- by Carol B. Meenen
Basically, I consider myself to be shy. I'm a very private person. I live my life like anyone else would except that every now and again, I talk to people about it. And what I am out there talking to people about is my fight against Parkinson's disease, my motivations to keep going and how I deal with the disease every day of my life.
I was diagnosed with Parkinson's disease fourteen years ago. I started to have a lot of stiffness in my back and decided to see an orthopedic doctor. Noticing my slight tremors, the orthopedic doctor referred me to a neurologist, Dr. Richard Hull, who diagnosed me with Parkinson's disease. I really did not know what I was going to do.
I had spent most of my life living in Alabama, but had also lived in Germany for 3 years while my husband was deployed there with the U.S. Army. I had been a U.S. government employee and a volunteer with the Red Cross. Suddenly, all of those wonderful experiences seemed dwarfed by the realization that this disease was going to take control of my life. But after a lot of crying and a lot of asking "why me", I knew that the better question to ask was "why not me?"
l had always loved helping others - friends, family and even complete strangers. Now, I knew that I had the opportunity to help others cope with their Parkinson's disease while ultimately helping myself. It is very fulfilling to meet people who have the condition and to hear their stories. Some of my activities that have helped me to help others and cope myself include:
- Attending at least one support group meeting a month
- Finding the drive to take part in clinical studies concerning Parkinson's Disease treatments
- Being very involved with the Parkinson's Action Network as the Alabama state Co-Coordinator
- Traveling throughout the Southeast to speak before various Parkinson's disease support groups
- Organizing fundraisers for Parkinson's Disease research
- Lobbying Congress for research funding for the disease
This drug has been so helpful. When I first took it, it seemed to kick in after about 10 minutes. I had never experienced that before. Now, after taking PARCOPA for over a year, I talk to many people at conferences and over the Internet who share my same symptoms. Sometimes people are so surprised to hear that there are choices out there for them, that they can choose different ways to take their medication.
I am so grateful that my doctor let me know about my options. I'm so much more at ease. I have started singing in front of people; something I would never have done in the past. Believe it or not, this disease has helped to bring me out of my shell. When I was younger, I was always shy and tongue-tied. Now I have all the nerve in the world. I truly believe it comes down to working hard, making yourself happy, and hoping for a cure.
If I have anything to do with it, that cure will come soon. But until then, I will continue to attend meetings, write poetry, help out friends and every once and a while, sing the national anthem in public. Also, I have written a poem about finding a cure for PD, entitled "On The Horizon." This poem was published in a book of poetry compiled by the World Parkinson Congress that convened in Washington, DC during the month of February 2006.
I will also continue my constant battle with PD and live my life to its fullest. I am an Army wife, and a retired US Government employee after 30 1/2 years as a Management Analyst. I have been married to my husband Dan almost 36 years, and we have two wonderful sons Robert English and Bryan Meenen. I also have an adorable Granddaughter Sydney Lynne Meenen. My elderly Mother lives near me; and when I have a good day I try to help care for her--she requires constant care most days. Currently, I have been selected for DBS surgery at UAB Hospital, Birmingham, AL. I have completed numerous tests for this procedure and plan to have the surgery in January 2007.
Poems by Carol B. Meenen
ON THE HORIZON
The highest degree of down time and dread
Comes with the night when we are alone.
We must come to grips with this pain,
And try to live our precious lives again.
We have the chance to help find a cure,
But just how and when we are not sure.
So let's all join forces and work together,
For the good of mankind and PD followers.
If we could only revitalize our worn bodies
And rid them of this dreaded disease,
We could all be comfortably happy
And most definitely live well and free.
We live through each phase of the pain
To always find there is more we may gain.
We all are supportive and love one another,
And hope the cure will be on the horizon.
Carol Meenen with friend Gary Boyd
THAT OLD PARKINSON
What a shock it was when the doctor told me.
You have the dreaded disease called PD.
My Mother was with me and we both cried.
I thought to myself this is nothing to hide.
So from that day forward I made a sincere vow
To do all I could to find out why and just how;
So many of us are diagnosed with this disease
Called that old parkinson if you please.
We suffer it together and give our all
To help each other with a quick phone call.
We answer questions and compare meds,
And some of us eventually shave our heads.
We have DBS surgery in hopes to cope
With this terribly debilitating disease we know
Will never go away, because it is here to stay.
That old Parkinson is with us every day.
Carol Meenen spending time with friends
at a Parkinson's event in Arizona
I WANT MY LIFE BACK
I sit here alone waiting, thinking and hoping
That somehow I will find some comfort;
And hopefully stop all this terrible moping
Cause it is a very miserable existence.
We live with Parkinson's or we quit.
It is definitely a terrible cross to bear;
And we do not know who or when it will hit,
So we try to help each other cause we care.
We all make plans to take action on our own
To live our lives and become well known.
But, we definitely must think positively and try
Since some of us are too slow and very shy.
Now if you want your life back it is a must
To work hard and develop love and trust;
And helping find a cure is really a must--
Working side by side to do it or bust!!
