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

Time to tell and the new emotion coaster

It's been a day or so since the tentative diagnosis.  This gave me some time to figure out how I was going to tell my family and in what order.  I called my Dad first.  We talked for about half an hour about what was going on and he was reassuring.  It actually felt good to tell someone else what was happening. It's not that I was afraid of what he might say as I knew he would be helpful.  It's that I don't want people feeling sorry for me or for that matter, worried about me. Yes, it's a defect in my psyche and goes back to never asking for help, but I'm too old to change now. As I find out later, this is not healthy. (yes, more foreshadowing to future blogs).  I called my sisters next.  As expected they were both very sympathetic and helpful.  Now for the hard part, my kids.  I called my oldest daughter first as she was the one I was most worried about.  In a previous blog, I mentioned how she freaked out about how bad Parkinson's was when my sons eye twitched. I was worried how I would handle her reaction.  Growing up, she always seemed to think older than she actually was. This has helped her, I'm sure, become the excellent therapist she now is.  But, I was worried that a bad reaction by her might get to me.  She took the news as well as anyone could and offered tons of support and love.  Just what I needed, what a relief.  I called my eldest son next and again, nothing but help and encouragement.  This was going better than I thought it would by far.  Now on to my next son.  If anyone was going to get me to cry it would be him.  I decided I really wanted to tell him in person so I could show him my symptoms were not all that bad.  He asked a bunch of questions so I’m glad I chose to do it that way.  I got through all of this without shedding a tear.  I didn't want anyone, especially the kids, to think I was worried  I decided against telling my youngest daughter just yet.  She was only 10 and didn't want her to stress over something she couldn't see or understand.  As with most families, she, being the youngest, tends to listen a lot and pick up on family conversations. It didn't take her long to figure out there was something wrong with Dad.  We talked about it and I reassured her things would be fine.  I gave her a job to keep track when there were tremors in public.  It may have helped because now she was part of looking after me.  In retrospect, I'm not sure I handled it correctly by not telling her up front, but so far there seems to be no permanent damage.   I don't know if one way is better than another to tell your family you have an incurable, but non-life threatening, progressive, but more than likely a slowly progressing disease.  I guess every family is different and you'll have to judge each person by how you think their reaction will be.  I thought about a group setting but quickly ruled it out.  It sounded too formal for me.  No, I needed to downplay this as much as possible for my own sanity.  A good article on the Parkinson's secrecy can be found here.  If you get the chance to read Bill Geist's book, do so.  It's a fun read with a brief chapter on Parkinson's. 
 I still decided against telling work yet.  This is where I really did not want people feeling sorry for me.  I couldn't help but worry that Corporate would think "we can't give him that project, he has Parkinson's"  or "Lets not expand in his plant, we don't want to stress his Parkinson's." My symptoms were mild enough, I thought, that I had time to show them what I could do then explain that all that time I had Parkinson's.  That way I could show them there was no need to worry.  Over thinking this?   Probably, but it worked for me.  I did decide to tell my closest at work ally though.  I knew I could trust him to keep it quiet.  But, more importantly, I needed someone that would let me know if people were noticing my symptoms.  I highly recommend this because people will talk among themselves long before they will approach you.  Usually, by the time you feel the need to tell people, they have already figured it out.  This way, you can have some control over when its time to tell the people you work with.  Most likely won't work for everybody, but it helped me.
I received a call from the University of Rochester (U of R).  They confirmed my appointment with a neurologist but had this offer.  If I agreed to be in a Michael J. Fox trial (PPMI) I would be switched to the neurologist in charge of the study for the hospital.  I looked the neuro up and she had an unbelievable background including sitting on the Fox foundation board.  I could get top-flight care, for free.  All I had to do was submit bodily fluid samples two times a year and take some memory tests.  Seems like a no-brainer, right?  Oh, forgot to mention, some of the fluid they want comes out of your spine!.  In this study, I would end up getting up to five spinal taps.  Hmm, not real thrilled with that.  I'll have to think about it.  

The days were now turning into weeks of relatively minor symptoms.  There were no big changes and I was adjusting to day-to-day life as a new PwP (Person with Parkinson's). I did have what I'll call an ‘episode’ after a stressful Saturday morning at work then rushing around to get some major chores done.  I was shot the rest of the day. Absolutely no energy or even the will to move.  It became amazing how much stress fatigued me now. I think I could overcome the fatigue, but the apathy is another story.  Apathy, or the lack of desire, worried me the most because I have always been the one to say "let's get it done" and work as long as it took.  Now, I could be easily convinced to do nothing.  Not good.  This would be important to fight otherwise it could rule and possibly ruin my life.
 I’ve been spending too much time reading other parkie blogs too.  A few have been helpful, but there are a couple that have been rather depressing.  I keep telling myself to be optimistic and that everyone else’s symptoms won’t be mine, but it’s hard to read.  Some of the people have had it pretty bad. Then, there was a story at the end of the nightly news about a record producer with Parkinson’s. I cried at the end of it. Only the second time I cried because I have this disease but, as it turns out, not the last time I cried because of Parkinson's.  Slight twist of words there but you'll see what I mean in a moment.  What made me cry at the end of that news story was the guy takes 10 pills a day and yet he still LOOKS like he has Parkinson’s.  Shuffling gait, pan face and tremors.  Made me sad. I should be looking at the bright side, the guy is still walking, still working, still has a life, but it just hit me kind of hard.  Will that be me in 10 years? I tried unsuccessfully to hide my tears.  I didn't want anyone feeling sorry for me.   
Okay, so after all these years I am finally getting in touch with my emotions. This is a good thing, right? Then here we go as it's all aboard the emotion coaster! I got a card from my Mom and it was great!  She wrote me a very supportive and loving note that really made my day.  Everything was starting out well.  I was getting things done. I was in a good, no, great mood. I was happy. Then, just a few hours later and before I knew what was happening it felt like I could cry at any second. This sad feeling just overtook me.  It was gone by the time I left work, but it wouldn't be the last time I felt that way.  A whole new chapter had started and I had no idea, at that moment, what it meant.  If this was from Parkinson's, it is a very weird disease.
I never knew when my emotions would flip.  In a short amount of time, I went from someone that was always in total control of their emotions to someone that now cried at commercials.  I would cry while belting out an 80's rock song on my way to work. Who cries at Hagar singing "Can't drive 55?"   Watching a sad part of a cartoon with my daughter or an emotional sequence in a movie whether at the theater or at home produced HUGE tears.  They got difficult to hide.  I had no idea why it was happening and I couldn't control it.   The tears wouldn't last long and I wouldn't stay sad, but it started me looking at all the symptoms of Parkinson's... could this be my lead into depression?  Could it be I was approaching 50 and a mid-life crisis?  Time would tell. 

Up Next: On becoming a radioactive lab rat for Fox