What is it like to have Parkinson’s?

No one asks but I think that the question is there.  You look fine and sound fine so what is it like from your side?  The description most often used is that it is like doing everything under water. It is slow and awkward.  Small movements sometimes are almost impossible.  Hand writing can be like being in first grade with a giant pencil and neither you nor the pencil can make the lines go where you want. I tell myself that just because I am going slow doesn’t mean I am not going somewhere, but that doesn’t make going slow any better.

Well at least it doesn’t hurt! Truth is it does.  I am stiff most of the time, it hurts to get out of a chair, out of a car or out of bed.  It hurts because the medications can make me nauseas, and I am forever tired and I seldom sleep great. It hurts when those close to you are watching you to make sure you are ok. It is embarrassing when words don’t form right and it is hard when swallowing is so hard that the joy of food is diminished. It hurts to know that those closest to you now have the label of “care giver”.

All that said, my faith teaches me that one of the gifts of mortality is to gain experience and that there must be opposition in all things.  You cannot experience joy without understanding pain, good without bad.  PD has made the sweetness of my life all the sweeter. The love of those around, me supporting me, all the more healing. Life can be hard but that doesn’t mean it is not good.  Sometimes my whistle has a vibrato that just won’t go away.

“Anyone who imagines that bliss is normal is going to waste a lot of time running around shouting that he’s been robbed. The fact is that most putts don’t drop. Most beef is tough. Most children grow up to be just ordinary people. Most successful marriages require a high degree of mutual toleration. Most jobs are more often dull than otherwise. . . .

Life is like an old-time rail journey—delays, sidetracks, smoke, dust, cinders, and jolts, interspersed only occasionally by beautiful vistas and thrilling bursts of speed. The trick is to thank the Lord for letting you have the ride.”

Jenkin Lloyd Jones

 I thank the Lord everyday for the ride of a lifetime and the marvelous adventure it is.