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.  

I was 42 years old and newly single. I had a high-pressure job I was excelling at, and my body was in top shape. But my left hip was so tight all the time, my tennis serve was off, and I was having a hard time keeping the rhythm in spin class.  

I chalked it up to excessive exercise, or my new sports car with the heavy clutch. But then my toes started to move by themselves, which was curious. And a friend standing behind me mentioned that my left arm was not swinging when I walked. Soon I started to really have to think about picking up my left foot.   

Even though my grandmother and aunt had Parkinson's disease (PD), and I was displaying the textbook early signs, I was flabbergasted at my own Parkinson’s diagnosis.  

I found a great doctor whose treatment was heavy on exercise, and light on medication. I went to a Moving Day, A Walk for Parkinson’s, event, where I met people who were just living their lives, incorporating Parkinson's into their planning and decision making, but not being ruled by it.  

I went to the World Parkinson's Conference and saw how many treatment options were available, or in development. I started medication, and continued to live my life, just with more pills and more exercise.   

In the years that followed, I put a lot of work into my wellness to prove to myself that this wasn't a death sentence. I continued to excel in my career, make friends, I dated, I bought my dream house, I met the love of my life, we adopted a puppy and got married.  

I'm retired now, to focus on my health, and spread the word that there is life after diagnosis. It's not easy, there are setbacks. I wish we as a community didn't have to do this. But with determination, pharmaceuticals and new technology, the future isn't as bleak as it may have seemed the day I was diagnosed. 

Young-onset Parkinson’s disease (YOPD) occurs in people younger than 50 years of age. Learn more.

I was born in 1959 and at an early age, I became athletic participating in swimming and basketball activities. I swam as a teenager. I did bodybuilding in my 20s and I completed triathlons from my 30s through 50s. I have completed 18 full Ironman Triathlons.  

In 2022, I noticed a tremor in my right hand. I went to a neurologist and was diagnosed with Parkinson’s disease (PD). Slowly over the next 12 months it began its process of degenerative abilities.  

I needed hip surgery, which ended my running career. I couldn’t ride my bike because of instability issues (trouble with balance). I continue to lift weights and do stationary cardio activities.  

I have been a strength and wellness coach for the last 40+ years. As my ability to train for sports began to decrease, I found it rewarding to put more effort into training my athletes and clients. It’s been a couple years now and I am truly enjoying putting my effort into training clients.  

The Parkinson’s Foundation has helped me with resources and information, webinars, blog articles and podcasts. The material and information have been invaluable.  

My advice and my recommendation for anyone with PD is to not give up and keep moving. 

Find the Parkinson’s exercise that works for you! For virtual options, explore our Fitness Friday videos and events. For in-person classes, visit your local chapter’s webpage. 

I am a wife, boy mom of two fantastic sons, a speech-language pathologist working in a large inpatient rehabilitation hospital, and a woman living with young-onset Parkinson's disease (YOPD).  

I feel like I'm a bit of a unicorn at times, being a woman working in the medical setting with people who have neurological etiologies (some with PD) and having Parkinson's myself. Because of my professional career as a speech-language pathologist, I know what is coming my way with my own diagnosis of Parkinson's in terms of PD’s impact on speech, voice and swallowing.  

I can't unknow what I know; however, I am not scared nor deterred to keep on living my best life! 

I decided immediately upon receiving my diagnosis that I wanted to use my positivity, knowledge as a speech-language pathologist and personal experiences living with PD to help others. I immediately volunteered to enroll in a phase two clinical trial, which gave me a sense of some control over how I responded to my diagnosis and a sense of purpose.   

Beyond sharing my diagnosis initially with my immediate family, a handful of friends and co-workers, I kept my diagnosis "secret" or hidden out of fear. I was too afraid to let people know, especially at my place of employment. I was afraid others would question my skills and abilities having a progressively degenerative neurological disease, especially diagnosed in my 40s.   

However, as my symptoms progressed and became more visible, it was harder and more stressful for me to hide them. I would have to slow down, stop while walking due to painful dystonia, be cognizant that my arm was not swinging, and of course, recognize that the tremors in my fingers were progressing to my arm. I knew it was time to share my diagnosis publicly. 

I went nearly seven years without disclosing my diagnosis publicly and had no idea there was a whole online community of others with YOPD, including WOMEN!  

I work full-time and am a busy wife and mom… I had no time for social media and did not explore this way to connect with others until quite recently. After I publicly disclosed my diagnosis, I discovered this amazing online community of others living amazing lives with Parkinson’s, and felt like I'd found my people... I was not alone living with PD!   

Sharing my diagnosis with others has lifted a tremendous weight from my mind and body, allowing me to find community and no longer try to hide my symptoms. I've been met with compassion and my goal is to extend that love and my experience and knowledge to others. 

I recently began my journey as a Parkinson's Foundation Research Advocate and am an Ambassador, volunteering within my community. I can't wait to see what the future holds as I continue to serve as a Research Advocate, Ambassador and online advocate to inspire, educate and hopefully be a source of positivity for others living with Parkinson's and their families/caregivers. 

Explore our resources about young-onset Parkinson’s, Women & Parkinson’s, along with volunteer opportunities.