PARKINSONZ ACEs
Adapt, Conquer, Empower Others
Each Parkinsonz ACE has faced the shock of diagnosis, the fear of decline, and the daily unpredictability of life with Parkinson’s. And yet, they’ve found ways to train, adapt, inspire others, and live fully.
Their stories are shared here not to impress, but to empower—so that anyone newly diagnosed can see what’s possible. Whether it’s walking again after a fall, competing in a triathlon, or simply getting out of bed with purpose, these stories remind us that progress is personal—and that you’re not alone on this journey.
Meet Shawn Evans
The Architect of Balance
Shawn Evans is an architect, athlete, and advocate who turned a Parkinson’s diagnosis
into a catalyst for transformation.
Diagnosed in 2018 at age 46, Shawn was initially terrified—worried for his future, his family, and the career he had spent decades building. But instead of retreating, he leaned in.
With the support of a movement disorder specialist and fitness coach David Wargo at Movement 360, Shawn discovered that neurological fitness—especially strength training and extreme balance work—could reconnect his mind and body in powerful ways. Just months into training, he began to reverse symptoms and rebuild confidence.
Now a principal at the globally recognized MASS Design Group, Shawn is helping shape more inclusive spaces through the lens of lived experience. He shares his journey openly on social media, blending science, storytelling, and self-awareness. His message is grounded in curiosity, humility, and hope: observe your symptoms, embrace your vulnerability, and train like your future depends on it—because it does.
Shawn Evans in his own words
What was your initial reaction to your diagnosis?
My diagnosis was a shock. I know now that some symptoms had been evident for a decade – loss of smell and poor sleep, but my the first movement symptom I experienced was a tremoring thumb. My physician dismissed my concerns, nearly refusing my request for a referral to a neurologist.
A general neurologist confirmed Parkinson’s within six months of the first tremor, thus my journey to confirmation was quite short compared with most. Never having known anyone with Parkinson’s, I was terrified.
How quickly would I deteriorate? How would this impact my wife and children? How would this impact my career as an architect?
Is there anything about your culture that has made a Parkinson's diagnosis easier or more difficult?
Ageism is a common form of discrimination in the United States. Men are expected to be physically strong and the elderly and disabled are too often out of sight.
PD accelerates our aging processes and the disabilities that all people will face if they live long enough. We no longer live inter-generationally and many people move across the country in search of better career opportunities.
Too many of us are separated from family, who we turn to first for emotional support at first and the caregiving that will follow.
What helped set you on a positive trajectory?
A second general neurologist confirmed my diagnosis and emphasized the need to do two things – find a movement disorder specialist (MDS) and start exercising. At the time, there were just three MDS in New Mexico, and none in my city of Santa Fe. I began researching the Parkinson’s Centers of Excellence, looking at locations both closer to home and those close to places I frequently traveled. I was delighted to discover that the University of Pennsylvania, my alma mater, was on this list and making great advances.
As I was frequently traveling to Philly for work and had a great support network there, this made a great deal of sense. I made my appointment and began my three months wait. In the meantime, I began working out with a fitness coach, David Wargo of Movement 360, who had been exploring neurological exercise for many years and had worked with a number of people with Parkinson’s (PWP). In just a couple months, I began to see the possibilities for neurological healing, seeing improved connections between my mind and my body.
Our work involves strength building, cardio, and what has become feats of extreme balance. When I finally saw my MDS, Dr. Andrew Siderowf at Penn, our conversation quickly calmed many of my fears. He explained that given my age and general health, that as long as I put in the work (exercise!) and carefully managed my medications, my progression would likely be manageable. One of the things that drew me to Penn was its model of integrated care – neurologists, physical therapists, occupational therapists, and speech therapists, all working together to train me to be observant about my condition.
Much of my self-identity (too much to be honest) is grounded in my career as an architect, and my diagnosis arrived just as my reputation began to be cemented and I could see a long and rewarding trajectory that was contributing positively to many communities. As I began taking better care of myself, I saw my symptoms starting to reverse themselves. I regained a natural arm swing within a year and I began to feel strong for the first time in my life. The neurological fitness training quickly provided me with extraordinary balance abilities and lifted my confidence.
Heather Cianci, my physical therapist at Penn, became one of my biggest cheerleaders, fascinated by the atypical neurological training that David was putting me through and the rapid advancements in coordination I was seeing.
I began posting exercise videos on social media accompanied by nuggets of writing that explored proprioception and neuroplasticity, all the while plotting how I would go public with my condition. About eighteen months following my diagnosis I outed myself on Facebook.
The overwhelming outpouring of support that followed gave me a bedrock of confidence and love. I soon found some extraordinary Facebook groups, first Parkinson’s Exercise in Action, and later Parkinson’s Fight Club, which were full of inspiring PD warriors who were deeply thinking about what they were going through and supporting each other. In the years since, I have become very public about my condition.
My positivity comes from a beautiful cycle of learning to understand, accept, and be curious about my condition, embracing my vulnerability and struggles, taking every opportunity to raise awareness of this disease, and presenting myself and our unique exercise as just one way forward.
How has your diagnosis changed how you perceive your future?
“The future” once seemed very far away. While my newfound strength, coordination, and balance has tremendously increased my confidence, I have tried to accept and embrace the likelihood of eventual disability. I’m going to push as hard and as long as I can, but I need to find peace and acceptance with the curve of increasing difficulty.
I am learning to be comfortable talking about my condition and I am learning to ask for help when I need it. Parkinson’s has allowed me to understand that we can be superheroes one day and incapacitated the next. This oscillation allows us to find truth.
What advice would you give to someone new to PD?
1. Find an MDS to guide you through what modern medicine knows but be open to other notions.
2. Be curious and not embarrassed about your symptoms. Study them to understand how to impact and track them.
3. Discover how your mind and your body responds to information. Where do you find inspiration? Through dialogue with other PWP? By reading guides for PWP? My favorite is the Davis Phinney Fund manual, Every Victory Counts. By reading medical research papers? I found quickly that poring over scientific studies was not good for my own psychology.
4. Talk to your friends and loved ones about what you’re going through, both physically and emotionally. Figure out how you want and/or need them to support you and tell them.
5. Find a support group, either in person or on the web. Learn from those who began this journey before you.
6. Exercise! Recognize that it may take time to rebuild your strength and confidence. Find a trainer who can help you push beyond limits you set for yourself.
7. Embrace failure in your neurological training. If you can easily complete a challenging physical task, it’s not helping you heal the neural network between your brain and your body.
8. Study the differences in how your right and left sides perform. Really pay attention to the differences which are the result of being right or left-handed, the differences which are the result of your afflicted side, and how different exercises increase your heart-rate, your breathing, and chemical surges in your brain.
9. Pay attention to your stress levels and find means of reducing them.
10. Eat better. (I’m still working on this one!)
11. There are many things we can do to improve our lives. Parkinson’s is a long game. Give yourself grace and time. Start making improvements in many of these areas, but don’t fall into the trap of thinking you need to radically reform every aspect of your life at once.
What are you most grateful for with respect to your Parkinson’s diagnosis?
The extraordinary global community of others facing this disease.
What are some goals you have set and which have you accomplished?
An early goal that I set for myself was finding a way to reduce my stress and keep working. At the time of my diagnosis, I was running an architectural firm that I was a coowner of.
I managed to sell my shares back to that company and join a prestigious nonprofit architectural firm, MASS Design Group, as a principal, while being completely transparent about my health. While work is certainly not stress-free, my stress has been greatly reduced.
What’s next?
I hope to find ways to bring my gifts as an architect to my new-found Parkinson’s community. I am interested in discovering how the design of public spaces and facilities can make life easier for PWP.
I am starting to contribute to a research center within MASS, the Deaf Space and Disability Justice Lab, where we are pushing boundaries in
radical accessibility.
What accomplishments are you most proud of?
I am most proud that my wife and I have raised two amazing young men who are determined, curious, and empathetic. I have incredible faith in their generation. With regards to PD, I am most proud that my curiosity and openness is being recognized by my community, the broader Parkinson’s community, and by my Parkinson’s heroes.
I was astonished and exhilarated when Jimmy Choi asked me to record a message of hope during his 2022 Movember advocacy campaign.
Shawn Evans is more than an architect of buildings—he’s become an architect of resilience. His commitment to balance, strength, and neurological training is not just about staying upright, but about living fully, moment to moment.
As his symptoms accelerate, Shawn describes the astonishment of performing incredible physical feats in the morning, only to face waves of slowness or temporary disability later in the day. Yet rather than dwell on what’s slipping away, he chooses to focus on what’s still possible. In that space—between movement and stillness, between ability and adaptation—Shawn has found purpose.
His story reminds us that Parkinson’s may shift the rhythm of our lives, but with courage, curiosity, and community, we can still find ways to push ourselves everyday. Every moment of regained balance, is a quiet act of defiance—and a powerful testament to what we can still become.
