From the mind of a Parky

To have Parkinson’s

To have parkinsons’s is to be misunderstood constantly.  Oh you’re stiff, I’m stiff too.  Hey why don’t you smile?  Oh you need breaks and get tired…same here.  The thing is, it’s NOT the same.  In the beginning, when the symptoms are mild, it’s hard to argue that the small irregularities are not normal.  But then, when the fatigue gets so severe you feel sick.  When that feeling of weakness in your leg makes it difficult to walk most of the time. When the anxiety washes over you in waves of despair, only to disappear as soon as it had come.  When the brain fog prevents you from thinking clearly and your voice fails you consistently at the worst possible times.  When you LOOK fine, but you feel terrible.  Then you know for certain that SOMETHING isn’t right.  You find yourself questioning your own sanity.  This is Parkinson’s.

To have Parkinson’s is to find yourself swinging between times where you feel great and can move well and times you feel bad and have trouble moving.  During the “good” times, you find yourself in an almost panicked state to get things done before the next shutdown.  It’s a weird feeling….you feel great now, but you know that sooner or later… almost subconsciously rush to DO to MOVE to LIVE…while you still can…As you feel your body…and sometimes mind beginning to slow, to lag, to not respond, is when the icy grip of depression can take hold if you let it.  It can take tremendous effort to fight it off. 

There does seem to be a silver bullet that keeps the beast at bay…. activity that is novel or in some way engaging. There is much evidence in my life that I have grappled with this unseen foe for some time. Also exercise.  Exercise is like the great antidote, providing a refreshing respite from the grip of the beast.  Unfortunately the results are relatively short lived.  Still to feel normal even if for a short time, this is everything.  I’ve always had trouble focusing on activities that I couldn’t engage in. I believe this has something to do with my deficiency of dopamine, a result of Parkinson’s.   I know I know….everyone focuses better when they’re interested.  But I believe my ADD is directly related to the unwelcome guest.   And that’s one of the most damning things about the disease, where is the delineation between me and the disease? Unfortunately the answer is immaterial, everything that makes us US is the result of chemical processes largely outside of our control.  Parky’s understand this all too well.

The bright side of Parkinsons. The result of being the owner of a body that doesn’t work right?  Endless humility.  I can’t even trust myself to be able to walk across the street without stumbling.  Oh the humility.  Also compassion.  There is much suffering in this world.  To have Parkinson’s is to have a special kind of understanding of suffering.  We recognize it, and we sympathize with it.  We also tend to be forgiving as we have had to learn to forgive ourselves.  Finally, gratitude.  This becomes ingrained in your psyche when you regularly struggle. 

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