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!

 

 

Merry Christmas

Clinical trials. There are lots of them and unfortunately many struggle to enroll enough participants. Knowing this, I enrolled with Fox trial finder to see what might come up. Well I didn’t have to wait long before I got an e-mail asking if I would be interested in participating in a phase 1 trial. Phase one means that it is primarily about safety with a secondary outcome being efficacy. I responded immediately and asked what was involved. She explained that if I passed all the entry criteria it would involve implanting a viral vector with gene’s that would improve my brains ability to process dopamine. Real cutting edge stuff.

I talked it over with the family and responded the next day with a “Let’s do it”. Then things got really fun. Below are the eligibility requirements (I think getting into the Navy SEAL’s would be easier!):

 Inclusion Criteria:

  • Diagnosed with idiopathic Parkinson’s disease and on dopaminergic therapy for 5 or more years, with at least the last 3 years including levodopa.
  • Modified Hoehn and Yahr Staging of III or IV off medication.
  • Candidate for surgical intervention because of disabling motor complications.
  • UPDRS Part III (total motor) score ≥ 25 and a maximum of 60 in the OFF state.
  • Unequivocal responsiveness to dopaminergic therapy.
  • Stable Parkinson’s symptoms and medication regimen for at least 4 weeks prior to screening examination.
  • Ability to comprehend and sign the informed consent.
  • Normal Laboratory values prior to surgery.
  • Neutralizing AAV2 antibody titer ≤ 1:1200
  • Ability to travel to study visits alone or able to designate a caregiver.
  • Subject agrees to defer any neurological surgery, including deep brain stimulation, until after completing the 12 month study visit (unless recommended by study neurologist).
  • Subject agrees to not participate in any other therapeutic intervention study for 12 months after surgery.
  • Subject agrees to not have any vaccinations within 30 days of surgery.

Exclusion Criteria:

  • Atypical or secondary parkinsonism, including but not limited to symptoms believed to be due to trauma, brain tumor, infection, cerebrovascular disease, other neurological disease, or to drugs, chemicals or toxins.
  • Presence of dementia as defined by a Mattis Dementia Rating Scale-Second Edition (MDRS-2) of less than 130 at screening.
  • Presence or history of psychosis, with the exception of mild, benign hallucinations believed in the judgment of the investigators to be related to Parkinson’s medications.
  • Presence of severe depression as measured by Beck Depression Inventory II (BDI-II) > 28 or a history of a major affective disorder within 5 years of screening examination.
  • Current suicidal ideation or suicide attempt within 5 years of screening examination.
  • History of substance abuse within 2 years of screening examination.
  • Brain imaging abnormalities in the striatum or other regions that would substantially increase risk of surgery.
  • Contraindication to MRI and/or gadoteridol.
  • Coagulopathy or inability to temporarily stop any anticoagulation or antiplatelet prior to surgery.
  • Prior brain surgery including deep brain stimulation, infusion therapies or any other brain surgery.
  • Prior gene transfer.
  • History of stroke, poorly controlled or significant cardiovascular disease, diabetes or any other acute or chronic medical condition.
  • History of malignancy other than treated carcinoma in situ within three years of screening evaluation.
  • Clinically apparent or laboratory-detected infection.
  • Prior or current treatment with any investigational agent within 2 months of screening evaluation.
  • Chronic immunosuppressive therapy, including chronic steroids, immunotherapy, cytotoxic therapy and chemotherapy.
  • Pregnant and lactating women.
  • Subject with reproductive capacity who is unwilling to use barrier contraception.
  • Any factors, medical or social, which would likely cause the subject to be unable to follow the study protocol, including geographical inaccessibility.
  • Ongoing treatments such as, neuroleptic medications, apomorphine, or levodopa infusion therapy (Duodopa®).

I passed. There were MRI’s, PET scans, and off med visits. My personal favorite was any visit that required me to be off medication as that is my nightmare. My muscles would start cramping and seizing (it is really fun to see your pinky start moving outward and your facial muscles tightening to the point where you can barely speak). My brother accompanied me on one of these visits and thought I was having a stroke! To make things more interesting, the PET scan which involves getting into a tube inches from your face, was for over an hour. All these were pre-surgery and would be repeated all over again after the surgery. I was a pin cushion with all the IV’s and blood tests. Good thing my veins are bigger than an LA freeway.  The surgery was scheduled for Jan 12th, but before that, I would have to make a trip to Oregon…

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?

 

 

Is There Research on That?

 

O.K., now that you discovered that you have an incurable progressive neurological disorder, what are you going to do about it? Start taking meds right away, wait awhile till things start to get worse, try any number of “alternative” treatments, look on Craigslist for anyone selling new brains. It turns out that the gold standard treatment is still carbidopa/levodopa, which has been around since the 1960’s. However, after awhile, you have to start taking more and more to get the same results and side effects can start to occur at the higher doses. I opted to hold off on starting PD medications for as long as  could. There were however those alternative treatments…

So what is it about incurable diseases and the human propensity to try anything that is out of the realm of mainstream medicine. I have an anthropology degree and a masters in public health, so you would think I would rationally discard all those alternative treatments . Well I didn’t. You ever walked into a hospital or doctors office and see people smoking and then get inside and find out that the guy who was blowing smoke rings is the guy who is now giving you a rectal exam? I mean there is no greater association with cancer than smoking. It has been studied over and over again and costs us billions in terms of  health care and loss of life (ironically smoking is the one thing that has shown to be protective against PD). Yet there is that doctor puffing away. Talk about rationalizations! Well it kind of the same thing with having an incurable disease. And it makes sense because what we can’t give up is hope. Hope that one of them might actually work in reducing symptoms or even, dare I say it, cure the damn thing! Without hope you have given in and given up. I have an abundance of hope and will never throw in the towel. I am however still rational, so let me describe a few that I did and did not try…

There was a health center I went to on the east coast (I live in California) where a healer claimed he could cure cancer and many other conditions including PD. It involved group visualization, and for a lack of a better term, Voodoo dolls. The treatments could even be done by phone. Well I visited the clinic and as I was waiting to be seen, they were setting up the room for a group. The guy setting up the chairs clearly had Parkinson’s and he wasn’t looking to good. I thought to myself, the guy works here and it clearly wasn’t helping him, so I got up and left.

There was acupuncture. It helps with so many conditions and I had been to one for back pain so I thought why not. It didn’t seem to help. But I might try it again with a different practitioner as the one I was seeing asked me which leg hurt worse! He clearly was not paying attention.

I tried CQ10 (vitamin supplement) at high doses as it had showed some promise at being neuro-protective. Well that stuff is EXPENSIVE and they ended up doing a trial and found that it wasn’t effective. The kids were overjoyed as their Christmas budget substantially increased.

I went to a chiropractor since one of my main symptoms is rigidity. And that seemed to help a bit, but again the cost of bi-weekly treatments started to impact the budget and the stiffness would return anyway within a day. But I would tell others that it is worth a shot.

So I have more to tell, but I don’t want this to become a novel, and hopefully you will want to come back for more. Hey a guy still has to work to pay the bills! 🙂

 

 

 

 

 

Juggling Chainsaws

So I mentioned in an earlier post the importance of exercise in helping to keep PD symptoms at bay. Everyone should exercise, but I believe it is critical for PD patients to do so. Why? Because it stimulates the brain, increases blood flow, helps balance and posture and elevates your mood. I believe that it is the primary  reason I have been slower in the progression of my disease! That and keeping a positive attitude. Yes some days are harder than others to get going, and it is ok to take days off, but over time you will notice how much better you feel!

I am not advocating you take up juggling chainsaws, but if there are some stairs, climb them. Maybe you take only one flight initially, but then add another flight over time. Get a dog (or I hear pot belly pigs are great). They are great companions and they will force you to get out of the house and walk. On your walk pick up the pace for a hundred yards. If there is a hill, don’t avoid it. Grab a bike and ride, even if just around the neighborhood. Enroll in a dance class, take yoga. There are so many articles out there espousing the benefits of exercise and improvements in PD symptoms. Don’t isolate yourself, you are capable of so much more than you think!

I have been lucky in that I have always played and had a passion for soccer. A passion which I have maintained over the last 10 years of having PD. I play in an over 40 and over 50 league which are extremely competitive. I usually get in 4 days of playing a week, 2 pick up games and 2 league games. And I am not talking for 10 minutes, I am out there for 75-90 minutes and more than holding my own (usually score 1 or more goals a game). Anyone who has watched soccer know that it requires balance, change of direction, and explosive speed. Performing these movements have helped my PD symptoms.

I also noticed that when I am crashing a funny thing happens. I have trouble walking and will shuffle around like an old man, but put a ball in front of me, and all that goes away. Something about dribbling that ball overrides that part of my brain and a different part takes over. It is amazing. I have attached a video and recent picture to show that not all PD patients are frail and that having PD does not mean giving in or giving up! The picture is from about 8 months ago (I am 50 in the picture as well as the video). The video is of me waiting for yet another brain scan in the recent clinical trial. The clinic coordinator is using her phone and I am juggling a Nerf soccer ball. I have an IV in my left arm and I have been off meds for 13 hours (crashed). Watch what I do at the end.

New Face Of PD

So I hope this provides inspiration to those who have PD or even just the average person looking for encouragement. Maybe you can help me get this message out by sharing with others, linking to this blog, etc. I am relatively new to the whole social media thing. Get out there and do it!

 

 

Cheese Burger with a side of fries

So there has to be a beginning to all this and since many may be unfamiliar with PD (Parkinson’s Disease), a little background would be useful. There are many resources on the web to learn about PD, so I want to skip all the details, but a few important facts ..

By the time you notice symptoms, 80-90% of the dopamine cells are already gone. Kind of like going into the Sahara desert thinking you have a full tank of gas and having the fuel light come on. Then the check engine light comes on and your thinking now I am really screwed. But with a check engine light, they plug your car into the computer and viola, your problem is solved and they replace whatever was wrong. With PD there is no lab test or MRI to identify it. Basically the neurologist runs you through a series of tests and rules out other neurological conditions . The diagnosis is primarily based on your symptoms. So what sent me down this path?

I vividly remember the day that a fellow soccer player asked why I did not swing my left arm when I ran. I responded, “I never knew that”, as a chill ran down my spine. I knew intuitively that something was wrong. Then I noticed my left hand would sometime freeze while typing. That sent me to my primary care doctor who referred me to a neurologist. Well after many tests, he suspected PD, but because my symptoms at this point were still mild he sent me to a movement disorder specialist.

I drove the hour and a half to the appointment and she looked at my files and ran me through the usual physical tests. Towards the end of the appointment she was not convinced that I had PD, but as I got up to leave (feeling a little better about this whole thing) she said, “oh, one more test”. She asked me to raise my arm and there it was, a slight tremor. “You have PD”,  she announced with almost excitement at figuring this case out. I mean it was as nonchalant as ordering a cheese burger with fries at a burger joint. She then topped that off with “At least you don’t have MS”…can I have a coke with that.