A Walk That Changed Everything

While on vacation in August 2010, my wife Mary and I had just finished a walk when my left hand began shaking. Mary insisted I go to the emergency room (ER), and after an examination, the ER physician attributed it to stress.

Yet back home, the tremor in my left hand persisted. I also began dragging my left leg when I walked, and my left arm didn’t swing when walking. I managed to secure an appointment with a neurologist about two months later. 

After several rounds of tests, he told me, “I think you have Parkinson’s.” He referred me to a Movement Disorders Specialist at the University of Maryland, who confirmed that I had Young-Onset Parkinson’s Disease (YOPD) at age 46.

Taking Control: My Four Pillars

After the initial shock, I decided I was going to take control of my Parkinson’s journey. Drawing on my background in science and clinical research, I spent two months reviewing clinical studies on Parkinson’s and exploring the resources available on the Parkinson’s Foundation website.

From that research, I distilled four key pillars I would focus on to live my best life with Parkinson’s:

• Exercise: Daily aerobic activity, strength training, flexibility and stretching, and balance training—all grounded in Parkinson’s Foundation recommendations.
• Nutrition: A consistent, healthy eating plan to support overall well-being.
• Optimism & Mindfulness: Maintaining a positive attitude and practicing mindfulness to navigate daily challenges.
• Social Interaction: Staying connected, joining a Parkinson’s exercise group at my local community center and building new friendships.

Giving Back: Teaching, Research, and Advocacy

Living an exceptional life with Parkinson’s, I felt compelled to help others and share what I had learned. I began presenting to support groups but still felt I could contribute more. 

When I came across the Research Advocate role on the Parkinson’s Foundation website, I knew it was the right fit. I completed the training and became a Parkinson’s Foundation Research Advocate in September 2024.

In 2024, I learned that three of my former neighbors had developed Parkinson’s. For 20 years, I lived in a neighborhood just one-quarter of a mile from a golf course that had been built and opened during that time. Nearby farm fields grew corn and soybeans. Strikingly, four households within a small, concentrated radius—mine included—all had someone develop Parkinson’s.

This felt like far more than coincidence. After researching possible causes, I found that people living near a golf course are twice as likely to develop Parkinson’s as those who do not likely due to the pesticides and herbicides used to control weeds and insects 

I learned that one of those herbicides called paraquat is linked to an increased risk of developing Parkinson's. Paraquat is banned in more than 70 countries, including the European Union and China, yet it remains in use in the U.S.

This information drew me into public policy advocacy. In February 2026, I joined the Parkinson’s Foundation and other advocacy organizations at the Pennsylvania State Capitol to share our stories and urge them to support a bill to ban paraquat in the state. Most were receptive to our concerns — with one lawmaker agreeing to sign on as a co-sponsor. 

My Parkinson’s journey has taught me to fight back with exercise and social interaction, advocate for others, and a Parkinson’s diagnosis is not an ending but an opportunity to live your best life. 

Learn more about how Policy work can impact the lives of people with Parkinson’s. Visit our Advocacy Center to take action in your state now.

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.

Hi, my name is Marjorie Webb. My Parkinson's story began a few months before the "COVID shut down" in 2020. Toward the end of 2019, I began having several unusual symptoms —I fell several times and just didn't quite feel like myself. 

I went to my primary care doctor who immediately began testing. Some of my tests were delayed due to the challenges of trying to schedule them during a global pandemic. Even our large academic medical center was operating on reduced capacity for non-emergent conditions. Many tests later my diagnosis was neurological, but not certain what it was. My Neurologist worked diligently to try to help me with my early symptoms. 

Fast forward to spring of 2024. Something crazy but very telling happened. My gait started freezing. This would happen at the top of the stairs or when I moved from room to room. I was then sent to a Movement Disorders Specialist at The University of Alabama at Birmingham and received a diagnosis of Parkinson's disease (PD) in the summer of 2024. 

I began Sinemet and Entacapone was added later. These medications helped immensely however, I still had a great deal of "off time" — which is when the effects of Parkinson’s medication dosages may not last as long, leading to "off" periods, when symptoms return between doses. During the summer of 2025 I was approved to receive the Vyalev pump from Abbvie. It has been a game changer. 

Additionally, I was very motivated to participate in the PD GENEration genetics study. I wanted to know more about my Parkinson's and perhaps be able to inform my children of any known genetic ties to PD. It was very informative and continues to be. 

After receiving my PD GENEration information, I actively look for research studies. I think that participation in research is essential.

I am back to my old self most days. I now have less "off time" and sleep so much better. I currently participate in any Parkinson's research I am eligible for. I believe that research is what leads to better treatment like the Vyalev, and eventually a cure.

The only way we will find a cure for Parkinson’s is through research. Explore the different opportunities to get involved with Parkinson’s research today.

In 2025, I was diagnosed with Parkinson’s disease (PD).

Like many people, I did not arrive at that diagnosis in one clean, dramatic moment. Looking back, I can see signs that were probably there earlier — changes I explained away as age, stress, old injuries or just the normal wear and tear of life.

I spent 24 years in the United States Air Force, retiring as a Senior Master Sergeant, and then continued serving in federal government and consulting roles. I was used to solving problems, pushing through challenges and figuring things out. Parkinson’s, however, was not something I could simply outwork.

At first, I had more questions than answers. What did this mean? How fast would it progress? What should I be doing now? How would this affect my family, my future and the way I saw myself?

One of the first challenges was accepting that Parkinson’s is not just a diagnosis you receive and file away. It becomes part of daily life — medication schedules, exercise, therapy appointments, changing symptoms, fatigue and the uncertainty of what comes next. Some days the challenge is physical. Other days, it is mental: learning not to measure today’s life only against what I used to be able to do.

There was also a more personal reason I wanted to understand Parkinson’s better. My dad had Parkinson’s, too. He was diagnosed later in life, in his 70s, around 2005. At the time, I did not have the resources or understanding I have now. His primary doctor largely explained it away as an old man’s disease that made old men shake, and Dad rarely saw a neurologist.

Looking back, I wish I had known then what I know now. Parkinson’s is a complex neurological disease — not just a tremor, not just something that happens to older people, and not something families should have to figure out on their own.

That is one reason the Parkinson’s Foundation matters to me.

After my diagnosis, I began looking for reliable information. The internet is full of opinions, personal stories, miracle claims and self-proclaimed experts. Some lived experience is valuable — I share my own story, too — but I wanted information grounded in science, education and real expertise.

The Parkinson’s Foundation became one of the places I turned to for trusted resources. Its website, Parkinson.org, has helped me better understand symptoms, treatment options, exercise, care partner issues and the importance of building a knowledgeable care team. 

I also receive care through the Norman Fixel Institute for Neurological Diseases at the University of Florida, a Parkinson’s Foundation Center of Excellence. Thankfully, because of advances in care and organizations like the Parkinson’s Foundation, I am in a much different place than my dad was when he was diagnosed.

My involvement with the Parkinson’s Foundation Community Network has also given me a way to turn my diagnosis into something useful. As a Parkinson’s Foundation Ambassador, I have had opportunities to help raise awareness, share resources, attend community events and connect with people living with Parkinson’s and those who care about them.

That work matters to me because people with Parkinson’s and their families already know this disease is real. The larger challenge is helping the broader public understand why Parkinson’s deserves more attention, more research, more support and more voices speaking up.

What keeps me happy, healthy and hopeful is a mix of things: my family, exercise, faith, humor, good medical care and the chance to keep serving in a different way. Through the Parkinson’s Foundation, I also learned about Rock Steady Boxing, an exercise program designed for people with Parkinson’s. Participating in Rock Steady Boxing has helped me stay active, challenged and connected to others who understand the importance of movement.

Parkinson’s has changed my life, but it has also given me a clearer sense of purpose. I cannot control everything about this disease, but I can control how I respond to it. I can keep learning. I can keep moving. I can keep showing up.

I have also started sharing my Parkinson’s journey through writing and advocacy. My platform is called From Where I Sit, because I believe perspective is shaped by where we are now and where we have been. From where I sit, Parkinson’s is not just a diagnosis. It is a daily lesson in adaptation, humility, purpose and continuing to move forward.

What advice would I give someone newly diagnosed?

1. Do not go through this alone. Find credible information. Build a care team you trust. Connect with others who understand the road you are on.

2. Exercise. Not someday. Now. Movement is one of the most important things we can do for ourselves.

3. Give yourself some grace. Parkinson’s changes things, but it does not erase who you are.

Parkinson’s may have changed where I sit, but it has not changed the fact that I am still here — still learning, still serving, still speaking up and still trying to make the road a little easier for the next person who hears the words, “You have Parkinson’s disease.”

Join one of our five Parkinson’s Foundation Community Networks and learn how you can volunteer.