest, well-meaning, and rooted in kindness and truth.  However, I have an unreasonable discomfort with the remaining 1%, when I can sense an undertone of something else – perhaps an unstated question about how serious this whole thing is anyway, or a level of skepticism about why I’m making such a big deal out of this disease, or a bit of irritation about why I have handicapped license plates on my sports car.   I discovered, to my surprise, that I carried and used the cane in part as a kind of explanation, and even an excuse.  Why does he limp?  Oh,  he has a cane – must be explainable.  Why does he fumble with his wallet in the checkout line, drop his change, and take so long? Oh, he has a cane – he’s probably sick or injured, and not drunk or just clumsy.  Why is that young guy parked in the handicapped zone?  He looks fine – oh, wait, he has a cane.  Never mind.

For me, the cane has been not only a physical aid to movement, but also a mechanism for answering questions before they were asked, and a way of opening up conversations about PD on MY terms.  It’s a defense mechanism in the most classic sense, and it’s indicated to me that I’m probably not as far along on Dr. Kubler-Ross’s 5-stage process as I thought.  Current thinking about that grieving process is that its not sequential, and may not even be scientifically defensible.  The stages of grieving she described ring true to me, though, and I am probably spending more time in the denial, bargaining, and anger stages than I thought.

There are deeper, more personal reasons why the nature of this disease is difficult for me to bear, and perhaps I’ll discuss those at some point.   In the mean time, I’ve resolved to try to let go of the cane, and trust that the DBS system will do what it’s intended to do – reduce the severity of some of my motor symptoms.  I’ve also resolved to let go of the 1%, and be grateful when I hear, “you really are looking great – I’m glad you’re improving.”  I’ll work on taking it as a compliment and not a challenge, and savor it while I can.

I was fortunate to see a series of webcasts from the Midwest Parkinson’s Conference last month.  One of the speakers, David Zid, described an exercise program that he and a colleague designed to help delay the impacts of PD.  I tried some of his techniques with my wife, and the results have been extraordinary.  You can find some of his videos on YouTube and on the AAPSG website at http://aapsg.org.  I’d encourage you to take a look and evaluate for yourself.  I have two PVC pipes I’ll let you borrow :-) .

 David Zid, “Delay the Disease”

I’ve also begun a new course of physical therapy, and I’m optimistic that will help also.  There are many good places in San Antonio that provide those services – I’m working with Access Quality Therapy Services.  They specialize in movement disorders, especially Parkinson’s, and although I’ve only had one session with them so far, I’ve been very pleased.  No one yells “swing your arm; get that hand out of your pocket; don’t MAKE me kick your butt,” like my wife, though.  The denial is definitely over.

Corey Walks in Quebec City

ⓒ 2011 Corey D. King

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…And Out The Other Side

Posted on June 14, 2011 by

It’s now been five days since my deep brain stimulator implantation, and some of the fanfare has died down. I had a wonderful outpouring of support from family and friends, and my voicemail, my mailbox, my house, and the hospital waiting room were full leading up to and after the surgery. Now that everyone has gone back home and it’s me and my wife again, I have had some time to think about what this whole process has meant to me and what it could mean for the future. But before that, let me tell you a little bit about what DBS was actually like for me.

I had an early call at the hospital on Thursday morning; the neurosurgeon had asked us to be there no later than 5 AM. He, of course, was arriving somewhat later, but then he’s the one with the medical degree. Making an appointment at 5 AM is much less of a problem for me than it used to be, because I generally see 5 AM from the backside and not the front side. This was true on Thursday as well–another sleepless night, but not with apprehension or anxiety (they typically are not that way, anyway). Just another long night of Parkinson’s insomnia, with a touch of anticipation. Although the likelihood of severe complications for this procedureare very low, I had to assume the worst; so, I had said the things that need to be said, done everything I could think of to do, and was somewhat at peace.

And then I fell asleep. Parkinson’s is like that–just when you think you have it figured out, it throws a backflip and surprises you from behind the door (kind of like my daughter’s cat Clovis.  Another story, another time).  So, after 18 months of incessant insomnia, I was running late for my DBS surgery because I overslept. My wife saved me from myself, and I got up to take another shower with a wonderful product called Hibiclens. This was the second of my Hibiclens showers, designed to make me less of a threat to myself from infection than I usually am. The primary complication for DBS implantation surgery is infection, and my neurosurgeon was taking great pains to avoid that complication.  In general, he had thought through every possible screwup, unforeseen circumstance, and snafu.  If anyone would like a nomination for Neurosurgeon of the Century, I’ve got one.

After my leisurely five-minute Lysol–Pine-Sol–napalm shower, I threw on some clothes that I thought would be easy to get out of and jumped in the car. We arrived uneventfully at the hospital right at the stroke of 5 for an abbreviated trip through the admissions office. I highly recommend pre-admission; much nicer to do paperwork at 3:30 in the afternoon than 5 in the morning.  In rapid sequence we worked our way through surgical admission and then to a holding room for some final medical history and drug interaction discussions. Here it became very clear to me that you can never just give yourself over to the system. After someone had relieved me of yet another vial of blood, I spoke with a nurse about drug allergies and drug interactions. Those of us with Parkinson’s disease have to be very careful of drug interactions, because some of the interactions can be potentially fatal, such as the interaction between Demerol and Azilect.  I had a very difficult time helping the nurse to understand that I wasn’t just allergic to Demerol, but that if they gave it to me it would probably kill me. Not that they INTENDED to give me Demerol, of course; however, the longer I talked with her, the more I became certain that as soon as my back was turned they would be stabbing me with a needle full of the stuff.  We finally came to an accommodation, with her telling me that they wouldn’t give me any Demerol because “Azilect has Demerol in it,  and you’re taking Azilect.” Good enough, I thought to myself. I’ll just let this one go and take the risk. My wife calls me “pedantic;” I think it’s just prudence.

Waiting...

We made our way into the surgical prep area about 5:45, where they started my IV, with promises of wondrous treats to come with names I didn’t recognize. The surgical nurse told me, “just think of it as a couple of margaritas.”  That I could understand.  They moved me to a sheltered corner of the surgical prep area, where the first big event of the day would take place – The Shaving.  You wouldn’t think it was such a big deal, but it’s kind of a landmark event for someone who’s had a full head of hair for his entire childhood and adult life. I had no idea what they would uncover.  A (formerly) good friend of mine told my wife, “if you see the number 666 emerging from the hair, try to pretend that it says 999.” A Biblical scholar and a comedian to boot.


I think I’ve noted an interesting phenomenon; when someone gets their head shaved in the hospital, EVERYBODY shows up. My wife, my daughter, the neurosurgeon’s entire surgical team, the medical device rep (who is a friend and colleague), the nursing staff, the orderlies, and some guy named Bob all were standing around watching as I got my head shaved.  And to answer a question that I’d had for some time–the neurosurgeon did the shaving. Apparently it’s all just part of the procedure.

The Shaving went uneventfully for the most part, with lots of laughing and joking and comments about the emerging smoothness of my skull. The only comment that really stands out came from the neurosurgeon,  who apparently moonlights as a standup comedian.   “I’ve never seen anybody with hair this thick,” he said. “You’ve got hair like a chinchilla.”  

Probably not the first time he has said that, but definitely the first time it’s been said to me.

The FrameI didn’t get much time to enjoy my new smoothness. Very soon after The Shaving was done my wife and daughter were escorted off to the waiting room, and the serious work began. The next major step was installation of the stereotactic frame, which involved local anesthetic, large chunks of machined metal, and some of the biggest screws that I’ve ever had screwed into my head.  By this time the “margarita” drugs had started to flow, so my reaction to the process was something like, “OWW!! That hurt…..wha?  Hmmm.”  They got the contraption firmly anchored to my skull, and then begin wheeling me down the corridor towards the operating theater. I vaguely remember as we were rolling that the anesthesiologist kept having to tell me, “you don’t have to hold your head up off the gurney.  Just relax.” Yeah, right.  Relax.  

We got to the operating theater, and things got a little fuzzier. I was actually awake for most of the procedure–from the local anesthetic in my scalp, to the installation of the rest of the stereotactic system (the neurologist told me, “Sorry this is mashing your nose a little.” I think I remember saying, “No biggie; I’m not using it for anything right now anyway”), to the distinctive sound of the surgical drill drilling quarter-sized holes in the top of my skull, I remember it all.  I remember knowing that they had started to implant electrodes in my brain, and being astounded that, by gosh, they were right – it didn’t hurt at all!  With the benefit of modern pharmaceuticals, I was supremely unconcerned by the whole thing.

I was also reportedly “pretty chatty” during the first part of the procedure so, perhaps in part to shut me up, they put me to sleep to implant the stimulator in my chest. The overall procedure was somewhat shorter than usual because, according to the neurosurgeon, the electrode placement and the data that they gathered were “just fantastic” and they didn’t need to go through the neurological testing process that they usually need to to verify placement of the electrodes. That’s one of my strongest memories of the whole procedure–the neurosurgeon muttering to himself, “fantastic, just outstanding, this is wonderful, superb…” Not a bad memory.

I woke up in the recovery room after what seemed like only minutes with the recovery nurse leaning over me saying, “well,  I see you’re back.”  It was only short time later that my wife came into the recovery room and we were able to sit for a while before they asked her to leave (which pleased her not at all).  I spent quite a long time in recovery (short staffing more than anything else).  My only recreation was being repeatedly reminded to breathe.  The  anesthesia they used depresses respiration, so the nurse kept having to tell me, “Corey, breathe deeper.  Corey, you’re not breathing. You need to breathe, Corey.”  I kept thinking, “Can’t you leave me alone? I’m trying to sleep here.”

After I left recovery, I headed to the neurological progressive care unit, where I stayed for about 36 hours.  My family and  friends dropped in to wish me well or to make fun of my new look (sometimes both) or to go on walks with me around the corridors.  I left the hospital on Friday, just a day and a half after major brain surgery (and what brain surgery isn’t major?).  I could make comments about advances in modern medicine, but I think it’s more likely that the insurance companies are driving short hospital stays for major medical procedures. No complaints; I was ready to come home.

Since being home, I’ve noticed some effects, both positive and negative, from the procedure. On the positive side, I’ve seen evidence of  “the lesioning effect.”  Implantation of electrodes causes some minor damage to the area around the subthalamic nucleus that can have beneficial effects. It fades over time, but for the last two days, even considering that I have not reduced medication, I’ve been able to do the neurological testing “finger taps” with my left hand like I have not been able to for the past two years.  Whether it’s accurate or not, it gives me hope for the eventual success of the stimulation therapy. The system is not turned on yet; that won’t happen for several more weeks. I’m very optimistic about what happens then, though.

On the negative side, I have to admit to some cognitive impacts.  There are those who say that I’m always confused; however, even I notice it now.  I think more slowly, it’s more difficult for me to start and finish things, and I fall asleep with no provocation at all. It’s transient and probably wont last more than a few days. Maybe I’m just recovering from 18 months worth of insomnia. Perhaps I’ll try something new and not overthink it.
In the longer term, I believe strongly that what having this surgery has done is to create time.  It’s made time for the biomedical research community to find a cure that can help me and others like me, and even if that doesn’t happen, it’s given me time to live a fuller, more productive life with the people that I love, doing the things that are meaningful to me for as long as I can.  I’m grateful for that time, and I don’t intend to waste it.

This is only the first step in a long process, one that many have been through before me.  I’ll continue to tell you what it looks like from here for as long as you’re willing to listen.
© 2011 Corey D. King
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Still Here, Still Me

Posted on June 10, 2011 by

I’m back on the air, and the two main concerns I had with the procedure are no longer concerns. Thank you all for the flood of supporting emails, Facebook posts, and voicemail – that’s as helpful as anything the doctors and nurses are doing for me.

The procedure itself went like clockwork yesterday, beginning with “the shaving” and ending with implantation of the stimulator system and zipping me back up in various locations. According to the neurosurgeon, the implantation process went so well they didn’t need to do additional testing and validation that they normally do. Once again I’m lucky in a lot of ways.

I’m falling asleep about every 10 minutes, but I feel great. More later.

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