An interview with Chris Anthony: I AM > I WAS: Finding Strength and Purpose Beyond Parkinson’s, From Where I Sit
Biography
I recently retired after more than 40 years in public service—spanning the Air Force, the federal civil service, and a short period as a government consultant. While consulting, I began noticing mild right-sided tremors that affected my typing, an essential skill for working from my home office. As my fine motor skills declined, I knew something was changing. On January 17, 2025, I was diagnosed with Parkinson’s disease. I’m still learning and adapting, and I share my journey and perspective through my Substack publication, From Where I Sit.
Please tell me a little about your background.
My diagnosis didn’t just change my health—it reshaped my perspective on purpose, service, and connection. I grew up in Centre, Alabama—a small rural community in the northeastern part of the state where cotton, corn, soybeans, and livestock shaped everyday life. After graduating high school in 1981, I joined the Air Force, serving in communications security and air traffic control before spending my final ten years as a First Sergeant. After retiring from the military, I joined the federal civil service, where I held positions in the Department of Defense and the Department of Homeland Security for 13 years, followed by more than three years as a government consultant.
My Parkinson’s diagnosis changed everything. I knew little about the disease, even though my dad had been diagnosed in his late seventies. Like many, my understanding was clouded by the stigma that Parkinson’s is an “old man’s disease.” After a lifetime of building teams and solving complex problems, I suddenly faced a challenge I couldn’t simply outwork. A few days after my diagnosis, my wife Christine asked if I’d consider attending the Michael J. Fox Foundation’s Parkinson’s IQ + You event in Orlando. It was a game-changer.
At the time, I was working as a government consultant, but I knew I needed to focus on my health. I am lucky that I am retirement age and was able to stop working. Since then, I’ve focused my energy on understanding Parkinson’s and helping others see it through an honest, hopeful lens.
Can you tell me more about your Advocacy?
Currently, my advocacy centers on storytelling. One of the first things newly diagnosed Parkinson’s patients hear is, “Everyone experiences Parkinson’s differently.” That’s not reassuring when you are looking for answers. Through my online publication, From Where I Sit, I share reflections about my unique experience with Parkinson’s in the hope that my words and experiences may bridge the gap for others who are living with PD and those who want to understand it.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
Clouded by the stigma of Parkinson’s, my first inclination was to keep my diagnosis secret until I couldn’t anymore. Then, everything shifted a few days after my diagnosis. Christine and I attended the Michael J. Fox Foundation‘s Parkinson’s IQ + You symposium. I was a bit apprehensive about attending. I assumed I’d be walking into a room full of people with advanced Parkinson’s, a mirror of what I thought my own future would look like. Instead, I was surprised.
The event was like other professional conferences I had attended: strong speakers, knowledgeable vendors, and an overflowing bag of brochures and freebies. But the true takeaway for me wasn’t in the sessions or handouts. It came from simply sitting in a giant ballroom surrounded by hundreds of fellow Parkinson’s warriors. I had expected to see a lot of Parkinson’s patients with advanced symptoms. I was wrong.
While some attendees had more advanced symptoms, most showed little outward sign of disease. Many were newly diagnosed like me, still figuring things out. Others were seasoned Parkinson’s veterans—living full, engaged lives, supported by care teams, exercise programs, support groups, and research fundraising campaigns. They weren’t hiding their diagnosis. They were sharing their stories openly, reshaping what it means to live with Parkinson’s.
That day, I realized: secrecy helps no one. If I were going to face Parkinson’s, I needed to be part of the conversation.
What type of goals do individuals with Parkinson’s have when seeing your Advocacy?
Many are simply looking for connection and validation. For newly diagnosed Parkinson’s patients, the hardest part isn’t the tremor—it’s the silence that often follows, the distance created when others don’t know what to say. They equate Parkinson’s with frailty or decline, not realizing how diverse and unpredictable the disease truly is. That lack of understanding creates distance at the very moment connection is most needed.
The irony is that many with Parkinson’s were once the reliable ones—the doers, the fixers, the people others leaned on. When the diagnosis comes, the roles often reverse, and the support they used to give doesn’t always come back in the same way. The result is a quiet kind of loneliness: not just being alone but being misunderstood. People mean well, but their discomfort often results in isolation—fewer invitations, less eye contact, and conversations that never happen. For someone trying to absorb a life-changing diagnosis, that isolation can feel like abandonment. That’s why awareness and storytelling matter so much.
I believe life is made up of seasons, and Parkinson’s marks the beginning of a new one. In this season, it helps to find people who truly understand—other patients, doctors, or caregivers who speak the same unspoken language of the disease. Those connections can turn isolation into belonging and help us grow in unexpected ways. When people understand what Parkinson’s really looks like, stigma loses its grip, and empathy takes its place. My goal is to help people feel seen and understood, while offering my perspective on how to adapt.
What type of training and how long are the programs?
My advocacy isn’t a formal program—it’s the story of my Parkinson’s experience, shared through an online publication. My goal is to blend lived experience with insights from neurologists, researchers, and the Parkinson’s community at large sharing what has worked for me, and what hasn’t, from where I sit.
What effect can your Advocacy have on an individual with Parkinson’s?
I want my advocacy to remind others that Parkinson’s changes many things, but it doesn’t have to erase who we are. If my story helps someone find a bit of humor in the challenging moments, patience in the slow ones, and purpose in the everyday, then I’ve done something worthwhile. We may not choose this path, but we can choose how we walk it.
What would you like to see as a future goal for your Advocacy?
I plan to continue From Where I Sit, my online publication, where I chronicle my Parkinson’s journey. I strive to produce posts that are easy to understand, but many readers still have questions. I want to be responsive to those questions. Many readers are seeking a sense of community and acceptance, so timely responses are important to me.
Beyond my blog, I want to advocate for greater public understanding of Parkinson’s—because awareness drives empathy, and empathy drives action. The veterans’ community has shown what’s possible when people organize around a shared mission and tell their stories with authenticity. Over time, that approach changed public perception and built lasting support for veterans’ programs within Congress and the executive branch.
While not perfect, Congress has rightly stepped up to care for veterans whose Parkinson’s was linked to exposures in Vietnam, at Camp Lejeune, and from burn pits in more recent conflicts. That same sense of responsibility should extend to civilians who have been unknowingly exposed to chemicals and environmental toxins that remain unregulated or insufficiently banned. Parkinson’s doesn’t discriminate between uniforms and neighborhoods—the root causes and suffering are shared.
I’d like to help apply lessons from the veterans’ advocacy model to the Parkinson’s community—using real stories, clear communication, and a unified message to push for stronger environmental protections, better research funding, and more compassionate care for everyone affected by this disease.
Additionally, I want to be an advocate for those with later-onset Parkinson’s disease (LOPD). Many who are diagnosed later in life are managing other health conditions, which adds complexity to treatment and daily life. Navigating multiple medications and care plans can be overwhelming, and I hope to help shine a light on that often-overlooked part of the Parkinson’s community.
What events do you participate in?
I participate in awareness initiatives such as the Gray Matters campaign, online advocacy events, and local Parkinson’s support and exercise programs. I also collaborate with other writers and patient-advocates who share a passion for education and storytelling. I hope to participate in additional events in Central Florida as they occur.
How does this also assist the caregivers?
Caregivers walk this path alongside us. By being open about what PD feels like from the inside, I hope to help them better understand the challenges, emotions, and small victories their loved one’s experience.
How can someone get in touch? What is your website?
You can connect with me through my Substack at https://chrisanthony.substack.com or on Instagram, Threads, and Facebook under the handle @FromDutyToDiagnosis.
How can others also become advocates for awareness?
Not everyone can start a foundation. Many can’t participate in fundraising events because of advanced symptoms, and others can’t afford to donate after Parkinson’s forced them to stop working. Advocacy doesn’t have to be about fundraising. Advocacy can be as simple as sharing your journey.
My advice is to start small and keep it authentic. Share your story however you feel comfortable. Wear gray on the first of each month for #GrayMatters, and support others in one of the many online Parkinson’s forums. Advocacy really does begin with conversation. To raise public awareness, we need everyone to share their experiences.
What do you wish people understood about living with Parkinson’s that isn’t visible?
I want people to know that the hardest work isn’t what you see—it’s what happens behind the stillness. Most people only see us when we’re at our best, during those “on” periods when medication and all the behind-the-scenes effort—exercise, therapy, planning—make the disease look almost invisible. What they don’t see are the days that follow: the fatigue, the sleepless nights, the recovery it takes after even a simple outing. The tremor might draw attention, but it’s the invisible weight that requires the most strength.
In your opinion, what is the key to effective advocacy?
I believe that the key to effective advocacy is empathy—but not empathy alone. It’s about finding a way to advocate that truly resonates with who you are. Advocacy isn’t as effective if it’s done just for advocacy’s sake. The most powerful voices come from people who’ve found a way to connect their passion to their purpose—whether that’s writing, speaking, creating, organizing, or simply listening.
Each of us—patients and caregivers—experiences Parkinson’s differently, so our advocacy should reflect that diversity. Different voices and different styles, all with the same goal, will impact understanding and awareness. Empathy gives you the reason; passion gives you the method. Together, they make advocacy human, not mechanical.
How can we better fundraise to support a cure for Parkinson’s?
By personalizing the cause. When people see real faces and hear real stories, they give not just money—but heart. Parkinson’s fundraising becomes most powerful when patients, researchers, and storytellers come together to connect science with humanity.
At the same time, we need to advocate more strongly for government funding that matches the scale and urgency of this disease. Private donations and grassroots campaigns are essential, but a true push toward a cure will require the same national commitment we’ve seen for other major health challenges. That means more visibility, more unified advocacy, and a consistent message to policymakers: Parkinson’s isn’t rare—it’s underrecognized—and it deserves attention at every level.
Every patient has a story, and every story has the power to move donors, legislators, and researchers to act. I believe that if we combine empathy with evidence and use our collective voice to push for change, we won’t just raise funds; we’ll increase momentum toward a cure.
What other activities do you undertake to help improve and support your daily living Eg exercise and alternative remedies?
I stay active through walking and physical therapy, and I practice consistency. I also like to attend spin classes at the local YMCA and plan to begin Rock Steady Boxing as soon as my round of physical therapy ends. As a LOPD patient who just celebrated my 63rd birthday, I must manage other medical issues in addition to Parkinson’s. Music, woodworking, and time outdoors help me keep both body and mind engaged.
Why should people who don’t have Parkinson’s care about this?
People who don’t have Parkinson’s should care because this disease is growing faster than any other degenerative neurological condition—and much of that growth is tied to the toxic chemicals we continue to allow in our environment. The same exposures that may have caused Parkinson’s in veterans or workers decades ago are still present in the products we use and the air we breathe. That means our children and grandchildren are being exposed right now to substances that could trigger Parkinson’s 20 or 30 years from now.
Advocating for change isn’t just about supporting those already living with the disease—it’s about protecting the future. We owe it to the next generation to demand better and stronger environmental safeguards, stricter chemical regulations, and research that focuses on prevention as much as treatment. Awareness, education, and policy reform can make that difference, but it starts with people who don’t have Parkinson’s choosing to care before it reaches their doorstep.
Have you had any family members or relatives affected by Parkinson’s disease?
Yes. When my father was in his seventies, he developed a tremor in his right hand. My mother was worried, but his doctor said, “Don’t worry. Old people shake.” Not long after, Dad fell while walking to the mailbox. The next day, he couldn’t get out of his recliner. He was diagnosed with spinal stenosis and referred for surgery. I went with him to the surgical consultation. After a full evaluation, the surgeon knelt beside him and asked, “Mr. Anthony, has anyone ever talked to you about Parkinson’s disease?”
The diagnosis came soon after, and no one ever talked to us about building a care team or recommended finding a support group. Beyond medication, there was little support. My father’s experience gave me perspective; mine gives me purpose. No family should ever face this disease alone or be dismissed by the very system meant to help them.
If you had one song that would tell us more about you or represent your life, which song would it be?
Anyone who knows me will expect me to invoke a Bob Seger tune, and Against the Wind would be a great answer. The song is a reflection on endurance — the shift from youthful freedom to the steady effort of simply keeping pace – it’s timeless. As a Parkinson’s patient, “Against the Wind” captures what it feels like to move against resistance that never fully lets up.
However, I recently heard Zac Brown and Dolly Parton’s new song “Butterfly,” and it instantly felt personal, as if it had been written for those of us living with Parkinson’s. It’s a song about transformation — about finding strength and grace in the middle of struggle. Lines like “Innocence doesn’t last for long, but whatever don’t kill you makes you strong” and “You’re so much stronger than you think you are” will resonate with anyone living with Parkinson’s. They speak to the quiet resilience that forms when life forces you to adapt, not just endure.
But it’s the verse “Those that don’t matter often mind, and those that mind don’t matter — don’t you pass them by” that resonates most deeply with me. As a Parkinson’s patient and advocate, I can’t afford to “pass them by.” The people who misunderstand Parkinson’s need to be reached, not ignored. Awareness grows only when we meet judgment with understanding and ignorance with education. In that sense, Butterfly isn’t just a song about surviving — it’s about becoming.
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
I will leave this quote: “I AM > I WAS.”
I offer that quote as a goal rather than as a reminder. I’ll never be the same person I was before Parkinson’s — I’ve had to let go of things I used to do, and I move through life more slowly now. But that doesn’t mean the version of me that’s emerging can’t be greater than the one I used to be. Growth doesn’t end with diagnosis; it just takes a new form.
My goal has always been to be better today than I was yesterday, and Parkinson’s doesn’t have to change that. It might make the journey harder, but it also makes each step more intentional — and maybe that’s its own kind of progress.
_____________________________________________________________
TogetherForSharon® In memory of my mother, Sharon to voice awareness & hope for a Parkinson’s Disease cure. Sharon’s Son, George