You are a great mystery, Where's Colombo, Where's Mr Monk when we need them? We read stories about Your effects. Stories about side-effects of medicines, compulsions, dyskinesia, dystonia, freezing, falling and the list goes on. The unfairness of Your random destruction of the mind, body and families. The ugliness of this destruction. The blossoming in recent years of movement disorder specialists, cognitive disorder specialists. Teaching hospitals to some seem the best, to others no. (One side note about teaching hospitals to consider, more mistakes are made in them than other hospitals. Makes sense you're treated by those just learning. Yes there are heads of departments to catch those mistakes, however the mistakes are made then caught.) It's a personal choice and whatever One feels are best for them they should go with it.
Yes My constant companion Parkinson's Disease, 40 years ago written about as being the most understood of movement disorders. 25 years ago it was said with funding the cure would be found in 5 or 10 years. Yet you are still here with me and many of my friends.
Parkinson's Disease you are both my arch enemy and friend! What a statement! You struck Me in the prime of life I was 33 years old! You attacked and conquered my body! Through denial I was able to for years make you live with me, slowly you turned the tables and made me live with you. You, my enemy, un-planned my future, You stole my dreams and aspirations. A hard fact to face at any age! But through this You taught me there are other goals to try to reach. Other facets of life that are important.
You remind me of a story from my youth, of the four blind men who come upon an elephant. One touches the trunk and proclaims it's a large snake, another feels a leg and corrects him, it's a tree, still another feels it's side and says no this is a great wall. Lastly the fourth grasps it's tail and announces all wrong it is a piece of rope! Separately You are tremor or slowness of movement, upset balance and gait, a plethora of symptoms. But put together you are an elephant! You trip us up, constrict our bodies, block our way and stand impassable.
You daily remind me what I've lost, I'm not the round peg anymore, at times with medicine I might appear to be round but at best I'm oval. Time and time again as friends try to get back to round you remind Us we can't. No matter the hammer used, gene therapy, dbs, stem cells, if it works on one symptom another takes it's place, stop the tremor you steal the voice etc, etc. You have taught me about frustration. Boy, have you taught me! Let me tell you what I've learned. I've learned frustration is intensely personal. I've learned frustration is ego connected! "I" want to do this! I want to still be able to ....I.I.I. I can't stop my tremor! I can't do what I wish. I can't impose my will to overpower you nor can I use it to counter the symptoms of you Parkinson's Disease. Frustration is linked to the selfish little child I bare in me! Frustration is my little inner demon (more fitting a description than child) throwing a tantrum. I have learned that it is at times ok to write out my frustrations but along with that it is not ok to use others frustrations to justify venting mine upon others. I've learned that because others too vent their rants, they in no way should be taken as validation for in frustration being mean to anyone else. I've learned in life We all carry problems inside ourselves and we never know how a harsh word will land upon those hurts.
This is turning into a lengthy letter to you Parkinson's disease so I'll end up shortly. You have taught Me to pick my fights, energy spent on little nagging gripes is energy that may be needed later in the day. Spend each day as if it were the last to enjoy the things you're doing that day. Every day might be one's last but with you present to remind me I try to take nothing for granted! True you struck me in my prime but you taught me I'm still useful. I have reached and made friends that if healthy I never would have met. I could go on and on but if anyone is still reading this they are probably praying for the end so...I'll ask You a couple of questions my Parkinson's Disease; When You struck me did you think I'd learn so much, did you know I'd be a worthy foe? Did You in your wildest dreams ever believe after all these years I'd thank you for lessons learned?
So My friend and foe Parkinson's Disease we now return to battle! Both with a better understanding of each other, be on guard I'll try to thwart you at every turn as you will me! In the end I hope I will be judged a worthy opponent.