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Monday, August 31, 2015

Day 1 - What am I doing?? My road through Parkinson's Disease

I've decided to take my Parkinson's journal public.  As king of the introverts, I have no idea why.  I've read many studies on Parkinson's making people more creative. (Link to one study here).  Maybe this is how I will start to express myself now that my exterior is more Terminator-like than human.  Maybe no one will read it and it'll just continue to be me writing to myself.  Either way, I hope to entertain, challenge and inform those of you bold enough to read what I am thinking.  As promised in the title, this blog is fundamentally about Parkinson's Disease.  I can't promise I won't occasionally drift into such riveting topics as the best spaghetti sauce or what's better pie or cake. But, I do promise to keep it to a minimum.  I figure there must be 100 other blogs by now strictly focused on spaghetti sauce and I don't want to tick them off and have them start writing about Parkinson's!


The plan is to walk you through my experience leading up to and after diagnosis of Parkinson's Disease.  I also will be providing various links to articles on the topics I discuss. After we get up to date, the blog will turn into what I am experiencing now as well as useful links and information (we must have the pie/cake debate).  An example:  Did you know it's been shown there are up to 49 (update, I've found 70!) different symptoms related to Parkinson's Disease?  In a future blog, we can review them and discuss it.  Sound fun?  Okay, maybe that's a stretch but how about at least interesting? Then let's go.

The Beginning
My first recollection that something was different than normal was the summer of 2010.  I just turned 46 and life was good.  While cleaning my fish tank, I noticed my left hand would go into what I would call the ‘Mannequin pose’.  As I reached into the tank with my right hand to clean the glass, my left hand would freeze just like a mannequin.  At the time, I had no idea why, it just did. I'd clean with my arm posing there at my side at a right angle.  I could move it, use it but, if I forgot about it, there it would hang, right angled to my body... frozen.   Looking back, grasping at symptoms I guess, there were other new things. Take working on the house for example.  I have never had a problem with heights, but a few times I noticed, when I got to the top of the ladder, the hand holding the brush or sometimes my left leg or sometimes both would shake.  I could stop it, but it would soon start up again.   At the time, all I could think of was that maybe this is just part of getting older.  Little did I know this was a tell-tale sign of what stress can do to exacerbate your symptoms.    Another strange occurrence was my lack of ability to smell.  I'm sure you've seen the candle catalogs in the mail.  You know the ones, they have scratch and sniff sections to smell the different fragrances.  Well, I couldn't smell them. Everyone else could scratch the surface and identify the fragrance, but I wouldn't smell anything. It was weird. So weird in fact that I used to lie about smelling it.  "Mmmmmm, smells good" was the standard answer or the occasional "Nice!" just to acknowledge and hopefully move on.  Too many times I would walk into the house to be confronted with "smells good, right?" referring to whatever delicious recipe my wife Rachel was preparing at the time. I smiled and lied then too.  I knew it smelled good because she's a fantastic cook but at that moment she could have been boiling socks and  I wouldn't have known the difference.   I never put it together that something bigger might be wrong.  
Such random symptoms, tremor, dystonia and a loss of smell never triggered an alarm.  Knowing what I know now it's obvious to what was wrong and over the next several months I started to put the pieces together.

Up next - Christmas and the hypochondriac - putting the pieces together


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