My PD Story

I remember seeing my first tremor in my right hand at the age of 10, and my gait felt different. I always wanted to understand what was happening in my body. 

I was diagnosed in 2002 at the young age of 25. Today I'm 48. I've been battling Parkinson's disease (PD) for 23 years.

I’ve lived with Parkinson for many years, but I never stopped looking for answers.

Ever since being diagnosed I wanted to know more and more information about my Parkinson’s. This is me. I found the Parkinson's Foundation because it has a lot of information, and many resources. From providing solutions to having a lot of information and always being available on Parkinson.org. 

I found out the Foundation was doing a genetics study on TV. So we found PD GENEration: Powered by the Parkinson’s Foundation online and signed up to participate. When I learned the Foundation was running this study, I knew I wanted to be part of it. I was motivated to participate simply because I wanted to learn more about my Parkinson’s. Participating was a chance to better understand my own story.

My PD GENEration experience was very, very easy. No problems at all. I filled out my name and the form online, and then the Parkinson’s Foundation sent me the at-home test kit a week later.

After receiving my results, I found the genetic counseling session to be very interesting and validating. I always thought the reason I had Parkinson's disease was environmental, because my parents worked as farmers in the 1970s. I always thought we were exposed to chemicals linked to PD. 

The results surprised me. When I learned I carried genetic variants related to PD, I was shocked. I never imagined I was carrying this information with me since childhood. 

Having real answers has changed my perspective about Parkinson’s disease. PD GENEration opened a door to knowledge I never had before.

The surprise was that out of the seven main PD-related genes they tested for, I tested positive for two. So basically, the geneticist explained to me that I carry two Parkinson’s genes, and that left me thinking “Wow!”

It feels good to know new information when it comes to my Parkinson’s. I now have valid documentation that proves that I am genetically linked to Parkinson's.

For anyone living with Parkinson’s, I highly recommend participating in PD GENEration. Why not learn more about yourself? About your Parkinson’s? 

I think this study is especially valuable for the PD community because in our Hispanic culture, Parkinson’s research doesn’t always reach us or reflect us. To often, a diagnosis is where the PD journey stops for many. A doctor tells you it’s Parkinson’s and we don’t do anything else. 

As Hispanics, we need to take part in studies like this. Our community deserves access to information and opportunities like PD GENEration. Participating in research is raising the Hispanic voice in research.

PD GENEration was a good experience for me. I received good news — the answers to the questions I wanted to know about my Parkinson’s.  

Participating in this study had an impact on my family. I have two daughters, and now I'm thinking about their future. Participating wasn’t just for me; it was for my family. I feel that participating in research like this today opens doors for future generations. 

Research is hope.

Read Ian’s story in Spanish

Testimonials provided by trial participants are personal experiences and do not necessarily represent the views of the trial sponsor. They are not a substitute for medical advice, and the results of the trial may vary based on individual circumstances. Always consult with your healthcare provider before making any medical decisions.

By joining PD GENEration study, participants can discover new knowledge about their genetics, understand their family’s risks and help benefit generations to come. Learn more and enroll today.