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

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!

 

 

Can I take this on the Plane?

imagePD patients can definitely lead full and exciting lives, we just have to plan a little differently. If I know I am going to be away from the mother ship (my lunch pail of medications), then I need to make sure I have got enough supply to cover the trip. I am currently taking Sinemet, Amantadine, Azilect, Artane, Lisinopril, and Trazadone and I seriously have an old school lunch pail to fit everything. Amantadine is an anti-viral flu medicine that just happens to help curb dyskinesia. Artane is not really a PD drug, but can help with cramping. Trazadone is for sleeping. Lisinopril for blood pressure, Sinemet and Azilect are for PD. I don’t go anywhere without a full days supply. Seriously, if I got on a plane and I accidently left my lunch pail in the terminal, they would have to turn the plane around. I would never check my lunch box at the gate, if they lost it I would be screwed!

So I had this idea. You know how they are building all these recharging stations all over the country for hybrid vehicles (by the way I love the Tesla designed stations). Why couldn’t we have re-medication stations? Basically a box stocked with all the different PD medications. You would get a card that when inserted would dispense the appropriate medications for which you have a script. Goodbye lunch pail! Wouldn’t that be cool.

So here is the kicker, for my particular situation, I have to take my meds every hour and a half. That can seriously put a damper in ones sex life, “Sorry I need to take a pill break”. Why you ask? Well, since my surgery, I am really sensitive to dopamine (I will cover the surgery in its own post) . It is a balancing act where I am trying to maintain a consistent blood level of dopamine, while minimizing the dyskinesia. Take to much and my arm moves around like a fish flopping on a boat deck, not enough and I have trouble moving (the crash). I was going to try a new extended release formulation called Rytary that would involve three times a day, but it was not on my health plans formulary. It was going to cost me $800 a month, lets see BMW payment, medicine, or food. Needless to say, I did not fill that script. Speaking of which, I don’t know how the uninsured or under insured could afford having PD. Azilect alone cost something like $700 a month. My neurologist jokingly said when we discussed Rytary, that it would probably be cheaper to get deep brain stimulation surgery!

So that is it for now. I bet you can’t wait to hear about the surgery :). If you are enjoying these posts then please share with others. The more the merrier.

 

 

 

Sex, Drugs,and…..

The tough part about writing a blog about a neurological disease like PD is trying to make it a compelling read. Not just to the PD community, but to a much wider audience. Most people would rather watch paint dry. So how does an unknown guy like me get people like you to wake up in the morning thinking about this blog. I mean I am not famous, at least not yet :), but I have a story to tell and a willingness to put it out there for others to enjoy and maybe the next time you see a PD patient, give them a hug (well, not the guy with the pit bull). So where were we…

In the last post we were looking at some alternative therapies, none of which seemed to work that effectively. Sooner or later I would need to start medication. I had managed to stave off taking anything for 5 years (not bad). The turning point was a half mile run, downhill, which turned into a cramping nightmare. My calves, legs, and feet were all cramping. This did not sit well, so I went to see my neurologist who started me on Sinemet. There are many PD drugs and I will eventually share with you all that I have taken but in staying true to the title of this blog, I would like to highlight Mirapex.

If available, this would have been the drug of choice at Woodstock. It effects people in different ways, but it comes with a warning that “it might cause or increase compulsive behavior like sex and gambling”.  People have lost their life savings and destroyed their marriages while on it. I thought when my neurologist prescribed it that I would not succumb to these urges because I am strong willed. Well, I was just a wee bit wrong.

First, there was a trip to Vegas. Talk about a kid in a candy shop! Once I had burned through my budget, I was left stalking the craps table. I would circle the table, no longer able to play, but wanting to be part of the action. You realize that if you are making the clients at Hooters nervous you have really achieved something! Ok, but this was Vegas and it was a plane ride away and not so easily accessible. Then the real fun started.

Turn out that there are many casinos relatively close to where I live. Pretty much if you’ve got a parking sized lot on Indian land there will be a casino on it. At first I would make the occasional trip to the black jack tables, but these trips became more frequent and I would sneak out of the house at 2 or 3 in the morning so that my wife would not notice. When I look back on it, I am pretty embarrassed about the whole thing, but hey those pleasure centers of the brain working with Mirapex as the fuel needed to be fed. The low point had to be sitting at a black jack table on Christmas Eve while pretending to be out shopping. Can’t get much lower than that! Or maybe it was going in with 20 dollars hoping to go on a run of luck. You pick.

I also had a weird physiological response while on Mirapex and sitting at the tables. I would start sweating profusely! My entire shirt would soak through and I would be dripping on the table. Security actually stopped me as the waitresses were complaining that I was on drugs. Which I was, but not the good ones. Those were the dark times and they were extremely hard on the family. The good news is that once off the Mirapex, I returned to normal. I tell my wife that at least it wasn’t a sexual compulsive behavior!

How;s that for drama?