My PD Story

Since I've had Parkinson's disease (PD), I've learned that there's not enough research going on within the black community for people with Parkinson's. Simply put, we’re different, our genes are different. Our genetic make-up is unique compared to white people and other backgrounds. Which is why I signed up for the Parkinson’s Foundation genetics study, PD GENEration.  

I signed up for PD GENEration at Rush University Medical Center, a Parkinson’s Foundation Center of Excellence. Participating was simple. I went to Rush, where Stacy took some blood. We got four tubes of blood. Two of them went to the Parkinson's Foundation where their PD GENEration lab will complete the genetic testing specific to Parkinson's. The other two tubes go to the NIH where they're doing a study to better understand what Parkinson's and genetics looks like. I asked Stacy if I would walk the blood samples to the lab with her, where we submitted them together. 

I find it exciting that the PD GENEration study looks at genes from black folks and compares them to genes of all other races, and that researchers will use this information to see if we can find out what particular genes affect us. Ultimately, this study help us all try to deal with the Parkinson's a little bit better.  

I signed up for PD GENEration because I want people living with Parkinson's, and those who know somebody with Parkinson's, to know that you can participate in research. Participating in research can help us see what's going on with ourselves. We're just trying to make life better for the folks with Parkinson’s that come after us.  

We don't expect to solve the issue of Parkinson’s right away, but we do expect to get enough research underway that involves us — this research is for us.  

A genetics counselor will call me to discuss my genetics test results. They’re going to let me know what they discovered in that test. I’m looking forward to completing the PD GENEration life cycle as I continue to fight this disease.