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.

 

Trump As a role model For PD patients

Now for something completely different. What we can learn from Donald Trump as a way of dealing with PD.

  1. First, the ability to completely ignore and disconnect to anything relating to fact. This would be helpful as who wants to hear that PD is a progressive neurological condition that as of yet has no cure.
  2. An absolute belief that what your doing is correct with no “data” to back it up. Yep that herbal pill I just took is going to cure my PD.
  3. The ability to deny, with conviction, that what happened, really did not happen. No doc my hand didn’t tremble, really, it didn’t.

A conversation between Trump and his neurologist:

Trump: “So doc, my hand has been shaking and I can’t figure out why?”

Neuro: “Well Mr. Trump we’ll have to run some more tests…”

Trump: “Wow, did you see that hot nurse? What do you think? You’d do her! Come on you know you’d hit that!”

Neuro: “Mr Trump, concerning your symptoms..”

Trump: “Wait, she would really dig my hand tremor! What do you think? Her tits are great”

Neuro: “I would like to consult with Dr. Cindy Hampton, a movement disorder specialist..”

Trump: “A woman! Is she hot? I didn’t know they let women into medical school! She must be ugly and fat!”

Neuro: “She is one of the top in her field..”

Trump: “I am the best real estate developer in the world! Built beautiful golf courses, gorgeous casinos. No I am not going to see a woman”

Neuro: “Well, how do you want to proceed, as she…”

Trump: “I am smart! Brilliant! Built the best real estate in the world,. I can cure this. Your an idiot. Everyone tells me I should be a doctor. I am the most qualified of anyone in medicine. You neurologist always stick together, we need something new”

Neuro: “Well, if that is how you feel, I can’t help you. Please see the receptionist on your way out for billing…”

Trump: “I am not paying for this, are you kidding! Did you just see that hot nurse…”

Hope you enjoyed. Also, my connection to Facebook was broken, so if you haven’t seen any of the recent posts, check them out.

Mike

This Is Yoga???

So where does one begin a spiritual/healing  journey? What “system” or “ideology” should I explore? Faith healing where I tempt fate whilst dancing with cobras? Bite the heads off chickens and read the blood stains on the wall? Shamanistic rituals snorting green goo on a vision quest? Or go all Timothy Leary and just drop a tab of acid to reach an altered state and try and figure it out?

While these might work for some and each approach might have its proponents, they are not for me. Any path that I follow must speak to me (obviously) and may include elements stemming from different systems. The placebo effect is real for a reason, the power of belief an uncharted ocean. Sometimes things work and we don’t know why. My disease is a testament to this. I take a flu drug daily that, for a yet unknown explanation, helps reduce the dyskinesia associated with taking dopamine. There is a biological process at work that cannot be explained. Why then can’t an ideology or belief system have the same effect? Just because we can’t explain it doesn’t mean it isn’t effective or that we can’t use it. So the million dollar question is what speaks  me?

I have decided that some of these Eastern philosophies might have gotten something right. It is not just that they have been around for centuries, but what they say makes sense. Not that I am ready to declare bouncing yoga masters levitating. But western medicine has just recently, in my lifetime, started to address the damage that stress can cause to the body and mind. Something that eastern systems, what I will call ES, have been addressing all along. The difference between the two is that the ES has about a 1000 year head start on how to bring the connection between mind and body into harmony. Thus I go forth and start my path trying to understand the concept of chakras and energy meridians within the body. My journey will include both yoga and meditation to help open up and connect with these energy fields. Both of these are learned practices that will require time and experience. I hope and expect that practicing these modalities will have a profound effect not only on my disease, but also with my interactions and connections with the world around me. I am not declaring ES to be a panacea for all ills, as even monks get sick, but I believe it will put me in a better state of mind to deal with all the challenges that life brings. I will try to chronicle it’s impact on my life and disease so that others may benefit from my discoveries or disappointments. Much as I was a human experiment by volunteering for the clinical trial (please see earlier posts), I offer up my soul for humankind (or at least other Parkinson’s sufferers).

Mike

 

 

There Must be More

Been awhile..The more things change the more they stay the same. Keep thinking about a college biology class on evolution where they postulated that fish evolved legs and lungs so they could get from pond to pond. In an attempt to maintain life in the water they evolved into something more. Where are my legs and lungs? In an ever changing attempt to keep my body moving, I take more or different meds, but my brain isn’t evolving. Shouldn’t the wonderful and mysterious brain take steps to “fix” what is lacking? Why can’t I evolve? I keep hearing and reading about the plasticity of the human body, but I guess there are just some things we can’t physiologically transcend. Something is broke and science cannot yet fix the problem. Which leads me to contemplate the concept of the human spirit.

Now I come from an ardently atheist family and background where science and rationalism is king. Never gave religion or the concept of the human spirit or consciousness much thought. “Religion is the opiate of the masses.” Karl Marks. The idea of putting ones live in the hands of an omnipotent being where ones destiny and path is predetermined never really appealed to me. It took away the responsibility that I could make changes and decisions that could affect my life in a way that was not predestined. I don’t want to get into a whole treatise here, but in short what should be a personal decision has been co-opted and politicized by the religious establishment (for centuries). If I believe in a god, why should I be told how that relationship should be structured. From an anthropological perspective religion was an important social construct as it gave ritual and mores that informed how humans interacted and processed there relationships with each other and the world around them. Now it is used to blow each other up. Whether there is a god or not, an afterlife, a heaven, I cannot say. But what I do know is that there is a fundamental human need to feel like we are part of something bigger than ourselves (or at least I do). There must be something more…

Thus I turn to the human spirit. I cannot and will not endure the suffering of my disease without a purpose. That purpose is to change physiologically what medicine cannot through the belief that the human spirit can transcend the biological destiny of my condition. I am going to evolve! I refuse to stagnate. I do not know how to do it, but neither did the fish billions of years ago. Stay tuned….

 

 

Recovery

Well the surgery took 11 hours. Someone told me, and I don’t know if it is true or not, that for every hour of anesthesia it will take a month to recover. All I know is that I woke up with a catheter in my you know what. If you don’t know what it is let me explain. They thread a rubber hose up your urethra and inflate a small balloon in your bladder so it doesn’t come out and allows you to constantly get rid of your pee. Fortunately, I was knocked out when they put it in, but there it was when I woke up. It wasn’t painful, just odd. The nurse told me that some people have actually ripped them out with the balloon still inflated! Can’t even fathom what that might feel like.

I also had been off meds for quite a while, and as I mentioned in an earlier post, I get really rigid and miserable. So I asked the nurse if I could get my meds, to which he said, your not scheduled to take them yet. Apparently, my medicine regime had been entered incorrectly. It is funny, but getting meds out of the pharmacy is akin to getting gold out of Fort Knox! I mean they gave me morphine but god forbid they give me a Sinemet. Well that didn’t sit well with me. I had staples in my head (2 holes covered by plastic caps), a catheter in my penis, and IV’s in my arms. I explained that he better get my fucking meds or I would get up and get them myself. I was not the ideal patient at that point. Eventually things go sorted out and I was able to relax (probably slipped me more morphine). You won’t believe it, but if everything looked ok, I could be released after only one night in the hospital. I was all for that as the guy next to me had also had brain surgery but his was to remove melanoma that had spread to the brain. He was not having a good time of it as one can imagine. I managed to pass all the discharge tests and left the hospital the next afternoon.

The attendant came to my room with a wheelchair to take me out to my ride. I know I looked bad, shaved head and large staples that made me look like the son of Frankenstein. People were trying not to look, but they couldn’t help themselves, and they could only imagine what happened. But I was really glad to be going home.

You know when you have an injury, you are always careful not to disturb the area. I could hardly sleep at night worried that if I moved my head to one side or involuntarily moved and hit my head that my brains would come spilling out. I was instructed to take it easy for 3-4 months. That meant not overexerting myself. No sex or running or heading a soccer ball! No fun. Those had to be the longest 4 months of my life, NO SOCCER! Other than that, the recovery was relatively uneventful. In terms of the effect the surgery had on my PD, I would have to wait as the virus infected my brain cells and started to do their thing.

Next, side effects….

 

 

Surgery (GULP)

Well, kind of lost a bit of momentum as summer starts full blast with kid camps, vacations, etc. But I know you have been waiting with excitement for this post! I hope it will be worth the wait.

First off let me just say that I am not really a planner. I have just kind of let life happen. I don’t have a ten year plan or even a five year one. I have pretty much led my life as Matt Damon says in the Martian (great movie) at the end of the movie, “You start by solving one problem, then the next, and so on until eventually you solve enough of them to survive”. Well you can apply that blue print to me.

I did not plan on getting a degree in Anthropology, I just found the classes interesting and  I took enough of them to get a degree. I also thought it would be cool to hang out with the Yanamamo in the forest of Brazil. I got my MPH at Berkeley because I decided that I didn’t want to go to medical school. I never planned on having children when I did, but I wouldn’t have it any other way. Things just happen and you deal with them. Not that I am not committed or focused, I just don’t visualize touring the world in my 50 foot yacht 10 years from now. Obviously this approach to life can have unforeseen circumstances. For example, I never thought about getting something like PD and opted every year not to get my companies long term disability insurance. Big mistake! But in my world, or my view of the world, I never planned on getting sick. Who does??

So how do you think I approached the clinical trial? Drill holes and ask questions later. Twas the night before surgery and all through the house not a creature was stirring…except me. It kind of hit me the night before, I could die from this! Any number of things can happen in 11 hours of surgery. They could hit blood vessels or cause a stroke, etc. I realize the probabilities are low, but hey, how many 40 year olds get PD. So I tried really hard not to think about it and push any negative feelings and thoughts away.

If you have ever had surgery, you know how weird it is to go under. I mean one second I am talking with the anesthesiologist and the next I am lying in recovery. What happened to those eleven hours? Apparently, the minute they stopped the anesthesia, I woke up and asked if we were done, which was pretty surprising. Of course I didn’t see this, but I was told there were something like 25 people in the OR. Software engineers, nurse staff, research staff, computer guys, doctors, interns, and mice (well maybe not mice). I bet they even had the ice cream truck guy in there.

I am attaching a picture of what I looked like post surgery, and I will now forevermore be known as zipper head.zipper head

Then recovery…

 

 

On the Oregon Trail…

First, I would like to make sure everyone knows that all the clinic staff, doctors, and nurses on my journey through this clinical trial (and it is ongoing) have been absolutely fantastic. I can’t even begin to calculate the cost of all this care. But hey, when someone is mucking around in your brain for 11 hours, and all for the sake of science, you want the best! I feel kind of like Steve Austin in the old TV show, The 6 Million Dollar Man (I know I am dating myself on that one). So where were we…

So one part of the clinical trial involved taking a trip to a research clinic in Portland. The purpose of this trip was to see how dopamine levels changed in my blood stream and this particular clinic had been doing this kind of research for over 20 years. Let me just say this right now, this had to be the most difficult part of the clinical trial.

I was on a whirlwind from the moment I passed all the inclusion/exclusion criteria. In order to hit my Jan surgery date, I had to have multiple scans, visits, labs, and this Oregon trip completed. So the clinic coordinator in Portland called me up and we booked my flight and hotel quickly for the 3 day visit (2 of which were in the clinic). They also covered my food and expenses, which included my wife joining me. The downtown hotel was very nice (not that I got to enjoy it much) and the restaurants in Portland are fabulous. So, what can be so hard about this trip you ask?

We arrived the first day, I think it was a Tuesday, checked in with the clinic  and then left for the hotel. I, however, would have to return to the clinic that evening by 9:00. The deal was I would have to sleep in the clinic and turn over my meds so that they could ensure that I was “crashing” in the morning. And from the previous post you know how I love that! I was a dopamine junkie on lock up. So after a long night (I still don’t know why they can’t make hospital beds more comfortable), I was fully crashed (off meds) by morning. By the time the nurses came in to prep me and give me breakfast, I was miserable. The routine was the same for both days, except one of the days was a lower dose and the other a higher dose. No one knew which day was which (blinded). The “routine” is quite possibly the most difficult thing I have done in my life.

THE ROUTINE:

Placement of 2 IV’s, one in each arm. One was for drawing blood the other for the infusion of dopamine. Before they were put in I went through a series of clinical test to establish a baseline.

  • Sitting up, test if I can rapidly touch my forefinger and thumb together with my arms raised above my shoulder. Very difficult to do in an off state.
  • Again with my arms raised, flip my hands over and over like flipping a pancake.
  • Arms raised turning my hands like I was screwing in a light bulb.
  • Test the rigidity in my arms and legs (the neurologist moves them while I TRY to relax).
  • Tap my hands on my thigh and my feet on the ground in a stomping motion.
  • stand behind me and pull my shoulders to test balance.
  • From a seated position, get up and walk as fast as I could to a mark on the floor and back (timed). Try that while lugging around your IV cart.
  • Count of finger taps, both left and right, on a counting machine that had 2 type writer like keys about six inches apart.
  • Cognitive tests like count back from a 100 by 7.

All these things that are normally easy for those that don’t have PD, but it is like climbing Mt Everest when I am crashed! The blood draw and these tests were done every HALF HOUR!! This goes on all morning till the dopamine infusion runs out and I start to show signs of crashing again. Well, the first day, I never turned on! Theoretically, I am supposed to get the infusion and start feeling normal again, NOT. After an hour of the tests, I told them I couldn’t get out of bed anymore. I just couldn’t do it. They reluctantly said o.k. but at the end they wanted me to perform the routine one last time, couldn’t do it. I have told you how active I am, and you have seen the picture, but without dopamine, I was unable to get out of that clinic bed. Around 1 or 2 in the afternoon, I was allowed to take my regular medications and like magic, I was back to normal. But this was all to be repeated on day 2 and if that was the high dose I seriously contemplated dropping out of the study. I slept in the clinic and managed to talk myself into doing it again for the sake of science.

The second day was clearly the higher dose, as I kicked in after 15 minutes with the infusion. The neurologist who was there the entire time doing the test felt compelled to introduce herself again as I transformed into my normal jovial self. After the 2nd clinic day, I was done and finally got to enjoy all that Portland had to offer.

Next Post…Surgery!