You may have noticed that I have not written or published anything for a few weeks now. I am having a difficult time with nasty, all time-consuming Parkinson’s symptoms. This is causing a pause in my life. The body is demanding attention and I must attend to it. I was encouraged to write about my current experiences with Parkinson’s symptoms, so here it goes.
My body is reacting to something, God knows what it is. Internally, there is a struggle and it is manifesting itself through a myriad of symptoms. Dyskinesia and dystonia. I did not know or understand these words until recently. Now, I know that dyskinesias are dance-like movements of the limbs. My toes have decided to become dancers. I cannot convince them to stop. They dance any time they want, day or night. They wiggle and twitch causing ligaments to carry the tune, twirling up the legs.
Dystonia. I hope it’s a word you never know. It is a painful tightening, and cramping of the muscles. It often begins in the feet and generally travels up the back body and lands in the neck. These are the symptoms I hate the most. The pain Dystonia causes pauses my breath. When I feel the cramping start, I hurry to begin the steps I’ve been taught to work through this. I try to stop it before it travels. Sometimes, it works and sometimes it doesn’t. Dystonia simply travels way too fast and nothing in the world is going to change that.
My entire day is spent responding to the invasive attack on my body. Dyskinesias and dystonia are maddening. They can break even the strongest soul. The recurring pulses and motions tire a person.
To keep this from taking over, I must move and be physically active several times a day to combat the pain. I take giant steps. I walk the treadmill. I walk the local parks, and I do yoga. Yoga is my favorite! All of these things help open up the body. The body, a Parkinson’s body, wants to curl into itself. It’s like your body wants to crawl into a fetal position, inside and out. You feel like you could just curl up and die.
I fight. I won’t let whatever this is, win. I fight with a large network of professionals, family, and friends. All of them offering their support. Every one of them encourages me, listens to me, and holds my hand. I could not go on without such support. I am so grateful to all of you who are a part of my network and my life. You all are there for me when I need you. I am forever grateful.
My husband, the love of my life, shows his strength during this time. He gently holds me, encourages me, and reminds me to move. He whispers that everything will be alright. I listen and know that for that moment in time, everything is fine.
Pause and breathe. That is the theme this week. I pause and breathe before taking an action. Before taking medicine, I pause and breathe. That gives me a chance to be in the present moment and check my work. Throughout my day, as I prepare to take on an action, I will pause and breathe. It helps me focus and be aware of the action or task I am about to perform. Pause and breathe. This helps me be present, at that moment, that time. Pause and breathe. We should all take this good advice, pause, and breathe.
I keep asking and hoping for a magic pill. One magic pill to make this all go away. Deep down inside, I know there isn’t one. I look to my future and do not like what I see. It looks like a life of pain and misery. So, I keep hoping and praying that one day someone will turn to me and say, hey here is the magic pill. Make Parkinson’s go away!
My pen is slowing down. Words are not tumbling on the page.
I feel some poetry coming from all the feelings, I have been gathering.
Pause and breathe, live in the moment. Hopefully, there will be peace.
Inside Parkinson's 