One in A Million

The diagnoses of Parkinson’s stirs’ many emotions, anger, fear, and self- pity just to name a few. But after the shock of the diagnoses wears off other feelings and emotions replace your initial fears. These new feelings are not founded on what ifs’ or something you read on the internet; these new feelings are founded on experience. The Parkinson’s experience to put it bluntly, sucks; anger and fear are replaced by frustration and a loss of independence, Parkinson’s touches every aspect of our life.

But we are not the only victims of this disease, our wives/care giver, family and friends are all witness to our ongoing struggle to survive. It is similar to watching a car crash in slow-motion, you know how this could end and there is nothing you can do but pray. As much as we feel we are alone in this battle, many times nothing could be further from the truth. For those of us who have found support through programs like Rock Steady Boxing the feeling of fighting back relieves many of our fears. But the constant erosion of our independence still weighs heavily in our mind, this loss is a bitter pill to swallow.

Personally, I know I struggle with this loss of independence; I need help to do many simple tasks, putting on jackets and long sleeve shirts just to name a few. And that’s not counting anything to do with hand writing, which I can no longer do. My wife writes the bills, doctors’ office paper work and she even makes phone calls as I can no longer take notes. Yet through it all, she never complains unlike her husband. Yet in spite of all she does for me I still become short with her at times. My frustration with my inability to perform simple tasks and the realization this will only get worse causes me to lash out at the one person who fights the fight alongside me, my wife.  Parkinson’s has had a profound effect on her life too, it has become our disease.

I will tell you a true story, the night before Easter I decided to change the light bulbs in my kitchen. It did not go as I had hoped, and I became very upset. My wife told me to not worry about it, “do it another day” she said. I became determined to complete this project, so off to Home Depot I went and five hours later our kitchen had three new light fixtures installed. You must be asking yourself why did I go through all that hassle when it was really not necessary. I did it because that’s the type of work I performed prior to Parkinson’s, and I would not accept I could no longer perform that task. To my wife’s credit she was supportive (to my face anyway) and encouraged me even though she thought I was insane.

My point is this, our diagnoses is no one’s fault and no amount of anger is going to change a thing, especially misguided anger. Those closest to us see our struggles, and feel our frustration, they know your fight. They may attempt to act as if everything is ok, but watching someone struggle to put a key in a lock is never enjoyable for anyone. So, the next time someone asks, “can I help you with that?”, take a deep breath and think to yourself what’s more important battling that key to the bitter end or getting through that door. And if you over react just smile and say “sorry”, it means thank you in Parkinson’s.    

Written by Mark Hitechew