An interview with Kelsey Enright: More Than My Diagnosis: A Young Mom Finding Her Voice Through Parkinson’s
Please tell me a little about your background.
I’m Kelsey, a 31 year old mom of two from New York living with young onset Parkinson’s disease. I was diagnosed when I was just 23 years old, shortly after having my children, which means they’ve never known a healthy version of their mom. I also have a rare genetic form of Parkinson’s caused by inheriting two PARKN (parkin) gene mutations, one from each of my parents, even though neither of them has Parkinson’s. Living with this disease has completely changed my life, but it’s also shown me that my voice has the power to help others.
Can you tell me more about your Advocacy?
My advocacy is rooted in sharing what life with young onset Parkinson’s actually looks like. I want people to understand that Parkinson’s isn’t just a disease that affects older adults. There are young parents, students, professionals, and entire families trying to navigate this disease while still living life. I speak openly about the realities of medication changes, insurance barriers, mental health, parenting, and everything that happens outside of a doctor’s office.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
I didn’t choose advocacy. Parkinson’s kind of chose it for me. After years of struggling with medications, insurance issues, and realizing how misunderstood young onset Parkinson’s is, I reached a point where staying quiet didn’t feel like an option anymore. If sharing my story helps someone feel less alone or encourages change, then every difficult experience has meaning.
What type of goals does individuals with Parkinson’s have when working with you?
I don’t consider myself someone who has all the anwers. I simply hope people see a little bit of themselves in my story. If I can encourage someone to advocate for themselves, ask questions, or realize they deserve to be heard, then I’ve done what I set out to do.
What type of training and how long are the programs?
Right now my advocacy comes from lived experience. I’m also working toward my psychology degree because I hope to combine my education with my personal journey to better support others in the future.
What effect can your Advocacy have on an individual with Parkinson’s?
I hope it gives people hope without pretending this disease is easy. Parkinson’s is hard. There are good days and really difficult days. I want people to know they aren’t weak for struggling and they aren’t alone in this fight.
What would you like to see as a future goal for your Advocacy?
I want to become a national advocate for young onset Parkinson’s disease. I want to work with researchers, healthcare organizations, pharmaceutical companies, and lawmakers to improve treatment options, insurance access, and medical devices. Most importantly, I want patients to have a seat at the table because we’re the ones living with the decisions being made.
What events do you participate in?
Most of my advocacy has been through social media, interviews, and sharing my journey online. As my confidence grows, I hope to speak at conferences, participate in awareness events, and eventually advocate directly with researchers and policymakers.
How does this also assist the caregivers?
Parkinson’s doesn’t just affect the person diagnosed. It affects spouses, children, parents, siblings, and friends. My children have never known a healthy version of their mom, and that’s probably the hardest part of this disease for me. By helping people understand what life with Parkinson’s really looks like, I hope caregivers feel seen too.
How can someone get in touch? What is your website?
Right now, the best way to connect with me is through my social media pages. As my advocacy continues to grow, I hope to create a website where people can find resources, my story, and ways to get involved.
How can others also become advocates for awareness?
Start by telling your story. You don’t need a huge following or a fancy title to make a difference. Some of the most powerful advocacy happens one conversation at a time. Every voice matters.
In your opinion what is the key to effective advocacy?
Authenticity. People don’t connect with statistics nearly as much as they connect with someone’s real life. If we want people to care, we have to let them see what living with Parkinson’s actually feels like.
How can we better fundraise to support a cure for Parkinson’s?
By helping people understand that Parkinson’s is more than a tremor. It’s missed family moments, careers interrupted, children watching their parents struggle, and countless daily decisions most people never have to think about. When people understand the human side of Parkinson’s, they want to help.
What other activities do you undertake to help improve and support your daily living Eg exercise and alternative remedies?
I stay as active as my body allows, continue working toward my college degree, spend as much quality time with my children as possible, and write. Writing has become one of the ways I process everything this disease brings into my life. I also believe having purpose is just as important as taking medication.
Why should people who don’t have Parkinson’s care about this?
Because Parkinson’s isn’t just about the person living with it. It’s about families. It’s about children growing up watching a parent fight a disease. It’s about people losing careers, independence, and parts of themselves while still trying to live meaningful lives. None of us knows whose family Parkinson’s will touch next.
Have you had any family members or relatives affected by Parkinson’s disease?
No, I have a genetic form of Parkinson’s caused by inheriting two PARKN gene mutations from my parents, although neither of them developed Parkinson’s themselves. My diagnosis has made me passionate about increasing awareness of genetics and the unique challenges faced by people diagnosed at a young age.
If you had one song that would tell us more about you or represent your life, which song would it be?
I’d choose Heavy by Linkin Park featuring Kiiara. It reminds me what it feels like to carry an invisible weight every day while still trying to be the best mom I can be. Even on my hardest days, it reminds me to keep moving forward.
What are your social media tags?
Facebook: https://facebook.com/kelsey.marie.518883
TikTok: @kelsey.in.words
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
Parkinson’s has changed my life, but it hasn’t taken away my voice. If there’s one thing I hope people remember, it’s that our experiences matter. Every patient has a story worth telling, and those stories have the power to improve the future for everyone living with this disease.