What I Wish My Neurologist Had Told Me in 1997

If I could go back to 1997 and sit across from those brilliant neurologists — the ones trained at places like Harvard and Stanford — I'd still be grateful for their care. They were doing their very best with everything they knew at the time. But looking back, here's what I really wish one of them had said to me, kindly and straight from the heart.

"Hey Rob, the symptoms you're describing — the tremors, the stiffness, the way your body is moving differently — look a lot like Parkinson's disease right now. The medications we're going to try are designed to help with those dopamine issues. They help so many people feel better, but I want to be honest with you: they may or may not be the perfect match for what's happening in your case. We're treating the picture we see today, and there's still a lot we don't fully understand yet. That's okay — we'll keep figuring this out together."

How much that kind of honest conversation would have meant to me. It would have felt like a gentle hand on the shoulder instead of a neat little box with a promised quick fix.

Because back then, in 1997, we simply didn't know as much about how old head injuries could quietly show up decades later and create symptoms on the Parkinson's spectrum.

My story as a veteran: injuries from 1983–1985 showing up in 1997

I'm a US Army veteran. Between 1983 and 1985, I sustained four traumatic brain injuries involving diffuse axonal injury (DAI) — the kind of widespread shearing of nerve fibers that can be hard to spot at the time. Over four decades later, we now suspect CTE (chronic traumatic encephalopathy) is also part of the picture.

The first clear symptoms hit in 1997: Parkinson's-like tremors and stiffness, plus anger issues that didn't seem to fit neatly anywhere.

As the guy living it every single day, I noticed patterns — good days mixed with tough ones, sudden fatigue, behavioral shifts — that a short office visit could easily miss. Heather saw it all up close from home. We both had to become advocates, keeping notes and asking questions, because we had to.

Back then, the connection between multiple old TBIs and later parkinsonism wasn't widely discussed. Healthcare is still catching up with how these injuries can lead to long-term issues like traumatic encephalopathy syndrome (TES) and CTE. The movie Concussion with Will Smith helped bring public attention to how repeated head trauma can affect people years or decades down the line — whether from sports, combat, car accidents, or other impacts.

Research published in Brain has confirmed what we lived through: diffuse axonal injury from closed head trauma can produce delayed neurological deterioration that emerges years or decades after the original injury, often presenting as parkinsonism, cognitive decline, or behavioral change. (Kopelman, M.D. Brain, 2002)

What it felt like living it day by day

Some days felt pretty good. Others were really tough. The sudden waves of fatigue, the anger, the small changes in how I moved or felt emotionally — those subtle shifts didn't always line up perfectly with what we expected from a textbook Parkinson's diagnosis.

Heather noticed the physical challenges and the behavioral changes that come with brain injuries. Together we learned to speak up gently, keep simple notes, and ask questions. We became each other's biggest advocates, just like so many of you do for your loved ones.

The medications journey and the value of honesty

I took Parkinson's medications for over nine years. They were part of managing symptoms based on the understanding at the time. Then my insurance changed, and the neurologist stopped them. He didn't think I was benefiting enough because it didn't look like classic Parkinson's disease to him.

More than a decade later, I was put back on a medication specifically for a Parkinson's spectrum disorder — and it has helped me tremendously.

Looking back, more upfront honesty about the uncertainty would have made a real difference. Something like: "This doesn't match the textbook perfectly, and we don't have all the answers yet. Let's keep watching closely, track the details, and adjust as needed."

Labels can feel solid at first. But when symptoms don't respond exactly as expected, it helps to know it's okay to keep exploring.

As the patient, you live with the daily realities. Your caregiver often spots things no one else does. Simple notes on symptoms, triggers, past injuries — even ones from decades ago — and behavioral changes can help fill in the picture, especially when doctors are handling heavy patient loads.

The gift of honest "I don't know yet"

Sometimes a label feels comforting in the moment, but it can make it harder to keep exploring when things don't improve the way we hoped. What would have helped most was hearing something warm like:

"This doesn't match perfectly with what we usually see, and we don't have all the answers right now. But let's keep looking together, okay?"

Research on late-presenting TBI supports this kind of humility. A study published in the Journal of Neurotrauma found that the full neurological consequences of diffuse axonal injury may not become clinically apparent for years after the initial trauma — meaning a clear picture at the time of injury does not rule out significant long-term progression. (Povlishock & Katz, Journal of Neurotrauma, 2005)

In my case, the initial path followed the Parkinson's-like presentation. With time, persistence, better understanding, and testing, the picture clarified: it was tied to those multiple diffuse axonal injuries from the early 1980s. The later medication adjustment for the Parkinson's spectrum has made a real, positive difference.

Why advocacy matters for veterans and families

These invisible injuries don't just affect pro athletes. They impact military veterans, youth sports participants, car accident survivors, survivors of physical abuse, and everyday people whose brains took hits that show up much later.

The healthcare system is making progress, but it's not all the way there yet for every case. That's one reason Heather and I started Robbins Nest Alliance — to offer a practical "hold on a minute, let's look at this together" resource for families navigating TBI, Parkinson's spectrum issues, behavioral changes, physical challenges, and suspected CTE.

If your loved one's symptoms feel confusing or the first explanation doesn't quite fit, trust what you see at home. Speak up clearly and respectfully. Questions like "Could an old head injury from years ago still be connected?" or "What else might explain these patterns?" can open doors.

A few straightforward steps that helped us:

• Keep a simple log of symptoms, what makes them better or worse, and any history of head trauma — no matter how long ago.
• Share the real daily picture, including the little details a quick visit might miss.
• Bring in input from different specialists when the pieces don't line up.

Let's keep moving forward

Medicine keeps evolving. Clearer answers often come when patients, families, and doctors stay open and share information honestly.

You know your situation best. Keep paying attention to the details, keep asking thoughtful questions, and remember that steady advocacy can help move things forward — one honest conversation at a time.

— Rob Robbins
Co-Founder, Robbins Nest Alliance

Related reading

• What Retrograde Amnesia Actually Feels Like — And What Caregivers Need to Know
• CTE vs Dementia: What Families Need to Know
• How Repeated Head Impacts Can Lead to CTE
• GHOST OPS: Uniting Veterans Against TBI and PTSD
• Caregiver Support Resources
• Military & Veteran Brain Injury Resources

Resources cited in this article

• Kopelman, M.D. — Disorders of Memory. Brain, 2002
• Povlishock & Katz — Update of Neuropathology and Neurological Recovery After Traumatic Brain Injury. Journal of Neurotrauma, 2005

Robbins Nest Alliance is a 501(c)(3) educational nonprofit focused on brain injury, dementia, Parkinson's, PTSD, FND, and CTE. We publish free, medically-cited resources for patients, caregivers, and families — because the best information shouldn't be behind a paywall.

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