Share Your Story

by Lexy

Hi, my name is Lexy. I am 13 years old, and my dad has Parkinson’s disease. I don’t really know what to write in this essay, but I think it’s important that I share my story. I have a firsthand point of view on Parkinson’s; my dad has been living with early-onset for a while now. I found out around December 2009, and since then it’s been pretty hard to talk about it. But I think I’ll tell you my story.

For a while now, I’ve been noticing differences in my dad’s behaviors as well as movements. He had always told me about his football injury from high school, so I assumed it was bothering him. I didn’t think much of it, until he started getting very angry all the time, and wasn’t even able to buckle his seatbelt every once in a while. We got in argument all the time, and I wondered what could be making him so upset. I considered looking to see if he was on medication, checking his computer, anything to figure out what could possibly be going on. Finally, one day we got in a huge argument (over something completely stupid, I bet) and he decided he was going to tell me what had been going on.

I didn’t know much about Parkinson’s disease, but my dad did a great job of explaining what was going on. No, he won’t die from it, but he will die with it. Yes, it makes it hard to move and sometimes speak, and I should let him finish. In a way, I felt special to know before many of his colleagues and a lot of our family. But it was difficult for me to carry this alone for such a long period of time. It began to make me sad, and even angry. Why did my dad, of all people, have to be diagnosed with something like this? He didn’t deserve it. He still doesn’t, and never will. But in a way, I think it has made my bond with my dad a whole lot stronger.

My dad is an extremely bright cardiologist. He studied at both Harvard Medical School and Case Western Reserve University. He knows more than most likely ninety-nine percent of the people I know, if not all of them. And it kills me every day that he can’t put all of his time into work anymore, like I know he loves to. He does continue his work from home, but I can tell it’s not the same. I wish there was something I can do. Unfortunately, there’s still no cure for Parkinson’s. But I pray that in my lifetime, or even better my dad’s, a cure will be found.

I recently began telling my friends about my dad’s Parkinson’s. They were and continue to be incredibly supportive. I am so lucky to have friends who, although they don’t all understand what I’m going through, are willing to listen and help me through this. I also have my family, who I sometimes need to help out as well. This is a hard blow to all of us, and I hope that I can be supportive when my family needs me.

I know living with this disease can’t be easy for my dad. He’s taking a leave from work, although is going back part-time starting Monday. I can’t say it didn’t scare me when I hard the words “part-time,” but then I realized it also means that I will be spending much more time with him, something that I’ve always longed for. Because he’s a cardiologist, at times my dad would be at work day after day without even coming home. No he really gets to watch and help me grow up. Now, we can blast music my mom hates in the car together. We can go out for sushi. Most of all just enjoy each other’s company. That is one thing I really can’t wait for.

This essay was written as part of a contest held during Parkinson's Awareness Month 2010 by PDF CRLI graduate Doug Bahniuk. Thank you Doug and contributors for sharing these stories!