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

D-day

February 1 – D- Day – well, God had other plans.  A MAJOR snowstorm hit with number two coming tonight.  The storm dropped a whopping 5 inches of snow (yes, sarcasm) but since it was supposed to be worse it caused widespread panic and cancelations including my neurologist appointment.  Yeah, everyone over-reacted, big surprise.  THE appointment has now moved to Friday.  I have to suffer through the rest of this week wondering.  My wife is right, though, chances are, I’m not going to find out anything definitive during the appointment, but I’m tired of waiting.  I keep reading blogs by people that have been diagnosed over the last 5-10 years.  Most are pretty upbeat.  I guess I’m searching for what to expect, but the great part of Parkinson’s (yes, more sarcasm) is everyone is different.  They have no idea how fast things progress or what progresses and what doesn’t.  Overall the consensus is that it still sucks no matter what level you have.  No one really talks about their bad days in any detail, though.  Makes me nervous.

Read some articles today about the benefits of exercise at slowing the progression of the disease.  Great, more of what I don’t want to do.  Why is it always more exercise?  Why can't it ever be more chocolate pudding?.  Maybe this problem is just God’s way of making me get into shape. Here is an article on the effects of exercise

February 2, Groundhog day (new D-2), and I hope I don’t have to live last night over again.  Felt pretty good going to bed, had a good day with minor symptoms so no drugs I decided (Advil or Advil PM is as hard as I go, …for now) and went to sleep. 

          1 am wide awake – started thinking about all the bad stuff that can happen with this disease.  Just what was late stage Parkinson’s and could I survive it?  By that point, would I want to?  I scared myself awake and now there was no fixing it.  I couldn’t get comfortable, no matter what I did.

          2 am still awake

          3 am still struggling then finally at 3:15am I took an Advil PM.

          3:30 am still nothing. 

          4 am – went downstairs and laid out in the recliner.  Dozed off after a bit and then, magically, it was 6 am. Time to get up.  Fell back asleep till 6:15 when my wife came down.  Ugh, getting up was hard – Never take Advil PM so late errr… early!  From what I read most of the meds for Parkinson’s don’t help with sleep.  Great, just great.  This so far has been the worst part. I've got to find a way.

I’ve done so much research on Parkinson’s that if I don’t actually have the disease I’ll be lost.  Not that I want it, believe me, I DON’T.  But, I keep looking up other things it could be and don't like the options.  Only time will tell, unfortunately.  With this disease, all you can do is wait and see.  Fridays appointment can’t come soon enough.  I hope it’s not a letdown.  It’s 6:30pm now, Wednesday, Feb 2^nd and 3 hours till I take 1 or maybe 2 Advil PM’s to help, hopefully, make a restful night.  Oh, by the way, groundhog predicts early spring, yippee!

February 4, 2011.  The new D-day.  I’ve been praying this is something else but somehow deep down I have this feeling that I know.

My wife and I got to the Doctors office at 10 am, right on time, off to a good start.  Did the obligatory exchanging of the insurance info and only waited about five minutes before getting called in.  The Physician’s Assistant was a happy lady, too happy for the mood I was in, and we reviewed all my symptoms.  After a page full, I warned you that I am very observant, she did some quick tests and was off to get the Doctor.  He was nice and was very interested in seeing for himself what was wrong with me and not jumping to conclusions.  Standard tests, walk here, touch this, look over here.  He tested some reflexes and grabbed my arms.  At the beginning of the appointment he said he couldn’t be sure I had Parkinson’s but by the end he said it was better than 50% chance.  I could tell by the way he looked at me that it was higher than that.  We talked about other testing I should get and he wants an MRI to make sure there are no lesions or tumors, oh what fun this has become!  Blood tests were ordered to rule out anything with the thyroid. You've got to love a disease that has no real diagnosis.  "You might have this, or one of these 10 other things."  You start wondering what would be the least objectionable.  It surprised me he didn’t know anything about the new DaTscan approved by the FDA for detection of Parkinson’s.  But, it was just approved 2 weeks prior and Parkinson’s isn’t his specialty.  He suggested we go to Philly to the Parkinson’s center there, but I think we may go to Rochester.  Closer and they have the DaTscan.  I wonder how much that costs? (future blog coming about my many DaTscan’s and how I was almost arrested because of one).  On the way out I asked what we should do going forward and his answer stung me to my core.  “Enjoy life now while you still can,” he said.  Now how am I supposed to take that?  I know he meant well, but it felt like I was just given a death sentence.

We came home and my wife and I hugged and she cried.  Although I have no idea what’s going to happen to me or how fast it will happen, I feel the worst for her.  I read about these caregivers for Parkinson’s patients and I don’t want her to become one.  She is my wife not my nurse.  She shouldn’t have to be both. Oh, I’ve had that damn smell with me all day today too.  Sweet, antiseptic, Band-Aid smell.  Couldn’t shake it. This disease is just weird.

Couple things I didn’t tell the Doctor and will wait for the specialist.  I’m worried if there could be a transfer of symptoms over to my automatic reflexes like swallowing or even breathing. I’ve started to occasionally drool at night. I know, gross right, but it was like I forgot to swallow.  Scares the hell out of me if it can affect other things that are supposed to be automatic, like breathing. Update: I confirmed with my new neuro that it can’t – whew! Although, I did find this on autonomic dysfunction, hmmmm?

Next up – Superbowl meltdown plus the first of many