My PD Story

I was in college when my mother was diagnosed with Parkinson’s disease (PD).​ At that age, I was mostly focused on myself. I was growing up and trying to figure out who I wanted to be in the world.​ I feel a lot of guilt for not realizing she was​ so​ sick. She was 58 years old at the time.  

​​I was a freshman in college and ​​came home for fall break​. ​My ​mom told me she had a doctor’s appointment. ​I could tell from her tone that it was​ serious​,​ but her symptoms seemed minimal. When she came home, I could tell by the look on her face ​she did not receive​​ good news. I burst into tears, and we spent the rest of the day crying. We ​had no idea​​ what Parkinson’s was going to look like, but we both knew ​we would​​ be in it together.   

​​I took the diagnosis really hard and ​did not​​ ​know​​ how to process it. ​My mom encouraged me to focus on what I had to do, and she ​did​​ the same. Parkinson’s looks differently in everyone, and ​in ​her early years​, PD mostly​ showed up as​ severe​ fatigue. She was able to do most of the things she usually did, but it took more out of her. ​​​ 

When the pandemic hit, I left NYC and headed home. I expected to stay for a couple weeks, but I have been in my hometown ever since. My mom has increasingly needed more support and I have taken on the role as her primary caregiver. Life has looked very different for us over the last few years. ​​ 

We have always gone through life together. Although it was earlier than both of us would have liked, our roles switched. My mom’s love prepared me for this role. I care for her with the strength and courage she poured into me. ​​​ 

​​​I loved growing up with my mom and cherish our relationship to this day. My mom means the world to me and watching her ​battle​​ ​Parkinson’s has been the worst thing to ever happen to me. ​However, ​​being ​able to care for my mom is truly an honor. It has taught me how to be patient and move slowly. ​I have​​ gratitude​​ for my health and ​I​​never ​take​ the small things​ for granted ​anymore​​     ​. ​     ​ 

​​​​After a couple years, ​​we were finally coming out of the pandemic when I learned about Parkinson’s Champions. ​2022​​ was a year of ​​​transition. My mom sold our family home and moved into an assisted living facility.​ I bought my first home and planted roots in my hometown.​ ​There was so much debilitating change, that I​​ ​had ​the desire ​to pour my energy into something positive.  

I decided to run the United Half-Marathon in NYC to raise money for the Parkinson’s Foundation. It was an incredible experience that shaped how I show up for the Foundation ​to this day​​. I began using Parkinson’s Foundation resources to better educate myself​ and the people in our lives.​​ The resources give me the tools to advocate on her behalf and the staff at my mom’s ​facility ​find the​​ resources help​ful.​​     ​ 

Running and fundraising have become such powerful ways for me to share my mom’s story and connect with the Parkinson’s community. When I run, ​it is​​ not just about crossing a finish line, but a way that I carry her strength, resilience and spirit with me every step of the way. Every mile feels like a tribute to her and to all the families navigating Parkinson’s.  

Fundraising gives ​a ​dee​p​​er meaning to my journey by turning it into action. Philanthropy can get us one step closer to a cure. It also gives me the opportunity to talk about my mom, raise awareness and help others understand what living with Parkinson’s looks like. 

Through the Parkinson’s Foundation, ​I have​​ met so many people whose lives have been touched by PD. Whether ​they are​​ living with it, caregiving, or supporting loved ones, ​it is​​ a reminder that my mom and I are not alone.​ My ​commitment​ to support the PD community is unrelenting. ​     ​​​​​​     ​ 

I believe that there is purpose in sharing your voice and your story. I encourage you to do so as well. Since the Half-Marathon, I have completed the full NYC Marathon, joined ​the ​People with Parkinson’s Advisory Council, and lifted my voice to ​represent young caregivers and those like my mom who are in the ​later stages of PD​. ​ 

Channeling Advocacy Into Creativity 

Our ​PD story​​ inspired the creation of A Good Run​​, a multimedia project started by my mom and I to motivate everyone to show gratitude for their health and the health of their loved ones.​​​ The project began as part of my fundraiser for​​ the 2024 NYC Marathon. My mom ​has ​always ​said​​ she “had a good run” ​in ​​life and ​​I wanted to honor that through storytelling and ​by turning our pain into purpose with​​ ​the Parkinson’s Foundation. What began as a film about marathon training and caregiving evolved into a reflection of my mom’s PD journey. We hope that A Good Run allows people to think critically about how movement can nurture gratitude, mental health and physical health.  

A Good Run has grown into an initiative that hosts events and shares stories about the intersection of health and caregiving. Our first​ event,​ A Good Run 5K​​, ​​​will take place on November 9 at East Shore Park in New Haven, CT—one of my family’s favorite places—and includes a virtual option for participants.​ ​Sign up ​​here​. 

​​Our documentary, A Good Run: Finding Peace with Parkinson’s, ​showcases​​ my mom’s strength and resilience through her PD journey.​ The film explores heartfelt interviews, home videos and visual representations of the disease to share our story. The project highlights some of the hardest moments, but grounds us in the idea that your health is not promised and you can show gratitude for it everyday.  We hope at least one parent and child watches our story and feels understood. Our journey is not over, but we recognize the power of sharing our experience. ​Our documentary will premiere during November’s National Family Caregivers Month​ and continue into the new year​​     ​ ​     ​ 

​​Advice for People New to Parkinson’s 

You ​do not​​ have to suffer alone. PD ​looks different for everyone​​​. Keep moving your body, find community and never give up. Even as the disease progresses, it reinvents ways to foster purpose. You are important. Whether as a caregiver or someone living with PD, your life has meaning​.​ ​Prioritize ​what ​brings you joy and focus on making good moments against all odds. ​​     ​​​     ​​​     ​ 

Join Parkinson’s Champions today and explore there are many ways you can raise funds for the Parkinson’s Foundation. Find more ways you can help here.