Talking to your employer about Parkinson's Disease

I was coming up on a year since diagnosis and the next Manager's meeting in Chicago was fast approaching.  Based on my symptoms and how much stress affected them now I was sure I wouldn't be able to get through the meeting without someone noticing.  I really didn't want to have to lie about any shaking, but that wasn't my biggest concern. When under stress, I was having great difficulty finding the right word and then stuttering trying to get it out.  While you can't really make your career at these Managers meetings you certainly could harm it.  As I continued to try and build recognition for my Plant, I didn't need to cast doubt about my leadership ability.  But, then I'm left with the cloud of doubt I mentioned in an earlier post.  If I tell them about my Parkinson's will Corporate be less inclined to help my plant grow as a trade-off for keeping my stress to a minimum?

I needed to talk to somebody that went through something similar.  Luckily for me I have a friend in Corporate that recently disclosed she has lupus.  I knew I could trust her to not only be honest but not to disclose what I was about to tell her.  Her advice?  Tell them!  She laid it out pretty easily for me:
1) I would be surprised at the support I would get
2) No one would feel sorry for me. 
3) I would have a lot less stress because I didn't have to hide my symptoms

I still wasn't sure so she gave me the name of the Executive she confided in to get his take.  Again, I would have to rely on him not to disclose anything until I was ready but trying it out on someone I looked up to would be just the practice I needed to tell everyone else.  So I arranged a meeting in Chicago with him.  What a relief it was to hear the confirmation of support I needed plus the promise not to disclose anything until I was ready.  It gave me the confidence to come back, tell my staff, my plant operations team and my boss.  I think most people would be surprised at the support they get and may not realize there is someone they can trust out there.  If you do share your diagnosis and don't get a positive reaction from your employer, would you really want to work there anyways?  I know every situation is different (just like this disease) and finding a new job with Parkinson's creates a whole other set of problems. I've recently discussed a situation with someone where it was NOT in their best interest to tell the employer.  Luckily my experience was like many I've read about, a good one.  You may fool them for a while, but eventually your employer is going to start noticing things.  It might be better for you to control the story.  Feel free to comment and get the discussion rolling!

Need more advice?  Look at these sources for their experiences.

Links to information on talking to your employer

Good article from ADPA on telling your employer here 

Excellent story by a neurologist that has Parkinson's disease  here

NY Times article mentioned in earlier post here

Michael J Fox Foundations advice here

Interesting article from about health on talking to your employer and coworkers here

NPF's advice on talking with your employer here

Working with Parkinson's here and here

Talking with your employer from the Parkinson's hub here

Trying to get a job when you already have Parkinson's here

Job accommodations  here


I've created a links page to accumulate interesting topics found regarding Parkinson's.  Just click on Useful links on the right column.

Up next:  Time to start medication... or not?

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

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

Superbowl meltdown plus the first of many

Okay, I just re-read the last post and I may have missed the point I was trying to make.  For those of you just going through the diagnosis phase or those that know someone that is the anxiety of not knowing what's wrong can be worse than finding out. There are a whole host of diseases that cause Parkinson's like symptoms and some of them are pretty nasty.  There is no definitive test to say you have Parkinson's so even being told you have it is still a guess until they can see how you progress.  At this early point in the diagnosis phase, the neurologist will tell you that you have Parkinsonism symptoms.  Basically, you have something that makes you look like you have Parkinson's.  Here a partial list I found of things, besides Parkinson's, that can cause these symptoms:

• AIDS 
• Corticobasal degeneration
• Creutzfeldt-Jakob disease
• Dementia pugilistica or "boxer's dementia"
• Diffuse Lewy body disease
• Drug-induced parkinsonism 
• Encephalitis lethargica
• Essential tremor
• Genetics
• Multiple system atrophy
• Pantothenate kinase-associated neurodegeneration
• Parkinson plus syndrome
• Progressive supranuclear palsy
• Toxicity due to substances such as carbon monoxide, carbon disulfide, manganese, paraquat, mercury, hexane, rotenone, and toluene (inhalant abuse: "huffing")
• Vascular parkinsonism
• Wilson's disease
• Paraneoplastic syndrome

Yeah, that's what I thought when I first read through this list too.  If you are anything like me, you'll painstakingly go through each symptom for every disease listed and crosscheck against your own list.  Yes, self-diagnosis will drive you crazy.  I don't recommend it because it's like going to web MD and typing headache.  You either have a sinus infection or a tumor. That said, you know something's wrong, you don't know what and this list is in front of you.  Knowing that it could be months or years before they figure it out isn't helping. There is the DATScan test which does narrow the diagnosis down to a few possible diseases, but you still have to wait to see the progression. Bottom line, it's a waiting game no matter what you end with.
   I promised you a meltdown in the title so here goes.  It's Superbowl Sunday and as the day progresses, I feel worse and worse.  Every symptom is peaking at once including, for the first time, I think, my blood pressure.  It made enjoying the game impossible. Major tremors, pain in the muscles, stuttering, dizzy and as I mentioned it felt like my blood pressure was pounding,   By 9 pm I had about enough and actually got in the car drove to the only place I knew open that late that might have a blood pressure monitor, Wegman’s Supermarket.  I DO NOT recommend anyone that ever thinks their blood pressure is spiking or for that matter have a host of other symptoms climb in a car and drive anywhere.  I just couldn't take it anymore and had to get out.  Yes, I should have asked for help but, if you know me at all, that's not my specialty.  Everything in my body seemed to be against me or at the least, out acting on its own and not helping me.  I may never know if my theory is true but I'm still leaning towards your body is reacting to getting hit with lower levels of dopamine.  It doesn't know how to handle it which causes some strange symptoms.  I'm not a Doctor and don't pretend to play one on the internet, but something is causing these problems.   Well, after all that, bad news, as the pharmacy was locked up and I couldn't find out what my BP was.  By morning, though, I was feeling better, but it would have been nice to know if I was right and my BP was high.  I know I was told Parkinson's isn't supposed to affect things like blood pressure, but something was happening. What the heck could be going on?  It would end up taking a long time to find out. Yes, that's a tease for another, much bigger meltdown later.

February 10, 2011
MRI today of my head and neck.  Looking back it was the first of more than 10 that I have had.  Admittedly, I'm in a research study where I get two different kinds every year plus I had some back issues requiring more imaging.   In the tube I go, as we've got to make sure it's not anything other than Parkinson’s. So not only do I have to come to grips with the fact that I may have a degenerative, incurable brain disease but, now have to worry about tumors, lesions or a host of other things. I did learn something about myself during my first MRI though.  I'm lying face up on the table about to be slid into the machine. As I start to enter, the roof of the tube comes into view.  It's about 2" above my nose.  I felt instant panic, threw my hands up grabbing the machine and said "nope, can't do it."  The technician was nice and asked if I was claustrophobic.  I never had been before so why now?  What to do, I need this test!  I'm tired of waiting for answers, but I knew I wasn't going to be able to go in there.  The solution?  The technician loosely placed a small towel over my face so, if I opened my eyes, all I would see is towel above me like I was in a little tent.  No idea why it worked, but it did.  I've used the same technique ever since.  Of course, like everything with this disease, I have to wait for results from the MRI.  Nothing seems to be in my favor in this whole process.  Another week of waiting.
I still haven’t told anyone what is going on yet.  Well, Rachel told her parents, she felt she had to.  I’m going to wait until I see the Neurologist again because by then, he’ll have the results of the blood tests and MRI.  If they are all clean, then confidence is high that it's Parkinson’s.  Then I’ll have to figure out who to tell and when.  Also, I’m going to transfer to Rochester, Strong Hospital to be precise.  The specialists up there are getting quite a bit of press lately.  It would be good to have them look at me.

It's now Thursday and finally time for Doctor's analysis.  This visit was killing me as the nurse asked question after question.  I know she was just doing her job, but she is not who I came to see.  Enough with the under-card, BRING ON the main event, I want to see the neurologist!  Finally, he arrives. reviews the notes and asks questions about what the nurse wrote.  All the while, I’m dying inside wondering what the results are.  After minutes that felt like hours, he starts to read the report and asks if I brought the disks of my MRI.  Disks??  What disks?  Weren't they supposed to send the information over automatically?  I’m freaking out on the inside now thinking that I’m not going to get results today.  He said he had the notes and wouldn't need the MRI's but would follow-up to make sure he had a copy for the file. So I start thinking again about the list of other possible things it could be except Parkinson's.  Weird how you start to root for the incurable, degenerative disease because other things on the list are worse. "Come on Parkinson's!"   Then he says it, test results were negative. Great, I got my wish, it's the incurable one.

Up next: Time to tell and the new emotion coaster

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

A three week wait and to tell or not to tell was the question

My appointment with the neurologist was finally scheduled and it was three weeks away.  Three weeks! What the hell!  I know it's supposed to be a slow, progressive disease, but I want to know if I have it NOW.

During these three weeks, I was on SUPER observation duty.  Every flinch would be examined and documented and triangulated to see if it fit the mold of Parkinson’s.  Yeah, I drove myself a bit nuts, but things seemed to be changing, daily.  I called it symptom roulette.  Every day you woke up and you would have a different symptom from the day before.  One day your arm hurt, another you'd have tremors.  You might be dizzy or you could just be achy.  But through it all, you woke up every night for a couple hours because Lord knows you needed MORE time to wonder what's going on inside your head.  Looking back, all the different symptoms had to have something to do with being on the edge of just enough dopamine.  Here, four years into this, I have good days and bad days, but it's not the randomness like in the beginning.  Don't get me wrong, the symptoms I have now are worse, just steadier and more predictable.  Not sure if that's a good thing or not.
During that three week wait for the neuro appointment, I had my annual Managers trip to Chicago. A trip to Chicago in January, I know, I know, it sounds nicer than it really is. Basically, you're in a beautiful downtown Chicago hotel and see nothing but the inside of a conference room for the duration.  I do leave with some good information and a bit more energized so it's worth it.  As I described in an earlier post though, stress brings out the symptoms and I would be neck deep in it for five days!
Backing up for a moment.  At this point, with no diagnosis and very few outward symptoms, I chose not to tell my employer of what was happening.  I have since but who to tell, when and how I did it will be the topic of a future post.  I know this is a hot button for many so leave a comment if you would like to discuss it sooner and I'll get back to you. Or, you can read more about the topic here.   So I'm in Chicago and have to be what I call "on" from 7:30 am till 8 pm for nearly five days straight.  Usually these conferences are just three days, but with my luck, they needed us for an extra two this year.  Oh boy...
Every day was another spin on symptom roulette, but I was able to keep it together for the most part.  During one lecture the muscles in my forearm cramped.  I don’t mean just sore, it felt like the muscles were trying to twist their way out of my arm.  I stuck my arm under the table and after five minutes of intense rubbing it went away.  That evening, I was playing a card game, called horses (ask and I'll tell you about it), with some other Managers.  I won a couple of hands and had a pile of quarters that needed to go back into a plastic cup so I could carry them.  I was able to slide the quarters into my left hand but couldn’t manipulate my fingers correctly to get them to fall into the cup.  A bunch went on the floor.  I felt the Head of Engineering standing behind me staring.  My only hope was that he thought I was drunk even though hadn't had anything that night.  Weird position to be in.  Hoping someone thinks you're inebriated to hide a possible neurological disorder.  How messed up is that!  The only other noticeable symptom I had on the trip was stuttering.  Under stress I was having more and more trouble getting the words to form correctly.  VERY frustrating. 
A few nights after I got back from Chicago, I took all the kids out for dinner and a what happened next was eerie.  Keep in mind I have not shared my problems with anyone except my wife and she swore not to tell anyone.  So, we were sitting at a restaurant and my daughter noticed her brother's eye was twitching.  Both my daughter and I launched into his excessive caffeine consumption as the probable cause.  My son looked me in the eye and asked if anyone in the family had Parkinson’s.  I was stunned.  I almost lost it, but calmly asked why he would ask such a question.  Before he could really answer, my daughter jumped into describing how bad Parkinson’s is and that he wanted no part of it.  I lied – a bit – and told them how there are great meds for Parkinson’s out there and not to worry because I was sure it was the caffeine.  It was really a strange experience  and one I probably handled poorly, but I never expected that question, that night. Especially so soon with all that was going on inside my head at the time.
It’s now the weekend before my appointment with the Neurologist and I’m a bit nervous.  Not because of what he might say but what he might not.  I’ve come to grips in my own mind that I have Parkinson’s.  If he says I don’t, BONUS, I get a ‘get out of jail free card.’  My fear is however that he doesn’t know what it is and I am subjected to two years of testing while they try and figure it out.  Don’t get me wrong. I don’t WANT Parkinson’s but knowing what you have is easier to deal with than not knowing.  And, being the eternal optimist, I believe that if I do have Parkinson’s it will be on the mild side and I will be able to deal with the changes easily.  We’ll see.  Three days to D-day – (Diagnosis day).
Sunday, January 30 (D-1).  My face feels heavy today, that’s the best way I can describe it.  For year's my wife has called me ‘the Terminator’ because of my lack of emotion.  I attributed most of it to being German however I wonder how much of it might be Parkinson’s.  Funny how I attribute things I feel to an incurable disease that I haven’t even been diagnosed with yet.  But still I wonder if the Parkinson mask so frequently talked about has been a problem longer than I have known. By the way, great link for describing this here.  
I think about how, when and if I will tell people once we figure out just what exactly is wrong.  The kids will be tough; I don’t think I would tell my youngest daughter right away and probably not for a couple years if I can help it.  My parents and my sisters will be easier. I just don't want anyone feeling sorry for me.  That would bother me more.    Work is another tough one.  It could have drawbacks but I guess it really depends on how bad my symptoms get.  If I don’t shake and stutter there is no point in telling anyone yet because it's not affecting anything.
I feel really bad for my wife, Rachel.  I know she didn’t sign up for this and she’s been nothing but supportive.  I hope and pray that if this is Parkinson’s it’s the milder, slower progressing kind.  I'm only 46 but, we have many plans for after retirement and taking care of me wasn’t one of them.  Mr. Optimism keeps thinking that in the 10 years I've got before I assume it "gets bad" there will be a major breakthrough.  I can only pray.

Up next: D-day - I hope

Symptoms and the first Doctor visit

I suppose I should start this post with a disclaimer:
The symptoms I am about to describe may or may not have anything to do with Parkinson's disease.  It is called a boutique disease for a reason as everyone gets a slightly different version.  I'm just telling you what I observed.  I knew something was going on, just not what. Since then, it has been confirmed that I have Parkinson's but you'll have to wait for a later post for me to describe how. Okay, that should keep the lawyers happy - on to my hypochondria err, symptoms!

Looking back these four years since I first noticed any symptoms is interesting, well, to me.  The symptoms below plus a few others have been happening at different times or not at all anymore.  In other words, some seem to come and go while others are just worse some days than others.  It was almost like, my body was at a tipping point regarding dopamine supplies and started struggling as to what to do.  I perceived this in different ways through pain, dizziness, tremors, etc.  Pure speculation on my part but I do find stuff like this interesting.  Ya, I know, total geek, but.... interesting.

 - Sleep:  Ah, if I only knew what I was in for I would never have complained about this being a problem back then.  See, as I write this post, I am on my fourth day in a row of 3 hrs sleep or less.  I plan on writing a future blog about sleep and how much it use to mean to me.  If only I had more time in the day (or night) to write, hmmm....  Back to the symptoms.  I could fall asleep, but I was up every night by 1 am and usually up for 2-3 hours until I drifted off just before the alarm buzzed. My sleep would then cycle through the month; couldn't get to sleep then couldn't stay asleep.  Then both which basically meant up all night.  Then a few days of restful sleep before the cycle started all over again. Interesting video link here on Parkinson's sleep disturbances and some tips.

- Aches and Dystonia:  Just general soreness mostly in my arms but the weird one was every morning it felt like I twisted my ankle.  I did nothing at night but sleep (or flop around, see above) but it hurt bad until I got up and walked it off.  Went to bed - no pain.  Woke up - pain.  Weird. Thankfully that went away after a few months.   Some days my left arm felt like it weighed 100 lbs and others days like that dull ache you get after you get a shot.  My fingers sometimes are stiff and hard to bend.  When I try to bend them it's like the tendons in my hand aren’t long enough.  I can force them straight and force them closed but moving them without help is tough.

- Smell:  I mentioned this in a previous post, but it’s hard to prove that you really can’t smell. So when people would ask what smells funny I would have to fake it.  Certain smells get through like gasoline or cigarettes, but it has to be a strong odor. Then there are the phantom smells that hit you.  One smell in particular that hung around was kind of a sweet antiseptic band-aid smell. Another would be like a whiff of a garbage dump.  Totally weird because no one around me could smell this.  It would happen anywhere at any time. My guess is it has something again to do with the lack of dopamine and transporting the correct signals back to the brain.  Maybe the brain does its best to match up what information it is getting and just gets confused.   Sorry, didn't mean to get all technical on you there. Not smelling can be helpful, though.  I had to remove a dead woodchuck from under the house. I'm guessing by the reaction of my family, as they beat feet to get inside the house that the smell was gag worthy.  It looked a little rough but,  I didn't smell a thing. Here is a link on loss of ability to smell.

- Tremors: Wasn't that the name of a bad horror film in the 1990's? Once again, if I knew about shaking then what I know now, I wouldn't have complained.   But, it was new back then and definitely something different. Micro-tremors would come and go always in my left arm or hand.  I had a few tremors in my legs at night too.  I also started getting them on my face.  My lip would tremble adding to my already slightly slurred speech.  Plus, the muscle below my eye would twitch along with my eyelids.  I could feel it twitch but luckily, people always couldn't see it.  Makes you rather self-conscious, though.  I would always wonder what people thought of the guy standing in line next to them twitching like he was about to explode.

- Instability: Out of nowhere, I would get these sudden bouts of dizziness.  I'd have to stand very still until it passed or sometimes even grab onto something. Just another symptom that came and went as my body tried to figure out how to deal with the lack of dopamine.  Don't miss that dizzy feeling though; glad it was short lived.

So here I am with a list of things wrong with me and what do I do next?  Call a Doctor? Of course not!  Research them on my own so I can tell the Doc what's wrong is more my style.  So after some thorough digging everything led me to the same path:

                                                Parkinson’s Disease

At first the words didn’t seem much to me, "hey it's the same thing Michael J Fox and Muhammad Ali have.  They shake, but they are still okay, right?"  So I called the Doctor to make an appointment.  
I’ll divert here for a brief second.  This is a much larger decision than I initially gave it credit for.   Time basically freezes from that point on regarding what you have to declare health wise, especially to insurance companies.  Once you have a diagnosis you are forever labeled in the system.  Four years later, looking back, it hasn't really hurt me but I've neither changed insurance companies nor applied for any type of life or disability insurance.  Who thinks to buy disability insurance when they are healthy?  We will see how this plays out.   

          So there I am, sitting at the Doctors office, and in walks my GP, Dr. Mitchell.  The customary greeting followed by the question: “what brings you here today?”  I just blurted it out: “I think I have Parkinson’s.”  Dr. Mitchell stared over his glasses at me and stated “aren’t you a little young for that?” and the exam began.  I demonstrated the way I discovered I could trigger my hand to tremor every time.  Hold your arm straight out in front of your body and slowly twist your wrist.  Instead of a nice slow rotation, your hand jumps from position to position with fingers vibrating madly.  Turns out this test is called Cogwheel Rigidity and points towards Parkinson’s.  He asked me to tap my thumb to my finger, not a problem on my right hand at any speed, but I could barely do more than one in a row on my left.  He asked me to reach out and touch his finger then touch my nose.  When my hand rose, my finger was trembling so bad I almost missed touching his but once I got started I was okay.  We also did this test where I had to turn my hand back and forth in the palm of my other hand in rapid succession.  No problems here.  He wrote some stuff down and recommended I see a neurologist.  Wished me luck and was off.  I don't know what about his reaction triggered it for me, but I thought, “he thinks I have Parkinson's too.”

I left, sat in my car in the parking lot and read the paperwork they gave me while exiting the office and it was confirmed, Possible Parkinson's written on the sheet.  They thought I had it too.  I immediately headed to the one person I needed to see, my wife Rachel.  Now remember, going into the Doctor’s office, I already thought I had Parkinson’s. But as soon as the words came out of my mouth in front of her, I broke down and sobbed.  The first time I cried over this disease and I’m determined to make it the only time.  

Up Next: a three-week wait and to tell or not to tell was the question

Christmas and the hypochondriac

I love Christmas.  I love the cold weather, snow (I'm originally from Buffalo so go figure) the lights, music and setting into motion the plan to get everyone in the family a gift they didn't expect. It generally puts me in a good mood.  Shopping, however, can sap some of that mood fairly quick.  I don't actually mind shopping.  I'm a strategic shopper.  I plan my route and stores and I'm usually in and out quick.  I guess though, I really don't shop, I'm more of a buyer.  I know what I want and where it is. I get it. I buy it.  Simple as that. Oh, if you go with me, I'll watch you shop, but that's not me.  So here I am in a store and everyone, it seems, is happily buying gifts for each other and conversing with friends and family.  Everyone seemed to be relaxed and having a good time shopping until...time to check out. The pressure is now on to get through the line and back to more shopping.  No one wants any delays in line in front of them.  You could almost see the thought bubbles over people's heads - "Put that checkbook away lady, we don't have time for that."  "Great! The guy checking out grabbed the shirt with no tags, PRICE CHECK PLEASE!"

STRESS

I didn't know it at the time but if you want to see your Parkinson's symptoms come out just get stressed.  Medicine or no medicine you will not function as you're used to functioning.  Here is an article on that subject.

  I got ready to purchase my gift with cash and when the cashier told me the total I tried to peel off some bills to give to her.  As hard as I tried, I couldn’t get the bills apart with my left fingers.  I couldn’t move my fingers the correct way to get them to separate the bills so I could count them out.  The more flustered I got the worse it became until finally, I gave up.  I handed the clerk all the bills, smiled and covered with a comment that my hands must still be cold or something. She smiled, took what she needed and handed me back the rest. I filed that 'symptom' away for future reference.
Another clue. Sitting at my desk at work that same week, with my left hand resting, the muscle on the back on my hand, between my thumb and forefinger, started pulsing.  Nothing major, just a steady beat.  I watched it for a minute, moved my hand and then it stopped.  Curious I thought, I wonder if I can get it to do it again.  Wait for it....., yup, there it is again. It's like that one muscle is listening to its own music station and pulsing to its own beat.  Now it's got me curious, so I started to keep track of my ‘symptoms’.  I keep putting that word in quotes because, at the time, I had no idea what I was getting myself into.  Plus, as a closet hypochondriac, I was trying not to be too worried.
About the hypochondriac bit.  I never considered myself one, I just thought of myself as extra observant about how my body worked.  If something changed, I knew about it.  Sometimes I would question it, maybe look it up, but never obsess about it (like a true hypochondriac would I told myself.) I was always the one to tell the Doctor what was wrong with me based on my observations.  I have a good Doctor, who I'm sure rolled his eyes when he saw me coming the once or twice a year I needed him.  He knew that I'd have a list of my symptoms and was looking for a confirmation on my diagnosis.  I had about a 50% hit rate - hey it's better than the weather people!  This time though, it seemed different, so I made a list of everything I could think of that I had noticed and looked it up.  Here is where my life began to turn upside down. 

Up next: Symptom count and the first Doctor visit