Dear Parkinson’s Disease,
Please be kind to my family and me. We did not really extend an invitation to have you come into our lives, but without any manners or notice, you determined you would enter our world. If you insist on staying with us, and we have heard it will be an extended stay, how about moving in quietly, being courteous enough to give us time to adjust to you.
We have heard that you cause a lot of shaking and tend to stir up trouble for those things that have always been so easy for us to do. It seems we’ve learned that first you rattle one side of the world we know and then go on to affect the other side. I looked up information on the word “termite” and found that it reminded me of what I’ve heard about you. It appears you work slowly, but destructively, and you settle in without invitation. You are not a pleasant guest and are often undetected, hiding your presence until quite sometime after your arrival. When you are detected (like some thief that surprises us, hidden quietly holding your breath until we catch you as a slight gasp escapes your mouth and we recognize your presence), you don’t run, but instead hold us captive. We are hostage, your hostage, and you care not who we are, how old we are, that we have family or loved ones that need us. You hold us tight and refuse to let go.
Sometimes you are courteous and allow us to move freely, believing we can keep you around without much disturbance. You fool us into believing that you might let us go, or that you might decide not to do damage. Yet in reality, you have no plans to leave. You are quite settled and focused on mapping out a plan to slowly take away our freedoms, perhaps one at a time, or many at once. You are evil in that you change your mind quite frequently. It seems just when we think life is fine again in our home, our salvation and comfort against the harsher elements of life, you reappear, reminding us that you are going nowhere, and you will decide how the game is played. The rules are loose, very loose. You alter the rules at a whim and surprise us at the most unexpected occasions.
You create so much havoc. Many times you make parts of our bodies shake without leaving us any control over these shakes, or you have us walk in a slow shuffle, or even make us propel suddenly when walking in a quick rush. Sometimes you hinder our gait and balance, making it easy for us to fall. With you, we might tend to lean to one side, making others around us think we are drunk. They glare at us as though we must have arrived from another planet. It is though you play an awful joke when you make our handwriting so tiny that even we can have difficulty reading our own words, and you love to soften our voice or make us mumble as our loved ones try to get the words out for us. We hate that and want to say exactly what we are thinking. We have not lost our minds, but our loved ones, with their best intentions, believe they help us finishing our sentences or telling us what they thought we were going to say. Oh, and how about when you make it hard for us to swallow and we find ourselves choking? Sometimes, we even need to have our liquids thickened in order that they not go down the wrong pipe causing aspiration. Aspiration pneumonia becomes something we must be cautious of, if we have these swallowing issues. That brings me to the new vocabulary we get to learn that includes words like “aspiration,” “ Slowness of movement.,” “Abnormal, involuntary body movements that can appear as jerking, fidgeting, twisting and turning movements; frequently caused by dopaminergic medications to treat Parkinson’s.,” “gait,” and all those drugs that have names and side effects that are as ugly as you. You can make it impossible for us to remove that bottle cap or open a jar. You may antagonize us with even the simplest task.
When you are being really evil, you take all our strength and even walking becomes difficult. You take our dignity and make it so hard for us to get out of our beds, get to the bathroom, or shave and do our activities of daily living that, before your presence, we actually took for granted. We no longer take anything for granted.
Parkinson’s Disease, it is sometimes suggested you are a gift. Sure, you have taught us patience. You have opened our minds to see that we must find humility and humbleness, not such bad things to learn. You have made us know we may need to rely on others, but that, in turn, has allowed us to see how special our friends or loved ones really are and that they are there for us. You make us appreciate the smallest things, such small things they never entered our thought process before you and now we get it, we get the word “appreciate,” in ways others may never know it.
So, as some like to see you as a gift, we still want to honestly say, we would rather not have these kinds of gifts. We would much rather regain the old world we used to know. We would, in a heartbeat, give up our shakes and shuffles, struggles with balance, voice and swallowing, dependence upon others, and the many other difficulties you present to us. We do not really want you to be part of our lives.
However, you have arrived and now we must figure out a plan that works for the both of us. We will not allow you to be us, but will have to make room for you. We are going to be selfish here and try to give you as little room as possible. We are determined to fight you all the way and try to see you as you really are to us. Oh yes, we have to accept that you will drag along with us, but we shall not hold your hand and will remain determined to make you as little a part of us as possible. We will keep our bodies moving, stretch them when they are most rigid, and pretend our shaking is the movement to a beautiful tune we are listening to, especially when we are shaking the hardest. We will shout out what we have to say, so that our voice does not go quiet or become difficult to understand and see the delight at anyone listening to us that they hear us with clarity. When we walk a little off balance or lean to one side, we shall smile at any of those who might stare at us and remember it matters only that we know we are not drunk and we are still whole. Our heart is unable to be touched by you and it beats smoothly like it always did and we are made of love. You cannot penetrate this, so we can secretly laugh at that which you cannot affect…and you thought you had all of us. No, we will not allow it.
If you become too difficult and we need help, we will look into the eyes of those who share their time and strength to help us, and say, “thank you” and “we love you.” We shall not resist that which makes our lives easier for us. We shall not resist letting those who are there for us know that we appreciate them. You will not take our ability to be polite and gracious from us. You cannot have everything, whether you want it or not.
Soon, Parkinson’s Disease, there will find a cure for you. The world is working on this and they are working hard. We have great technology now and one day soon, as we watch you shrink and disappear, we shall throw a celebration. We may even have fireworks. Regardless, the celebration will be like no other and your selfish acts of thievery will be ended. Parkinson’s Disease, you are so cruel, and you will no longer be able to steal again like you have for so many years and from so many people. You have stolen from the young and old, rich and poor, every race and ethnicity, and every religion, all without discrimination.
There will be a day when we can say good-bye to you. Until that day, we are fighters. We have learned to fight you. We will always work to make your presence in our lives difficult for you. We will stay strong.
We live on Earth. We know love. We have families and friends. We are never alone, even if we have only nature. We are able to hear birds chirp, watch leaves fall from trees before a cold winter or return to the trees when the seasons change. We have streams, rivers, oceans, beautiful blue skies, mountains, flower-covered valleys, butterflies, and so much more. We have gratitude for the magnificence of all that surrounds us.
Parkinson’s Disease, you shall never own us. We will never give in to you. Never. We shall be joyous at such time that you disappear.
Linda Giorgilli Rice's father was diagnosed with Parkinson's and Linda was his caregiver until his death in 2009. She currently advocates for Parkinson's awareness and is writing a book about her experiences caring for her father.