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Carrie's Story

Caregiver, Daughter, Parkinson's Advocate

The summer of 2011 will always have a shadow cast upon it. That was the summer my dad was diagnosed with Parkinson’s disease. I was shocked, scared, and overwhelmed, and I experienced the kind of disbelief many people go through when faced with a life-changing illness: That sort of thing happens to other families, not mine.

Initially I didn’t know much about the disease and I have had to learn a lot. In the process, I’ve learned that Parkinson’s affects different people in different ways. In my dad, it seems that the illness is progressing slowly physically, but I do see him changing and this makes me wonder if the changes I see are the disease or if they are simply age-related. My two young daughters adore their grandpa. I love to watch them interact with one another. During these times, I wonder how long he will be able to keep up with them, and this thought scares me.

As part of my process of dealing with this illness, I decided I wanted to raise awareness of Parkinson’s disease. In honor of my dad, I got involved with the World Parkinson Coalition (WPC) and started an awareness-building project in my school. With the help of some of my students, we built a larger than life version of Parky, the Parkinson’s Raccoon, a symbol of hope for those who live with the disease. Initially, I didn’t realize how many people this classroom project would touch. I thought of it as something nice to do for my dad. But as Parky grew, so did the curiosity of all those who came in contact with him. Suddenly I found myself talking about PD almost every day, explaining who Parky is, what Parkinson’s disease is, and the work of the World Parkinson Coalition.

My students and I have had the honor of talking with two news stations (KGW and KATU) and the Portland Tribune about our project. Promoting awareness of Parkinson’s disease has been an amazing experience. It has also brought my dad and I closer together. He is so proud and honored that I got involved in such an amazing project with him at the heart of it.

I can’t say I’m no longer afraid of Parkinson’s disease. I worry about my dad. However, through the experience of building Parky, I’ve met so many amazing people I wouldn’t have otherwise and this has given me hope. There is a community of people out there going through the same things we are. Together, we can make a difference. We are Parkinson’s.

Carrie Berning, Age 39, USA

Loving Supporter

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