Our Stories
Sharing thoughts on living with Parkinson's through the eyes of patients and caregivers

Parkinson's Awareness Subscribe Email Print

“Dad, did you have too much coffee this morning?” I hesitantly inquired. Something was wrong – he knew it and I knew it. But he ended the conversation quickly, “Yeah, something like that.”


A month went by before I noticed it again. Three more months went by and finally the diagnosis came. Even though we had an idea of what it could be, hearing the words “Parkinson’s disease” made us all stop and reevaluate.


That was almost eight years ago. Each day, Parkinson’s poses a new challenge for my father, as it does for over one million Americans. Building model rockets for his grandchildren, creating beautiful furniture out of pieces of wood and capturing the world around him in breathtaking photographs have all been shelved due to Parkinson’s.


But what does it mean to have Parkinson's? The common answers vary from a tremor, trouble walking, shaky voice or, often, what Michael J. Fox has. Until my father was diagnosed, those are the answers I would have given. I had no idea Parkinson’s affects more people in the United States than multiple sclerosis, muscular dystrophy and ALS combined. As a family, we didn't know that one day zipping his jacket, brushing his teeth or walking around the block -- simple everyday tasks -- would prove to be difficult at times.


This month, the month of April, is Parkinson's Awareness Month. It sounds good in concept - pick a cause, something that needs attention and pick a month to make people "more aware".  The truth is that Parkinson's, a disease that affects one out of every one hundred people, deserves attention every single day. 


At Promises for Parkinson's, our mission is not only to fund scientific research, but to support Parkinsonians and their families fully.  One key to accomplishing this is to educate communities and spread awareness about Parkinson's disease.  It helps to know the initial symptoms, a tremor usually starting in a limb, fingers or hand; rigidity of the muscles; slowness in movement; changes in voice or handwriting; impaired balance; inability to steadily carry an object.


To fully understand Parkinson's, you have to know what happens within the body to cause the disease. The dopamine, or motor oil, in the brain basically dries up. In fact by the time you are diagnosed, nearly 80% of your dopamine is gone. Now we all know what happens when you don't put motor oil in your car. So imagine what happens to your body without dopamine or, the body's motor oil.  You put shampoo in your hand, but you can't make your hand move to your head to deposit the shampoo.  You want to take a step forward, but your legs aren't getting the message. Having Parkinson's is a battle every single day, a battle against yourself.


I've learned about Parkinson's by watching my father battle his body, by doing research and by talking to people affected by the disease.  Sharing stories and experiences is how we learn, it's how we become aware. If you are a Parkinsonian or your life has been touched by Parkinson's in some way, we want to hear your story. We want to pass your story on, use it to educate others, to create the much needed awareness of Parkinson's disease -- not just during the month of April, but every day.