Posted: Friday, April 8, 2016
The month of April was designated as Parkinson's Awareness Month by the United States Senate on March 29, 2012. With the resolution, we honor those who live with Parkinson's and raise awareness of the disease.
I encourage other victims, like myself, to reach out to the public and educate them on this silent disease called Parkinson's. Once we communicate our disease with the public, they will have a better understanding of our symptoms and the image we project.
Like anything else, once we shine the light and investigate a subject, we become more informed and have a different point of view. With that being said, I would like to shine the light on my Parkinson's disease. First I would like to give you a few facts about Parkinson's:
• Parkinson's disease is a chronic and progressive neurological disease.
• 1.5 million Americans live with Parkinson's.
• Cause of Parkinson's disease remain unknown.
• The disease was named after a British scientist named "James Parkinson" in 1817.
• Economic burden of Parkinson's disease is at least $14.4 billion a year and will double by 2040 in the U.S. only.
• There is no cure therapy or drug to slow or halt the progression of Parkinson's.
• Nearly 60,000 people are diagnosed each year in the U.S. with Parkinson's.
• The average age of diagnosis for Parkinson's disease is 60 years old.
My story, like many others who have Parkinson's, is not unique, but I hope to raise awareness of the disease.
Looking back, prior to being diagnosed, I had stiffness and loss of elasticity on my joints. I also noticed a small tremor on my index finger. My doctor prescribed some type of muscle relaxer. My joint stiffness continued and my tremors became more noticeable. My daughter, who is a therapist, looked at my symptoms and told me to get an MRI, because she suspected I had Parkinson's.
I was diagnosed with Parkinson's and I remember having many questions about it. The effects it would have on me, my family and my future were just a few of the questions. The next stage for me was the questions of, why me, how did it happen and what will happen next. I tried to hide my symptoms (tremors) from other people, because I was embarrassed of what I had. During this stage, I made some hasty decisions, like quit my teaching position and gave up officiating high school sports, which was part of my life for 30 years. I felt no one understood my disease and no one could answer questions of what I was experiencing.
Finally, thank God, I came to deal with what I have and accepted the disease for what it is. I read materials on Parkinson's and talked with other "Parky" friends to better understand my symptoms. I can now look into the eyes of that person on the mirror and accept myself.
Parkinson's is a life-changing disease and is a huge challenge not only to the victim but also to the family. It is hard to live with a disease which has no cure. The medications we take are only a bandage fix and they have many side effects. I see Parkinson's as a silent disease because there are many symptoms that are not visible such as: depression, anxiety, loss of smell, sleep disturbance, hallucination, and loss of concentration, and confidence, fatigue and pain. In the past few years, more institutions are shining the light on Parkinson's to better understand the disease. There are more studies and medications to improve the life of a person with Parkinson's, so there is hope for all of us.
With this disability, I need to focus on what I can do not on what I used to do. I need to stay active not only physically but mentally also.
Parkinson's has made me a different person but there is a reason for everything that happens to us. One of these days I will understand why I was chosen to have this disease.
By sharing part of my story on Parkinson's I hope it will create some curiosity. So shine the light on Parkinson's and be more aware of this silent disease.
So come and join the Tri- County Parkinson's Support Group shine the light on Parkinson's. For more information, call George or Mary Lou Chumbly at 671-0767 or 415-6237
http://www.appeal-democrat.com/features/family_and_friends/column-taking-on-parkinson-s/article_439fb9da-fdee-11e5-842d-933b6030e2cb.html
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