An interview with Christopher Ezernack, Against Probability: Parkinson’s, Autonomy, and the Refusal to Disappear
Biography
I am a physics and cognitive science student with a minor in mathematics and a quantum computing certification, and I live with early onset Parkinson’s and complex movement disorders.
Please tell me a little about your background.
I developed neurological symptoms in early childhood and was misdiagnosed for many years before being identified as having a parkinsonian syndrome. I was homeless, disabled, and medically neglected, and I still returned to school and rebuilt my life through science, research, and persistence.
Can you tell me more about your Advocacy?
My advocacy focuses on honest awareness, patient dignity, institutional accountability, and pushing real research forward for complex and early onset Parkinson’s. I speak about what the disease does to people, not the sanitized version.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
My passion is understanding the brain, consciousness, and human autonomy, and Parkinson’s forced me into that work. I did not choose advocacy; it became unavoidable when the system failed me and my family.
What type of goals do individuals with Parkinson’s have when seeing your Advocacy?
They want to feel seen, believed, and taken seriously. Most are not looking for motivation, they are looking for honesty and answers.
What type of training and how long are the programs?
My work is research driven and advocacy based rather than a formal training program. It involves ongoing collaboration with scientists, clinicians, and patient communities.
What effect can your Advocacy have on an individual with Parkinson’s?
It can give them language for what they are experiencing and permission to stop minimizing their own suffering. It can also give them the confidence to demand better care.
What would you like to see as a future goal for your Advocacy?
Earlier diagnosis, real funding for innovative research, and systemic reform in how neurological patients are treated. I want fewer people to fall through the cracks the way I did.
What events do you participate in?
Research initiatives, academic collaborations, patient advocacy efforts, and awareness campaigns. I also engage in policy and media discussions when possible.
How does this also assist the caregivers?
It validates what they live with every day. Caregivers are often carrying the weight quietly and I make sure they are not erased from the conversation.
How can someone get in touch? What is your website?
Through my website at https://entropy-physics-ai.com and through my social platforms listed below.
Website
https://entropy-physics-ai.com
Facebook personal
https://www.facebook.com/christopher.ezernack.92
Facebook public shares
https://www.facebook.com/share/16zKbRYDRd
https://www.facebook.com/share/1EsLMyGZqo
Instagram professional
https://www.instagram.com/reop_solutions
Instagram personal
https://www.instagram.com/reallyjustme34
LinkedIn
https://www.linkedin.com/in/christopher-ezernack-b68328340
GitHub
https://github.com/ezernackchristopher97-cloud
How can others also become advocates for awareness?
By speaking honestly, challenging stigma, supporting research, and refusing to downplay the disease. Advocacy is not about being positive, it is about being real.
In your opinion, what is the key to effective advocacy?
Truth without dilution. Comfort is not the goal, progress is.
How can we better fundraise to support a cure for Parkinson’s?
By funding high risk, high reward research instead of only safe legacy projects. We will not solve this by repeating the same approaches.
What other activities do you undertake to help improve and support your daily living eg exercise and alternative remedies?
Physical therapy, movement-based exercises, strict medication management, nutritional support, and cognitive work through research and creative expression. For me, science is also therapy. I am also a pianist. Music transcends even the most decoherent neurological diseases.
Why should people who do not have Parkinson’s care about this?
Because neurological disease does not discriminate, and it will touch almost every family. What we tolerate now becomes the standard later.
Have you had any family members or relatives affected by Parkinson’s disease?
Yes. My grandfather had Parkinson’s and my grandmother had Lewy body dementia.
Additional perspective on living with Parkinson’s and its impact on your work
Living with Parkinson’s gives you a direct lens into how fragile autonomy really is. Your mind, your body, and even your perception of reality can separate from who you know yourself to be, and in Parkinson’s that coherence becomes diluted. Losing control of your own interface with the world forces you to confront fear, uncertainty, and identity, and much of my scientific work was born from that confrontation. Real knowledge is often forged through fear and pain and how we choose to respond rather than retreat.
If you had one song that would tell us more about you or represent your life, which song would it be?
What’s Going On by Marvin Gaye
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
You are not broken. You are navigating something most people cannot see. And you are allowed to demand better.
________________________________________________
TogetherForSharon® In memory of my mother, Sharon to voice awareness & hope for a Parkinson’s Disease cure. Sharon’s Son, George