I am not sure how many people know what happens when this disease takes over your life.
I was not aware of the things that go on in ones life until my sister was diagnosed with Parkinson's a number of years ago.
Sleep is not something looked forward to, like the rest of us. There is no rest. There are horrible dreams (drug induced). The movement does not stop just because your sleeping. Your limbs continually twitch, or worse than that they freeze in a position that causes intense pain. Walking in the morning can be next to impossible. Most of us get up and run to the bathroom in the morning, this is not an option for people with Parkinson's. Getting out of bed can take what seems forever. Getting their muscles to work in the morning is a ritual that takes time and patience.
Doing small tasks can be an effort. Most of us sit down to a meal and eat without problems. This can be a trying time. Between the spasms in the hands and trying to keep composure, eating can take forever. Food coming off the implement (forks are used because food falls off spoons) due to tremors cannot be controlled. Eating becomes an Olympic sport. I wish it was proper etiquette to use your fingers all the time, after all they came before forks and spoons.
I was in Vancouver a few years ago and got to spend time with Debbie at her store. The things I watched her accomplish, to this day, astonish me.
I sat and watched as my sister took the most mundane of articles in her shop and turned them into the most beautiful center piece I had ever seen. The one thing that I did not know, before that, was what kind of effort it took for her to accomplish that feat. I saw her take a flower, a piece of Styrofoam, some moss, a few leaves and sticks and turn it into a work of art. During this time, I saw her moving slower than usual. She would shift her weight from side to side. She would bend and straighten. Her smile began to change. I thought this was part of her looking at the piece she was designing, to make sure everything was as it was intended to be.
NO
All this was a painful dance that takes place every time she tries to do anything. It is part of living with Parkinson's. It is the effort that she has to put forward, to accomplish even the smallest thing. The constant movement that controls her life. As I watched her looking at the beautiful flower, she stopped and looked at the clock on the wall. "Damn, she said". She stopped what she was doing and headed for the counter on the other side of the room. She dug around and ducked under the counter for something. When she emerged, she had a container in her hand. It was a pill box. She smiled and said, it was past pill time.
She had been standing working and had forgot to take the pill that needs to be taken on time. Her hands were stiffening, her legs beginning to spasm and shake. She was unable to continue her talented art, until the movement stopped. Within just a short time, she resumed her wonderful work. I was upset at what I had just witnessed. Why should anyone that is so young, or for that fact anyone, have to endure this disease?
Deb wrote a poem, one of many (part of Feelings - the face of Parkinson's), that is posted on YouTube. This is what she wrote.
No sleep
the darkness envelopes like a blanket
starts to turn to light
to look Parkinson's in
each face once again
by Debbie Hucul
I cannot believe I have such a beautiful and talented sister. I have a sense of pride that takes my breath away. Your passion is evident in the way you show your feelings towards this disease. If I had, in my baby finger, the caring you show people with this disease, I would be the worlds greatest nurse. You make me more and more proud with each passing day. I wish there was some way to show you. I love you Deb.
I AM SO PROUD TO BE YOUR SISTER
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