The subtle and not so subtle, maddeningly confusing world of Parkinson’s

I’ve heard it said that every Parky is a “Snowflake”, in that we are each unique.  Well, let me give you some details on this “Snowflakes” particular manifestation of this wretched disease.  I know some of this is a bit of a rehash of some things I’ve already discussed but hopefully someone finds this interesting.

First off, all of these symptoms started off veeeery subtle.  But they progressively worsen. 

My first symptom that I can recall was in my early 20s.  I found that after my runs (I once was a decent runner) my foot would get stiff and hurt.  I didn’t know it at the time, but the cause of this was that my brain was not producing enough of an important neurotransmitter called Dopamine. Parkinson’s Disease.  The result was that the muscles in my lower leg and foot were not getting the proper signaling to tell them what to do.  Parkinson’s typically starts on one side of the body and eventually affects both sides.  The disease is progressive, which means what started in my lower leg and foot would spread. 

So fast forward almost 20 years.  For me, thankfully Parkinson’s progressed very slowly.  But progress it did.  After having had Parkinson’s for approaching 2 decades, but prior to getting proper treatment I was in a world of pain.  I don’t know exactly why it took me so long to get diagnosed, lack of awareness, the relative rarity of it in one so young (though come to find out, there or plenty of others), or just plain stubborn bullheadedness on my part, but I was in bad shape.  Honestly I recall being so wrapped up in work and family life that I simply didn’t have time to pay attention to it.  But by bearing the full brunt of the disease for so long I got a good look at the affect Parkinson’s has on ones body and mind. And I must say that it goes something like this:

starts out as a subtle pest

to being a mild annoyance

to making you uncomfortable some of the time

to making you uncomfortable all of the time

to making you absolutely miserable. 

Not to be morbid but from what I’ve read, the final stage is that you are bedridden unable to move.  Aaand I can see that.  I was well on my way.    That is, until I got treatment.  Now I’m great.  In fact, I’m so great it makes me wish I hadn’t had it for so damned long before I got treatment.

I could be wrong, but I think this is one aspect of my Parkinson’s experience that is different than many if not most other people with Parkinson’s.  Just how long I dragged my ass through life wondering what the hell was wrong with me, but not really seeking answers in earnest.  I think most people are smarter than that.

So you might be wondering, what is it like to have Parkinson’s?  Well, let me describe what it was like just prior to my “treatment days”.  I’ll describe it as if you were me.  Imagine you’re stiff.  In your shoulder, your arm, your hip and your leg.  All on your right side.  But this is familiar to you.  In fact, you’ve dealt with this for so long, you have developed a “treatment” for it that seems to chase away the stiffness.  Movement.  Exercise.  Doing something, anything, just not sitting still.  In the past, it has always seemed to limber you up, help you move, and improve your mood, which for “some reason” is often low.  Only now, when you try to move it hurts.  You see, your leg feels weak. It’s not real weakness.  The strength is still there, it’s just that the muscles don’t move right.  They don’t get the proper signals.  This is maddeningly frustrating to you.  When you try to walk, your right side does not keep up with the left so you’re literally dragging the right side along.  This is an inefficient and uncomfortable way to walk.  Over time, your body had adjusted its mechanics to try to compensate for the laggy leg by getting a little extra momentum to the right leg by hiking the right hip to propel it forward.  Over time these improper mechanics have long since make walking painful and awkward.  In fact, you have compensated for this weird weakness for so long that now you have bad muscle imbalances.  They make you feel out of whack, almost as if you were being twisted out of shape.  This causes pain and discomfort in your back.  To the point where you cannot find a comfortable position.  So it seems, your tried and true “treatment” is no longer as effective. Besides, when you work out you get terribly painful cramps, particularly in your feet. You try to “treat” your ailment in other ways, perhaps by immersing yourself in work.  But as you reduce physical activity because it is so difficult to move, your mood gets even worse.  And you get even stiffer.  You have a terrible sense of foreboding, deep down you know something is terribly wrong because you are slowly becoming more and more stiff, miserable, unable to move, but yet you have no idea why.  Where once you could multi-task all day at work, then go home and be a good parent and husband, now you can hardly focus at all.  Your right arm feels detached, numb.  Almost alien to you.   You notice that you use your left arm for everything these days.  You try to force yourself to use you right arm but it’s SO tired.  And you have lost all dexterity in your hand to the point it almost feels like mud.  You feel extremely anxious, all the time.  On the verge of a panic attack about 10% of the time.  You feel unmotivated and you don’t really want to leave the house because for one thing being constantly in pain and stiff sucks the life out of you and your incredibly tired all.the.time.  Problems you feel you have dealt with forever, such as brain fog, balance problems, facial masking, slow, quiet speaking, have become even more difficult to deal with.  Simply standing in the kitchen is difficult because you keep almost falling over. In short, you are locked in a battle to the death with your own body, and you are losing.    Each day is your own personal hell.  But you look fine.  Welcome to Parkinson’s.  

So there you have it.  Once I started proper treatment, I started to improve dramatically.  Treatment includes medication to replace dopamine that my body no longer produces on its own.  This allows me to move and exercise again.  Healthy diet, stress management, and a good attitude are all important parts of the treatment.  I started treatment over 2 years ago and I think I’m still improving.  This I believe is in part due to the exercise gradually undoing the muscle imbalances that I had accumulated over the many years of unnatural walking mechanics due to Parkinson’s.   

So all in all everything is great.  I still have many challenges and will surely face more challenges in the future.  But for now, how many 40 year old’s can say they actually feel more energetic, vibrant, and alive than they did in their younger years? 

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