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BigRingGrinder last won the day on March 17

BigRingGrinder had the most liked content!

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About BigRingGrinder

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    Advanced Member

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  • Location
    Southern California
  • Interests
    Running, biking, swimming, scuba diving, flying.

    Making noise with an electric guitar.

    Playing Poker--I've got a great poker face and an ever better bluff with tremors and fumbling fingers that others misread as a sign of excitement from a strong poker hand.

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About Me

6/16/17:  Messing around to see if there is any way to add more photographs to our profiles.  Here's a test picture.  It's of me out engaging in some "wind therapy." 







My pre-diagnosis journey is a long, dark, ugly, painful story that I would love to forget, punctuated with bright spots where God answered prayers.  Not that my journey is so great now, but at least I can do nothing in peace!


Looking back, my symptoms probably began around January 2006 but I did not really care because my doctors said, "give it time, it will go away," and besides, I was still winning cross-country mountain bike races and triathlons.  When my muscle performance hit bottom and then took an even deeper dive in 2009, I began to think that possibly something was temporarily wrong.


The first person to verbalize the word "Parkinson's" was a cousin who then worked as the personal chef for a celebrity with Parkinson's.  By that time I had an idea, I just did not want to speak the word.  At the same time, I also had my doubts because the media depicts Parkinson's as a sweet, benign condition, whose patients are strong and active athletes, while I struggled to keep my feet working together to walk across a street or to find the strength to brush my teeth.


Officially, I stopped working in July 2010 because of muscle weakness, extreme muscle fatigue from minimal activity, and pain from constantly constricted muscles and muscle strains/sprains.  Unofficially, my body had checked out long before but the brain kept trying to force it to go on--with ever diminishing results.  Co-workers had also began to notice something was broken when I had to go home and lie down to recover from my physically straining day after just one-hour in my office.


A little after this, a doctor actually yell at me to "stop!  Something is wrong and you can't fix it with exercise.  It may take a few years to find a diagnosis, but just stop!"  (Still trying to prove her wrong and that exercise can help--with ever diminishing results.)


Took my first dose of the wonder drug Carbidopa-Levodopa in December 2011 because after getting kicked around the neurology departments of the leading Southern California medical universities, my local general neurologist said, "I may not be an expert, but I know enough to try something."


When my muscles began to feel a slight twinge of relief within an hour of that first pill, I became concerned it was a placebo effect because the instructions said it might take two weeks to feel an effect--IF EVER.


Plus, the instructions did not specify what to expect other than the medicine was to relieve the "symptoms of Parkinson's." Which symptoms?  What symptoms?  There are many.  What should I look for?  What should I feel?  The instructions were silent and I still have not found an answer.  All I know is that the magical pills oil my muscles and give me back a measure of muscle control.  They also have proven to a much better job of killing muscle pain than Norco or double doses of Morphine.  Just too bad its effects only last a few hours (less with activity or stress like happiness, excitement, joy, or forgetting your yoga mat on a chair in your bedroom as you back out of the garage with only 20 minutes to make the 10 minute drive to class, etc.).


My diagnosis was finally confirmed in May 2013.  The doctor said, "the bad news is that you have Parkinson's, but you probably already knew that.  The good news is that Parkinson's is not terminal and since you are young we can do some major damage against it."


Still waiting for those bomb strikes to show improvement.


More later.







P.S.  My reply to a diagnosis of Parkinson's was: "No, doc.  A diagnosis of Parkinson's is not bad news; the bad news is that Parkinson's is not terminal."