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