An interview with Caitlin Nagy: Embracing being a Pretty Dope Women on January 30, 2024 by George Ackerman, Ph.D, J.D.
Biography
I am a mom, wife, creative director, entrepreneur, published author and I have been living with Young Onset Parkinson’s Disease (YOPD) since 2014. I proudly identify as a PD Woman, someone living with Parkinson’s Disease.
My mission? To revolutionize the way PD Women are perceived and treated within the healthcare industry.
Please tell me a little about your background.
It was 2014 and I was 31 when the symptoms first appeared, a tremor in my right wrist that quickly spread to a shaking hand and tightly cramped arm. I had just landed my dream job leading a corporate creative team plus I had just bought my first home with my soon to be husband. I waited another year to see an actual Moves Disorder Specialist that diagnosed me with a ‘Parkinsonism’.
As the years progressed it became incredibly frustrating when trying to do the most basic things like getting dressed, carrying a cup of tea, or eating a meal. For the first 6 years I avoided social events, get-togethers or meeting up with old friends because I had been totally ashamed of my body and my lack of control over it. And really just didn’t want to try and explain what it was when I really hadn’t accepted what it was myself.
Fast forward to nine years later, I wear a multitude of hats, as most women do these days. I am a mom (of a feisty four-year-old girl), wife, entrepreneur, creative director, and advocate for Young Onset Parkinson’s. I have spent the last nine years ‘leaving no stone unturned’ as my husband likes to call it. I’ve tried a multitude of alternative therapies and treatments, have had some interesting experiences, and met some incredible people along the way.
Some days are good and feel like I have the energy to accomplish so much and other days my energy is so low that I can hardly get out of bed. I had to come to terms with where I was at. Accept it, be ok with it. But I would never give up my deepest inner belief that I could cure this.
And while I am working on accepting where I am at, I truly believe that it is my destiny to heal my body from Parkinson’s and help others do the same.
As a designer and creative it is in my nature to want to solve the problem. I am keenly driven by the innate desire to find the solution. This has helped to keep me motivated, when I have had a crap day or felt like my symptoms could be getting worse.
There isn’t enough awareness about how Parkinson’s affects women. Through my own research and hearing from many other women with PD who struggle with symptoms correlated to our menstrual cycle, I realized the importance of creating Pretty Dope Women. And that’s what got me started.
This is about more than empowerment; it’s about ensuring that the distinct experiences of women with Parkinson’s are seen and understood. My dive into research was sparked by the stark lack of awareness regarding the disease’s unique effects on women, particularly how our symptoms interweave with our menstrual cycles. The narratives shared by countless PD women have been a driving force behind the creation of “Pretty Dope Women.”
My purpose is clear: to narrate my life as a PD Woman with unflinching honesty. By doing so, I aspire to encourage others to acknowledge their reality openly and embark on a path to healing. Our collective voices and shared knowledge have the power to illuminate the specific obstacles women encounter with Parkinson’s. Together, we strive toward not only heightened awareness but also a solution… A CURE.
Can you tell me more about your organization?
For me personally I had so much resentment towards the word ‘Parkinson’. It made me feel weak and a victim of this disease. I no longer wanted to feel like a victim in my own body. I knew that I needed to embrace what I had been given, to be able to move into a state of love and acceptance with it. So, in fall of 2023, I decided to give my diagnosis new meaning.
Enter Pretty Dope Women. More than just a name, it’s a reflection of who we are—powerful, resilient, and remarkable.
I gave it a name that truly honors the strength, resilience, and individuality of PD Women. Because let’s be honest: even though we may be deficient in dopamine, we are undeniably PRETTY DOPE.
Pretty Dope Women is dedicated to empowering women in their 30s and 40s who are with Parkinson’s Disease. Through this platform I am sharing my personal journey—the highs, the lows, and the lessons—of healing my body and working towards putting PD into regression.
What is your passion:
My passion is being able to express myself through creative channels like singing and playing guitar, design & gardening.
How did you get involved in Parkinson’s awareness and hope for a cure?
I got involved because I was so frustrated with the lack of information on alternative therapies available to me and the lack of people my age with this disease that I could relate to. Being 31 in a local support group full of 60+ seniors with Parkinson’s is so hard to relate to, especially when you feel like your life is just getting started. Stepping into the advocacy and influencer spotlight has been such a healing journey for me. By putting myself out there I was able to hear from other people my age going through the same thing and hear how they were feeling.
How can someone get in touch? What is your website?
Reach out to me on IG @prettydopewomen
Or contact me through my website: https://www.prettydopewomen.com/
How can others also become advocates for awareness?
Share your story with Parkinson’s. Whether you are a PWP, a friend, caregiver or loved one. This disease affects more than just the person diagnosed. By talking about our own experiences, we can not only bring better awareness to it, we can share our own experiences with it, so that others can learn from us as well. And the more we talk about it, the louder our voices get. And that my friends will get us closer to the cure.
If you can lean into it, we can learn to accept it within ourselves, love ourselves a little more and see life from a different perspective.
In your opinion what is the key to effective advocacy?
Be your true authentic self. Have compassion for others, as everyone’s experience is so different. Do not be afraid to speak up and share your story.
How can we better fundraise to support a cure for Parkinson’s?
I wish there was some type of simulator that would allow people to experience what it actually feels like to live in a body with Parkinson’s. If others could feel, what it could feel like for them, I think that people would be a lot more motivated to support this cause.
What other activities do you undertake to help improve and support your daily living Eg
exercise and alternative remedies?
Daily
- Meditate 1 – 2x a day
- Exercise (Weight training, walking, yoga)
- Limit my social media screen time to 1 hr/ day (this is the hardest and not always achievable )
- Supplement; Adaptogenic Herbs & Mushrooms, Probiotics
- Water & Electrolytes
- Lately – I’m seeing some really great results with Symbx Red Light Therapy
Why should people who don’t have Parkinson’s care about this?
Because this is the fastest growing neurological disorder in north america and if it’s not effecting their lives now, it most certainly will in the very near future.
Have you had any family members or relatives affected by Parkinson’s disease?
No
If you had one song that would tell us more about you or represent your life, which song would it be?
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
A quote from my chapter in One Decision Away:
And yet there was this very gentle quiet yet confident voice from deep inside saying “fight for it” “find the solution” – Caitlin Nagy, One Decision Away