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.