Joe Carmona: April is Parkinson’s Awareness Month

On March 29, 2012, the United States Senate officially declared April as Parkinson’s Awareness Month. With the resolution we honor those who live with Parkinson’s.

In my opinion, everyone young and old should have some knowledge of this disease called Parkinson’s. Why? Because having some knowledge of the disease would not only help the affected individuals, but the people they interact with.

As a victim of the Parkinson’s disease, I would like to share my story. The disease is not going to go away, so I have no choice but to face up to it and try to educate the general public of this silent disease. I call it a silent disease because few people care or talk about Parkinson’s unless they are affected by it.

Once I was diagnosed, I felt angry, afraid, resentful and kept saying, “Why me?” Many questions filled my mind — what will I be able to do? Shall I continue to work? How fast/slow does this disease progress? No one could answer my questions, not even people in the medical field. There are so many unknowns, and maybe that’s why the disease is so unpublished.

As a new victim of Parkinson’s, I tried to hide my symptoms (tremors) because it causes an embarrassment to me. I worried of the image I projected to others. At the same time, people around me didn’t know how to interact with me because they had no knowledge of the disease. On several occasions as a teacher and as a sports official, I could see that students and coaches look at me differently because of my tremors. This leads to the subject of Parkinson’s awareness.

I believe if those students and coaches understood and had some knowledge of the Parkinson’s disease, I think they would have looked at me differently.

So the public needs to understand the symptoms of Parkinson’s so it can look at us with a different perspective and have an understanding of why we are projecting an abnormal or different image. The major symptoms of Parkinson’s are tremors, slowness of movement and balance. Other symptoms are changes in facial expression, writing, speech and posture. I’m in no way an expert in the subject of Parkinson’s, but I have experience with some of the symptoms and have seen them on my new friends at our support group.

So, what is Parkinson’s? Parkinson’s disease is a progressive brain disorder disease. It affects some nerve systems that control our body movements. From my understanding, there is a chemical deficiency in the part of the brain that it’s associated with and controls our nerve and muscle system. Parkinson’s affects about one in 100 Americans over the age of 60. Many people in the early stages of the illness assume their symptoms are the results of normal aging.

My doctor has worked with me and has given the correct medication to control and suppress my symptoms. Since Parkinson’s is a progressive disease, I am likley going to have to change dosage or go to a different drug. I have to trust my doctor to care and looks after my well being.

For victims who cannot take drugs or they can no longer control the symptoms of Parkinson’s, there’s an alternative. Deep brain stimulation is an alternative where electrodes are implanted into an area of the brain to control the motor movements. It’s actually two operations that are performed — one to implant the electros in the brain and second to implant the stimulator and the battery pack in your chest. You have to meet certain requirement in order to be a candidate and selected for the deep brain stimulation surgery.

I have found the best medicine is a positive approach to your condition. Educate yourself on the disease so you can understand why your body is changing. You need to understand the drugs you take and if they are not helping, talk to your doctor.

After many hours of reflecting on the subject of Parkinson’s, I came to realize I have no choice but to accept my condition and live with it. I encourage all people with Parkinson’s who have questions about the disease to attend the local support group where they are going to hear open discussions about the disease.

As a victim of Parkinson’s, I see things differently with a new perspective. I have learned to appreciate life, my family and friends. So you can say my attitude has changed since I accepted my disease. And maybe people who have some type of knowledge on Parkinson’s will look at us differently. We the victims are not looking for compassion or pity, but only to accept us and our condition.

Joe Carmona, a Carson City resident, is battling Parkinson’s disease.