I was diagnosed with Parkinson’s disease (PD) in March 2023, just a couple weeks before my 43rd birthday. I went to the appointment alone after a long drive. I did a series of tests and was told matter-of-factly that I had Parkinson’s. 

I didn’t really react... no big emotional response. I was just like “Okay… what do I need to do?” I left with information, medication options and a plan for more testing.

That’s just how I handle big things. I’ve had a lot of those moments in life, and I go into “figure it out” mode. I told my son and my parents right away, then my sister, my closest friends and my supervisor. I also posted on social media about it pretty quickly because I didn’t want people to make assumptions about why I’m shaking.

After my diagnosis I discovered the Parkinson’s Foundation and the People with Parkinson’s Advisory Council while researching online. When I saw the announcement for the council I immediately applied — I was eager to learn more about Parkinson’s and contribute in a meaningful way to a community that understands the journey.

Being a member of the People with Parkinson’s Advisory Council is incredibly rewarding. It feels empowering to have a voice and to be part of shaping resources and support for others living with Parkinson’s. 

At times, I wish I could contribute even more. Balancing a demanding full-time leadership role, family responsibilities and living in a rural community can be challenging, but I remain deeply committed to the work and the impact the council makes.

After diagnosis, my emotions took a while to catch up. It was almost a year later when I first felt real frustration. During an OT (occupational therapy) appointment I realized how much my movement had changed.

Another year passes and the grief really showed up. 

One quiet morning, I was lying in bed next to my partner and I could feel my left arm tremoring. I put my hand on it, gently held it for a moment, and said, “I’m so sorry you’re broken.” It sounds kind of ridiculous, but it felt real. I needed to apologize to my own body. 

That moment stuck with me all day, I was constantly on the verge of tears. I ended up finally crying that night when he asked me what was wrong. I told him. I couldn’t hold it in anymore. I avoided sharing my thoughts and feelings about what's going on because I don't want anyone to worry... Not my parents, my son, my love... No one.

Parkinson’s doesn’t feel inspiring to me. It feels like loss, frustration, anger and being tired all the time. “Hope” for me isn’t about being positive. It’s just getting up and dealing with it anyway.

And today… today was one of those days.

Recently I was at a work event, and the expo center is about a half mile from my hotel. I walked back and forth a few times. At first, I was kind of proud of myself. But by the end of the night, I was hurting and struggling just to get back. I had to stop multiple times.

I can’t fully explain how much that sucks.

Before all of this, I walked a few miles every day without thinking about it. Now a half mile felt like too much. 

I’m frustrated with my body. Today, I hate Parkinson’s.

I’ve been trying to act unbothered... trying to be strong, to accept it, to not let it define me. But the truth is, some days I’m not okay. Some days I’m scared, sad, angry, insecure, in pain, tired, lonely… and at times, hopeless.

Through the lows and dim highs, the Parkinson’s Foundation remains an invaluable resource for me. I regularly turn to Parkinson.org as my first source when I have questions or need support. 

Resources that have been especially helpful include the Substantial Matters podcast, virtual PD Health @ Home educational programs like Mindfulness Mondays, the Women with Parkinson’s Community Network and the Hospital Safety Guide. These tools have provided practical guidance and a sense of connection, which is so important when navigating life with Parkinson’s.

Many days it feels like too much work to try to slow progression through movement and exercise when I already have so little time and energy. And when I do try, my body doesn’t always cooperate. Some days, it feels easier to just give up.

But this is the part people don’t always see. This is Parkinson’s too.

I can hate it today… and still show up again tomorrow. I’m not giving up just yet.

Find the resources that work for you. Explore our resources today.

I’m 36 years old and live in New York City. Twelve years ago, at just 24 years old, I was diagnosed with Parkinson’s disease (PD). It was completely unexpected, especially since no one in my family has Parkinson’s. At the time, it was hard to imagine what the future would look like. Looking back now, I can honestly say that while Parkinson’s has changed my life, it hasn’t stopped me from living it. In many ways, it has given me a new sense of purpose and a chance to help others.

For many years, I relied on levodopa every two to three hours to manage my symptoms. Finding the right balance was challenging. Some days I experienced dyskinesia, while other days my tremors were more noticeable. I worked closely with my doctors, adjusting doses and trying different approaches, but it often felt like I was chasing the right combination.

In the summer of 2021, while spending more time at home during the pandemic, I realized my symptoms were becoming more difficult to manage. Around that time, I attended a webinar about deep brain stimulation (DBS), and it gave me hope that there might be another option. I talked with my neurologist who felt I was a good candidate. Six weeks later, I had the surgery. After several weeks of programming appointments, we found the settings that worked best for me, and now I only return once a year for adjustments.

For me, DBS was truly life-changing. Since my surgery, I have not needed to take levodopa, and I feel incredibly grateful for the difference it has made in my daily life.

Today, I focus on what I can do. I stay active with Pilates, boxing, and physical therapy. Exercise has become one of the most important tools in managing my Parkinson’s. The Bandeen Center in NYC has also been an invaluable part of my journey, providing specialized fitness programs, education and a supportive community that helps me stay strong and motivated. 

I also make time for the things that bring me joy. I always have a trip planned or something to look forward to, and that excitement keeps me moving forward. Every summer, I travel to Europe. Parkinson’s has never stopped me from exploring the world.

Over the past 12 years, I’ve learned that living well with Parkinson’s is about building the right support system and finding what works for you. I’m fortunate to have an incredible team of doctors, and together we’ve found ways to help me continue living the life I want. If sharing my experiences can make someone else’s journey a little easier, then every conversation is worthwhile.

One of the greatest sources of support has been the Parkinson’s Foundation. My doctor introduced me to the Foundation, and it has become a place where I can find trusted resources, connect with others, share my story, and advocate for people living with Parkinson’s — especially those with young-onset Parkinson’s disease.

One thing I’ve learned is that everyone’s Parkinson’s journey is unique. No two people have the same symptoms, treatment plan or experience, and that’s OK. Try not to compare your path to anyone else’s. Focus on taking one step at a time and finding the approach that helps you be the best version of yourself.

When I was first diagnosed, I was encouraged to keep it private, so I only shared my diagnosis with my closest family and friends. For a while, I let Parkinson’s define me. Over time, though, I realized that Parkinson’s is only one part of who I am — it is not my whole story. With the right support, resources and mindset, it’s possible to continue pursuing your goals, making memories and finding joy.

That’s why I choose to share my story. I hope it reminds others that there is hope after a Parkinson’s diagnosis. Be curious, ask questions, advocate for yourself and don’t be afraid to lean on your support system. 

Every year, advances in research, technology and medicine are creating new possibilities for people living with Parkinson’s. Your life may look different than you expected, but it can still be full, meaningful and joyful. Parkinson’s is part of my story, but it is far from the whole story.

Learn more about young-onset Parkinson’s disease.

Everyone’s journey with Parkinson’s is unique, and mine began with REM Sleep Behavior Disorder or RBD. In 2018, I experienced episodes of acting out my dreams, which led to a diagnosis of RBD at Virginia Commonwealth University (VCU) Health in late 2019. I was later referred to a movement disorders specialist and enrolled in a RBD research study. Although I did not initially have Parkinson’s disease (PD), my symptoms gradually progressed over time. In 2022, I was diagnosed with Parkinson’s. 

From the earliest days in 2020 of learning about RBD and its connection to Parkinson’s and other synucleinopathy, I made a commitment to become engaged in research and volunteer as a study participant. Learning about the science of Parkinson’s has changed how I see the disease. It gives patients like me a way to move from fear towards hope, purpose and contribution. 

I don’t want to be defined by Parkinson’s and how its symptoms impact me. Instead, I want to be defined by what I have done to make a difference and advance understanding of Parkinson’s. So, instead of feeling defined by Parkinson’s, I began to see how I could contribute to progress. 

It is through my participation in a research program at Massachusetts General Hospital in Boston, MA that I also learned of the important work of the Parkinson’s Foundation. In addition to participating in research, I realized my contribution could also come through patient advocacy, mentorship and education. 

One of the true privileges of my adult life came in July 2023 when was I was invited to join the Parkinson’s Foundation People with Parkinson’s Advisory Council. 

Living with Parkinson’s and its movement and non-movement symptoms is never easy, and no one day is ever the same. In recent months, living with Parkinson’s has been more difficult for me. However, I have learned that there is something incredibly special about the Parkinson’s community. We are there for each other. We understand what is sometimes difficult for others to understand. And we support each other along the way. 

As a member of the advisory council, I learned how our collective voices can change how people understand Parkinson’s; how patients and caregivers are supported; and how research and policy through research programs like PD GENEration (and now also PD GENEration Insights) can accelerate better outcomes. 

I also quickly learned that there is no better way to build community and support the work of the Parkinson’s Foundation than to participate in one of the Parkinson’s Foundation Moving Day events held coast to coast.

When you are living with PD, it is not always easy to find the resources that are available to you in the community. Parkinson’s is also a disease that impacts more than just the individual. Instead, it also impacts both your spouse and your family.

When I moved to Richmond in 2022, it was difficult to find the different programs available to people with Parkinson’s in a large urban area. Moving Day changes that and was the reason for my wanting to bring Moving Day to Virginia in 2024. It brings together the many resources available in our community for people with PD and their families. 

We will hold our third Moving Day Richmond, VA, on October 24 at the Richmond Raceway — and I can think of no event that is more meaningful, powerful or uplifting. Moving Day is a celebration of resilience, hope, and the strength of a community determined to change the future of Parkinson’s. 

Moving Day also embraces the power of exercise, which is proven to manage and improve Parkinson’s symptoms. From the earliest days of my diagnosis, I learned that exercise plays a central role in managing Parkinson’s.

The focus of my week is participating as much as my work schedule will allow in a local program called LiftPD. LiftPD is structured around training, therapy and prevention strategies designed to slow progression and maintain function. LiftPD depends heavily on grants and community support, and again, it is my hope that my lived experience with Parkinson’s can help guide and strengthen LiftPD’s efforts to ensure that individuals at every stage of the disease have access to functional exercise programs that enhance mobility, confidence and quality of life.

When I speak, I often say it is an oxymoron to stand here and say I feel lucky. However, I feel incredibly lucky. I am fortunate to have an exceptional care team at VCU Health, and I am grateful for the opportunities I have had to help advance our understanding of Parkinson’s and its future. 

One of the guiding principles of my longtime professional career in and around healthcare is that “Helping one person may not change the world, but it may change the world for that one person.” 

Explore Parkinson’s Foundation volunteer opportunities today.

For most of his life, Dale Picciano has answered the call to serve others.

In 1977, I joined the U.S. Marines, an experience that shaped my commitment to community and service. Reflecting on that chapter of my life, I was honored and privileged to walk amongst many heroes that are warriors. Semper Fi. 

A few years later, in 1981, I began a 32-year career as a firefighter and paramedic with the City of Miami. For more than three decades, I was honored to help others during some of their most difficult moments. I was always surrounded by people who inspired me.

I retired in 2013, looking forward to traveling, spending time with family and friends, and enjoying the next chapter of life. But I had been experiencing a combination of mysterious movement and non-movement symptoms for years, not knowing why. In retirement, I was finally diagnosed with Parkinson's disease (PPD) in 2022, at the age of 65.

Like many people living with Parkinson's, I turned to the Parkinson's Foundation for information and resources — but I found so much more, I found community.

The Parkinson's Foundation became an invaluable resource for me to depend on. I was encouraged to give back and support the Foundation in its continuing efforts in the Parkinson's community. I wanted to make a difference again with my life by volunteering.

I went into action. In my first year participating in Moving Day Miami, my team raised more than $14,850 for the Parkinson's Foundation. Drawing on my career in firefighting, I personally reached out to fellow firefighters through phone calls, face-to-face conversations and community outreach. 

I was happy to connect with my fellow firefighters to help raise awareness about Parkinson's and encourage important discussions within the first responder community.

“Dale’s efforts helped connect the Parkinson's Foundation with an entirely new network of supporters while increasing awareness among a community that may face an increased risk of developing Parkinson's, which is one of the reasons the Foundation named him Rising Star Volunteer Award in 2026,” said Celeste Tennant, Parkinson’s Foundation Director of Volunteer Engagement.

Today, I remain active in my PD community, where I am a member of Rock Steady Boxing Miami. I fight alongside others who are resilient and determined to live stronger with this disease. Looking around the gym, I see a familiar spirit in the people beside me.

I am honored and privileged to walk amongst many heroes that are fighters, that won't quit and are fighting back.

From Marine and firefighter, to Parkinson's fighter and volunteer, I believe in service. I bring the same service-driven mindset that got me through my career into my volunteer work with the Parkinson’s Foundation. 

A Parkinson's diagnosis could slow anyone down, but it can also help you step forward, raise awareness and build a new community.

Dale received the Parkinson’s Fondation Rising Star Volunteer Award for demonstrating that even in the face of adversity, there are always new ways to serve. Find out how you can volunteer today.

In 2023, I was diagnosed with Parkinson's disease (PD) at the age of 50. To say it was a shock would be an understatement. It was the kind of news that stops you in your tracks and changes everything.

In the beginning, I had a lot of questions and very few answers. My husband, Rocky, and I found ourselves navigating unfamiliar territory while trying to understand what this diagnosis meant for our future and our family. Like so many people living with Parkinson's, I quickly learned that while the diagnosis was life-changing, it did not define us.

While I was still processing my diagnosis, Rocky reached out to the Parkinson's Foundation to learn how he could get involved and support the Parkinson's community. He joined the Parkinson’s Foundation Midwest Chapter early on and became connected to an incredible network of people who understood this journey.

For nearly two years, we kept my diagnosis private from our four boys as we worked through it ourselves. Once we finally shared the news, something shifted in me. I decided I was all in. Instead of hiding from Parkinson's, I wanted to learn, connect and help others.

The Parkinson's Foundation introduced me to an extraordinary community of people living with Parkinson's, care partners, advocates, researchers and healthcare professionals. Through those connections, I found my voice. What began as one of the most difficult moments of my life became my purpose.

That purpose inspired Rocky and me to become Parkinson's Champions. We are strong believers in clinical trials, and I have personally participated in two of them. Through these experiences, we developed a deep appreciation for the importance of clinical research and the role it plays in advancing better treatments and outcomes. 

Without these trials, progress stalls. That realization strengthened our commitment to supporting this work in every way we can, including raising awareness and funding for the Parkinson's Foundation.

As a planner by nature, I believed that with the right idea and the right team, we could create meaningful impact. We joined forces with fellow Parkinson's Champion and good friend, Jordan Levin, to build a community-wide challenge designed to inspire people to get active while raising awareness and funding for the Parkinson's Foundation.

What began as a competitive rowing challenge quickly evolved into something far more meaningful. We realized the real value wasn't in competition — it was in getting people moving. From there, the challenge expanded beyond rowing to include power walking, running, biking and any form of movement people enjoyed.

In the end, it became less about competition and more about movement, community and coming together in support of a cause that matters deeply to us.

The Million Meter Challenge became something much larger than Parkinson's disease alone. It became a reflection of life itself.

The Million represented connection and community. We didn't have a million people, but it often felt like we did.

The Meters represented movement. Every step, every row, every spin mattered. Nothing was taken for granted.

The Challenge became a reflection of what we can accomplish together through movement, connection and community as the foundation of living well. No one has to endure this disease alone.

Our biggest takeaway was the power of community and the reminder that we are all in this together. We were incredibly proud to watch our Million Meter Challenge movers accomplish things they never thought possible and to see the challenge grow far beyond anything we originally imagined.

Parkinson's is not a club anyone wants to join. But the Million Meter Challenge showed us that together, anything is possible. It reminded us that health is something we should never take for granted and reinforced one simple but powerful message: Don't wait for disease to knock on your door before you start taking care of your body, your mind and your life.

Through the Parkinson's Foundation, the Million Meter Challenge and the people we've met along the way, I've learned that while Parkinson's changes lives, community changes them too.

Looking back, my diagnosis changed the course of my life in ways I never expected. It also introduced me to a community that helped me find hope, purpose and the confidence to use my voice. 

Jen & Rocky are recipients of the Parkinson’s Foundation Top Fundraisers Award.  Learn how you can become a Parkinson’s Champion today.