The day that changed my life: July 6, 1983 or What causes Parkinson's?

If you are reading this, I'm guessing you or someone you know has Parkinson's.  After diagnosis, one of the many thoughts running through your mind is "how did I get it?"   Unfortunately, there are not a lot of answers, but every year we seem to find a few more sources.  Here's some information on what can cause Parkinson's and what may have caused mine.

Every summer when I was in high school and into college, my Dad and I would take a bicycle tour.  One favorite was the five-day trip to the Thousand Islands in northern New York.  It would take two days to ride up to the islands.  We would spend a day relaxing, then ride the two days back.  One year we found out about a large bicycle rally in Paris, Ontario, Canada.  We organized a 9-day trip for that summer and planned on meeting my uncle and cousins in Buffalo.  The ride up was enjoyable and riding your bike across the Rainbow Bridge in front of Niagra Falls is spectacular.  The rally was fun, consisting of lots of day rides with hundred's of other bikers.  We even took a night ride.  If you've never ridden a bike at night you should try it once, with lights of course.  You may be going just 15 mph, but you feel like you're going 30.   The last and ninth day on the road we were finally headed home and it just happened to be my Dad's 48th birthday.

It feels strange to think of my Dad as 48 years old.  At that moment in time, my Dad was three years younger than I am right now (and in MUCH better shape).  I never think of my parents age in relation to when they were my age.  I was 19 then and he was, well... Dad, not a guy in his late 40's.    My kids think I'm weird for coming up with these random thoughts, but it's stuff like this that keeps me up at night! 

Okay, back to what was supposed to be the last day of the trip.  Dad and I are headed for home after what was a great week on the road however I wasn't feeling my self that day.  My stomach was upset and I was dragging behind my Dad all morning. As the younger one, I am normally up front setting the pace and hopefully blocking the wind.  No, today, I was struggling and riding about 25 feet behind my Dad. We got about halfway home, just southeast of Batavia, NY on Route 5 in the little town of Pavilion when suddenly everything went black.
I'll pause right here to re-ask the question, "so, just how do you get Parkinson's?"  And, "why me?"  While the exact cause has yet to be discovered, there are a few factors scientists have discussed (click to go to the sources):

• Genetics
• Tainted drug use
• Pesticide exposure and also here
• Head injury

And if you don't fall into one of those buckets, you join the Idiopathic Parkinson's or the 'we have no idea why you have it, but you do' club.  Don't worry, you would not be alone, as the huge majority falls into this category.


So for me:
Genetics - I got into a free trial with  23 and me.  The results said I am at a reduced risk to develop Parkinson's from 6 of the 8 measured genotypes (LRRK2, etc). A slightly elevated risk in two of them (SNCA, PARK12).  Until more is learned though we can say genetics is probably not the cause.

Drugs - never touched them, tainted or otherwise

Pesticide exposure - I've used my fair share of Roundup® around the house, but I doubt that's what they are talking about

Head Injury -  Hmmm, now where was I with that story?

My Dad tells me it was the worst sound he ever heard.  A guy in a pickup leaned over to pick something off the floor, wasn't paying attention and drove into the back of me at highway speed.  They found me unconscious in a ditch, my bike partially mangled.  The only thing I remember from the remainder of that day is getting shaken awake under bright lights of the emergency room.  The sheriff needed to know which side of the white line I was on so he knew how to write the ticket.  I don't remember this, but I'm told my response was "ask my Dad."  The next day I woke up with a lot of pain, a bunch of scrapes, some muscle atrophy and a concussion (yes, I was wearing a helmet).  Some birthday this turned out to be for my Dad.  Six days in the hospital and a month recovery at home and I was fine.  Or so I thought.  Unless they remove my brain and look at it under a microscope the Doctors can't tell if the concussion was the cause of my Parkinson's.  Although I would really like to know for sure, I'm not quite that desperate yet to find out.  I'll just stick to my neurologists claim that the concussion is probably it.

Up next:  Telling your employer plus LOTS of links

The DaTscan or how to get arrested at the dump

The DaTscan.  (click for info)

Just in time for my diagnosis, the FDA approved the use of the drug Ioflupane I123.  This highlights the dopamine producing cells in your brain so they can be detected by a SPECT imager.  Sounds complicated, but basically you're injected with a radioactive iodine material that makes parts of your brain glow when the "MRI-like" imager scans your head.  What the Doctors are looking for is a change in the standard 'comma' shape of a group of cells as in this picture below.

It's finally scan day for me. Before you can begin the testing, though, you are first injected with a chemical to block the radioactive absorption into the thyroid.  It's bad enough you have a problem with the nervous system you don't want to mess with the endocrine system too.  After an hour wait, the technician opens a lead-lined box.  Right here you start to think, "am I really going to let you inject that into me?"  It contains a syringe and small bottle of the radioactive juice.  It was a little intimidating I must admit, but I want to see what's going on inside my head so glow me up. The tech slides the needle into your arm, no pain, he's good.  Now I have to wait for it to glob onto the dopamine cells in my brain or about 4 hours. Usually, the wait is over lunch and they say there are no restrictions.  That's code telling me it's okay to have a beer with lunch.  Since I am now radioactive and am not in a lead lined suit I asked if I had to be wary of being near anyone with this burbling through my system. The technician assured me this was a very low dose of radioactivity and it wouldn't be a problem.
After the 4 hour wait, you lie on a table and for 45 minutes a large, very slow moving sensor rotates around your head.  It's pretty open though so this one doesn't push my claustrophobic button.  Actually, the hardest part is staying awake.  You can't move your head during the test.  That's no movement for 45  minutes straight.  Well, it was warm in the room and a fan was blowing over my face.  After about 35 minutes I dozed off and, of course, my head moved.  Start over, do not pass go, do not collect $200, try again, another 45 minutes, ugh!  From then on I always ask for my head to be taped down then, if I fall asleep, there are no issues.  
My DaTscan test result was positive (or negative depending on your point of view.)  I didn't have the comma on one side, more of a round ball.  This took that long list of possible diseases and narrowed it down to basically three: 
Multiple System Atrophy (MSA)
Progressive supranuclear Palsy (PSP)
Or Parkinson's.  
The symptoms of the first two are pretty severe.  No, it was pretty clear now... this was Parkinson's.
I now have my diagnosis, but life goes on.  Things still need to be cleaned, the dog still needs walking, work still needs to be done around the house.  Just because you are diagnosed with something, life does not stop.  The next day, I fill a pickup truck with a pile of scrap and left to drop it at the landfill.  As I approach the scales at the entrance I'm reading the signs and one of them states 'NO electronic devices' allowed to be dumped.  

Crap, most of what I had was wood or metal, but I did have an old VCR in there.  Oh well, if I have to keep it I would just pull it out of the pile.  So I proceed up onto the scales.  I get to the window and the guy working inside asks me to drive around again this time slower.  Okay, I drive around again.  He slides open the window and asks what I have in the back of the truck.  Crap again, somehow they figured out I have the VCR.  I try to tell him what I have, but by the time I get to the VCR he is not listening.  He tells me to stay where I am and slams the window.  I see him get on the phone and all I can think is "wow, they are serious about no electronics!"   A minute later here comes a pickup truck that skids to a stop in a cloud of dust in front of this little building.  What looks like some type of Supervisor exits the truck and runs into the building.  I can see him grab a binder and start flipping pages.  He then slides the window open and states "I've called the Sheriff and the County Executive, do not move from that spot."  Then slams the window shut and gets on the phone.  As you can imagine, I am now freaking out.  I can see him talking on the phone as a minute or two passes, then holds the phone to his chest and slides the window open.  "I'm not supposed to ask you this but have you had any medical procedures lately?"  "Procedures, no, why are you asking?" I stuttered.  "Because something has set off the radioactivity alarms". Ding ding, ding.  "Ahh, yes, I had a study done yesterday and was injected with radioactive iodine," I told him.  He then made me park the truck and walk onto the scales alone.  "Yep he said, it's you."  At that moment, I felt like I was glowing a neon green.  My next thought was the conversation I had with the technician that injected me.  "Very low dose," he said. "Nothing to worry about," he said.  Not quite low enough to keep you from getting arrested at the dump apparently!  I did learn something new though, who knew they had radioactivity detectors a the dump? 

Next up: The day that changed my life, July 6, 1983

On becoming a radioactive lab rat for a Fox or PPMI

The Michael J Fox foundation has put together a tremendous study to look for something in your body that changes as Parkinson's advances. A biomarker.
  PPMI - Parkinson's Progression Markers Initiative -(link attached) You should look into doing this - even if you're reading this and don't have Parkinson's - they need you. 
So as you probably figured out, I decided to join the trial.  If you read my previous posts (you did, right?) you know I had some hesitation.  But the opportunity to be seen by a top neurologist - for FREE - swayed me. Before I describe the PPMI appointment with my new neurologist, Dr. Richard, from the University of Rochester, I need to backtrack to the opening evaluation. 

How many times has this happened to you?  The car is making a strange sound.  It goes on for about a week so you make an appointment with the repair shop.  You finally bring it in to be seen and.... nothing, the car runs and sounds fine. No strange noises.  Well, that's what happened to me during my initial visit to my new neurologist. Frustrating!
It's been a couple months waiting for this appointment. Nothing new on the symptom front, little of this one day, little of that the next. Basic symptom roulette.  We went through the normal battery of tests.  Touch my finger, open and close your hand as quick as you can, tap your heel, all the basics.  It's not that I want to have a neurological problem but when you're seeing a specialist you would kind of like them to at least see some symptoms that you've been seeing.  I had little to no tremor and no rigidity.  She did see some slowness my left hand so at least there was that.  I have no idea why my symptoms abandoned me that day, but I still wanted to ask the question, do you think I have Parkinson's?   She beat me to it and said if it's Parkinson's it VERY early. Hmm, Mr. overly observant strikes again. The DaTscan would hopefully answer a lot and was scheduled along with my first study visit. 
I've always liked physical and mental tests.  No, not the kind of tests you got in 10th-grade geometry. I like the ones that measured a particular skill or attribute like eyesight or memory.  So this trial was right in my wheelhouse.  I arrived on study day to be disappointed that I would have to wait another month for the DaTscan with the radioactive injection.  There was a problem acquiring the juice they inject that lights up parts of your brain. Sorry, didn't mean to get all technical on you there, but, once again, more delays.
The study went on, though, and started with the fluids: blood, urine and, of course, spinal.  I was nervous but as it turns out for nothing.  They numb up your lower back then insert a small needle and basically tap you like a keg.  I actually told the Doctor I had no idea when she started and when she stopped.  I'm sure a lot was her technique, but it was a big relief.  The rest of the testing was fun, well... kind of.  It started with lots of questions to answer and to self-rate my levels.  Sleeping, tremors, walking, getting dressed, turning in bed and about 30 more.  Your basic, as it turns out, Parkinson's measurement scale (MDS-UPDRS) to determine the severity of your symptoms. Here is a link to the actual questions. 

 Then the memory tests started.  I was asked to remember five words then repeat back as many as I could remember:  face, velvet, church, daisy, red.  Now quickly, because you're on a timer, name everything you can think of that starts with the letter F.  Now name as many fruits as you can think of in 60 seconds.  On this one, I wasted the bulk of my time trying to decide if a tomato was a fruit or a vegetable.  There was also a cognitive test for executive function.  The nurse would say a sequence of letters and numbers and you have to repeat them back rearranging letters in alphabetical order then numbers lowest to highest.  For example,  they say 4F2W and I would have to repeat back FW24.  They keep adding numbers and letters until you get it wrong a couple times in a row. Have someone ask you this one out loud: 8AF3J71G.  Go ahead, I'll wait.... My stupid competitiveness would always make me try and beat my previous score.  These tests were supposed to be fun, not stressful!   You are almost done with all the tests and you think "that wasn't so bad," and then they ask one final question. Now I'll ask you the same one, without peeking up above, repeat back to me the five words I asked you about at the beginning of the test.  At that point, I remember staring out and thinking "What five words?  Oh, uhh velvet, something, something...." There also were some other tests for sleepiness and depression/anxiety mixed in, but the one I found most odd was a picture of a lion, a camel, and a rhinoceros.  I was asked to identify them.  I did, then told them, "if I ever come here and cannot identify them, for God's sake, DON'T LET ME DRIVE HOME!"  The neuro came in to do some quick physical tests to rate my levels and then you were done. If they could have done the scan it would have been about a 7 hour day, without it the testing takes 3-4 hours.  All in all, it was actually pretty fun, and well worth the time.  If you're interested in all the tests they perform or are just a geek like me then look here. 

Next up:  The DaTscan or how to get arrested at the dump