Still Living With Parkinson's: Lessons Learned After 15 Years

02/14/2026

When the Words Don’t Come: Parkinson’s, Cognition, and the Fear No One Talks About
One of the most unsettling moments in Parkinson’s disease isn’t physical. It’s cognitive. It’s the moment when you’re mid-sentence — in a meeting, on a call, at a dinner table — and the word you need simply doesn’t arrive.
You can see it. You know it. But you can’t retrieve it.
And in that split second, something else shows up. Fear.
For professionals especially — lawyers, executives, consultants, leaders — identity is often built on precision, speed, and articulation. When word retrieval slows, it feels personal.
It feels like decline.
But here’s what I’ve learned over 13 years of living with Parkinson’s: Word retrieval delay is not the same as cognitive loss. Processing speed change is not the same as loss of intelligence. And a pause is not incompetence.
Parkinson’s can affect executive functioning, processing speed, and verbal fluency. That’s neurological reality. But what often causes more damage than the symptom itself is the story we attach to it.
“I’m slipping.”
“People are noticing.”
“I can’t keep doing this.”
And that internal narrative creates anxiety. Anxiety makes retrieval harder. And the cycle feeds itself.
Here’s what tends to happen:
You lose a word. You panic internally. Adrenaline rises.
Your thinking slows further. Now the word is even harder to retrieve.
It’s not just Parkinson’s.
It’s Parkinson’s plus pressure.
I see this repeatedly. The cognitive symptom is manageable. The fear of it is what becomes destabilizing.
And the good news is this:
The fear can be managed.
The response can be trained.
If you work in an environment where:
• You are expected to respond quickly
• You are leading meetings
• You are advising clients
• You are negotiating or advocating
Even a slight delay can feel catastrophic.
But here’s the truth:
Most pauses are far more noticeable to you than to anyone else.
And most people interpret a pause as thoughtfulness — not deficiency.
The real question becomes:
How do you stay confident when the words don’t come?
Over time, I’ve learned practical strategies:
• Substituting simpler language instead of freezing
• Using time-buying phrases strategically
• Slowing conversations deliberately
• Preparing bullet notes before high-pressure meetings
• Being mindful of medication timing
These are not signs of decline.
They are signs of leadership.
Because leadership is not about pretending nothing has changed. It’s about adapting intelligently.
This is the deeper issue. When cognition shifts, many fear they are losing their identity.
“I used to be sharp.”
“I used to be fast.”
“I used to be articulate.”
But speed is not wisdom. And retrieval delay is not insight loss.
Your experience, judgment, and strategic thinking remain intact.
Parkinson’s may change the pace — but it does not erase the substance.
Because this topic generates so much anxiety, I’ve created a practical, structured workbook:
“When the Words Don’t Come: A Practical Workbook for Navigating Cognitive Changes in Parkinson’s Disease.”
Inside, you’ll find:
• Exercises to identify your specific triggers
• Tools to break the anxiety loop
• Word-retrieval strategies you can use immediately
• Workplace planning prompts
• A personal confidence rebuilding framework
I hope that you find it useful.
This is not about decline. It’s about control.
Cognitive changes in Parkinson’s are real. But so is your capacity to adapt. The words may take longer. But your value has not diminished. And the sooner you understand what is happening — and develop a plan — the more confidently you can continue leading. If this resonates with you, download the workbook [LINK IN COMMENTS BELOW] and begin building your personal strategy.
You are not losing yourself. You are learning how to navigate differently. And that is strength.

02/11/2026

One of the most common—and emotionally loaded—questions I hear from people living with Parkinson’s is this:
“Should I delay taking medication as long as possible?”
It’s often asked quietly, sometimes apologetically, as though taking medication too soon is a kind of failure. As if grit, willpower, or denial might somehow slow the disease if we just try hard enough.
I understand the hesitation. I really do. I’ve lived with Parkinson’s for years, and I’ve had that internal debate myself. But over time, experience has taught me something very important—something I wish more people heard earlier.
The purpose of Parkinson’s medication is not to “give in” to the disease. The purpose of medication is to help you live your life.
Somewhere along the way, many of us absorb the idea that delaying medication is virtuous. That taking it early means the disease has “won.” That once you start, there’s no turning back.
None of that is true.
Parkinson’s medication is a tool. Like glasses for poor eyesight or insulin for diabetes. It doesn’t change who you are, and it doesn’t define the severity of your disease. It simply helps your brain do what Parkinson’s has made harder.
There is no prize for suffering longer than necessary.
Parkinson’s is not just about tremor or stiffness. It’s about energy, mood, confidence, mobility, sleep, and the ability to engage with the people and activities that matter to you.
If medication helps you:
• move more freely
• think more clearly
• feel more like yourself
• participate more fully in your life
then it is doing exactly what it is meant to do.
Delaying medication when symptoms are already interfering with daily life doesn’t preserve anything. It often just shrinks your world sooner than it needs to.
Let’s name what’s really going on for many people.
There’s fear that medication will “stop working.” Fear of side effects. Fear of acknowledging progression. Fear of crossing an invisible line that makes Parkinson’s feel more real.
Those fears are human. They deserve compassion—not judgment. But fear is not a treatment plan.
Medication can be adjusted. Doses can change. Timing can evolve. What can’t be replaced is time spent living well.
None of this means medication should be taken blindly or without discussion. It should always be a thoughtful decision made with your neurologist, based on your symptoms and your life.
But the question I encourage people to ask is not “How long can I avoid medication?”
It’s this: “Would taking medication now help me live better today?”
If the answer is yes, then delaying serves no real purpose.
Choosing medication is not surrender. It’s an act of self-respect.
Parkinson’s already asks a lot of us. It challenges our bodies, our identities, and our sense of control. Using available tools to protect your quality of life is not weakness—it’s wisdom.
You deserve more than just getting through the day. You deserve to live it.

02/07/2026

Honoured to be part of this esteemed faculty to discuss this important subject.

02/07/2026

Deal With the Cards You’re Dealt (Instead of Comparing Hands)

One of the most persistent distractions that comes with Parkinson’s is comparison.
It slips in quietly. A comment in a clinic waiting room. A post in an online group. A story about someone who was diagnosed years ago and is still doing things you’ve had to stop doing. Before you realize it, you’re no longer paying attention to your own experience—you’re measuring it against someone else’s.
Parkinson’s doesn’t invite comparison, but it certainly allows it. The diagnosis comes with a single name, yet it unfolds in countless ways. Symptoms vary. Timing varies. Impact varies. And still, we instinctively look sideways, searching for meaning in someone else’s trajectory.
That search almost always leads us away from ourselves.
I’ve learned that comparison is rarely about curiosity. More often, it’s about control. We compare because we want certainty. We want reassurance that we’re doing “okay” or early warning that something worse is coming. But Parkinson’s doesn’t reward that kind of forecasting. Other people’s experiences don’t predict ours—they just occupy our attention.
And attention is a limited resource.
Living with Parkinson’s already requires careful allocation of energy. Physical energy, certainly—but also mental and emotional energy. When we spend that energy tracking how we stack up against others, we lose the opportunity to respond thoughtfully to what’s actually happening in our own bodies and lives.
Comparison also carries a quieter cost: it interferes with identity.
Before Parkinson’s, many of us knew who we were by what we did—our work, our pace, our independence, and our reliability. After diagnosis, those markers start to shift. Comparison steps in at exactly the wrong moment, offering an unhelpful question: Why can they still do this when I can’t?
That question doesn’t clarify identity. It erodes it.
At some point, I realized that dealing with Parkinson’s effectively had very little to do with how others were doing and everything to do with how honestly I was willing to engage with my own reality. Not the ideal version. Not the past version. The current one.
Dealing with the cards you’re dealt means acknowledging limits without narrating them as failure. It means recognizing that adaptation is not a downgrade—it’s a response. It also means letting go of the idea that Parkinson’s progress can be ranked or judged.
Some people lose certain abilities early and retain others for years. Some face visible symptoms that draw attention; others carry invisible burdens that are just as disruptive. There is no “better” or “worse” hand—only different combinations of challenge.
Comparison flattens that complexity. It turns a deeply personal experience into a crude hierarchy.
When we stop comparing, something subtle but important happens: we regain agency. Not control over the disease, but control over where we place our focus. We begin asking more useful questions:
• What is asking more of me right now?
• What needs adjusting—not fixing, just adjusting?
• What assumptions am I still carrying from a version of myself that no longer exists?
These are not easy questions, but they are productive ones.
Parkinson’s has a way of forcing attention back into the present. Comparison pulls us into imagined futures and alternate realities—lives we might have had, paths others seem to be on. Dealing with the cards you’re dealt brings you back to the table you’re actually sitting at.
I don’t think comparison ever disappears entirely. It’s human, especially when uncertainty is involved. But we can learn to notice when it stops being informative and starts becoming noise. When it drains rather than guides. When it distances us from ourselves.
At that point, the work is not to think differently—it’s to return. To your body. Your circumstances. Your values. Your version of a good day.
This life with Parkinson’s is not about playing the same game as everyone else. It’s about learning the rules of the one you’re in, making thoughtful moves, and refusing to waste energy wishing you’d been dealt a different hand.
The cards are already on the table. The only meaningful question is how you choose to play yours.

01/31/2026

Taking Your Parkinson’s on Vacation
I recently noticed something curious. I took my Parkinson’s on vacation.
Not metaphorically. Not in denial. I packed it right alongside my meds, routines, expectations, and quiet worries—because Parkinson’s doesn’t stay home just because you change your scenery.
And yet… something shifted.
My Parkinson’s didn’t disappear. But it behaved differently.
At home, Parkinson’s lives inside routine.
The same rooms. The same clocks. The same expectations—both mine and other people’s.
Routine is often praised as essential for Parkinson’s management, and it is. But routine also carries weight. It comes with an invisible checklist:
• Am I moving well today?
• Did I take my meds on time?
• How noticeable is the tremor?
• How much energy do I need just to get through this ordinary day?
On vacation, that weight lightened—not because Parkinson’s was gone, but because life was different.
The rules were fewer. The pace was softer. The day unfolded instead of being managed.
And Parkinson’s seemed to notice.
Let’s be clear: vacation isn’t stress-free.
There are airports, cramped airline seats, unfamiliar beds, disrupted sleep, logistics, and fatigue. But this kind of stress is novel, not chronic.
Chronic stress is relentless. It hums in the background of daily life, especially when you’re living with a progressive neurological condition. Parkinson’s doesn’t respond well to that kind of stress—and many of us feel it in our bodies long before we can explain it.
On vacation, stress changes shape. It becomes situational. Temporary. Contained.
And when stress changes, symptoms often do too.
Not magically. Not permanently. But noticeably.
At home, attention is inward.
You monitor your body constantly. You become both the patient and the observer.
In a new environment, attention shifts outward. You’re noticing streets, menus, landmarks, light, sounds, faces. You’re navigating instead of monitoring.
That shift matters.
Parkinson’s symptoms are deeply influenced by attention. When the spotlight moves away from the body—even briefly—the body often responds with a little more ease.
Not perfect movement. Just easier movement. And sometimes, that’s enough to feel like relief.
Something else surprised me.
I wasn’t “exercising.” I wasn’t “working on my gait.” I was walking because I wanted to see what was around the corner.
Purpose changes movement.
When movement is attached to curiosity, connection, or enjoyment, it often looks smoother than movement performed because it’s “good for you.” Many people with Parkinson’s notice this intuitively—on vacation, at concerts, while gardening, or when absorbed in conversation.
Parkinson’s doesn’t always interfere with movement itself. It interferes with automatic movement.
Purpose helps bypass that.
This may be the most important part.
On vacation, I wasn’t primarily “a person with Parkinson’s.”
I was a traveler. A partner. A guest. A witness to something new.
That identity shift is subtle—but powerful.
When Parkinson’s isn’t front and centre in how you see yourself, posture changes. Confidence changes. Self-talk softens. And Parkinson’s, once again, responds.
The disease doesn’t define us—but daily life sometimes forces it to lead the conversation.
Vacation gave me a pause from that narrative.
Of course, when I returned home, many symptoms returned too.
Parkinson’s is still Parkinson’s. Fatigue caught up. Routine resumed. Familiar pressures slipped back into place.
But something stayed with me.
The realization that Parkinson’s is deeply context sensitive.
That how we live—how we pace, frame, notice, and identify ourselves—can influence how symptoms show up, even when the disease itself hasn’t changed.
That matters.
Not everyone can travel. Not everyone wants to. And no one should feel pressured to “get away” as a solution.
But maybe the real lesson isn’t about travel.
Maybe it’s about asking:
• Where can I loosen routine, just a little?
• Where can I shift attention outward?
• Where can I move with purpose instead of obligation?
• Where can I give my identity a break from Parkinson’s?
Because if Parkinson’s feels lighter when life feels wider, then the work isn’t escaping life—it’s expanding it.
Even at home. Even in small ways.
Even today.

01/24/2026

The Care Partner: The Role No One Applies For

Parkinson’s disease is often described as an individual diagnosis. One person sits in a neurologist’s office and hears the words: Chronic. Incurable. Progressive. One name is written on the chart. One name on the pillbox label. One body becomes the focus of clinical attention.

But Parkinson’s never belongs to just one person.

From the moment of diagnosis, a second role is created—usually without discussion, consent, or preparation. The role of care partner. Not a nurse. Not saviour. Not a sidekick. Something far more complex and far more human.

I say this not as an observer, but as someone who has lived with Parkinson’s for over a decade. My disease has progressed, adapted, surprised me, and forced me to renegotiate my relationship with my own body. But alongside that journey has been another, quieter one—the evolution of the person who walks beside me.

Care partners rarely recognize themselves in the role at first. They are spouses, children, colleagues, and friends. They start by “helping out,” filling in small gaps that appear almost imperceptibly: driving a little more, reminding a little more, and compensating quietly.

Over time, those gaps widen.

What makes the role so difficult is that it is undefined. There is no training manual for how to help without diminishing. No checklist for when support becomes supervision. There is no clear line between loving assistance and unintended control.

From the inside, I can tell you this: the greatest challenge is not the physical care. It is the emotional calibration. Knowing when to step in—and when to step back.

Care partners carry an enormous cognitive and emotional load that is rarely acknowledged. They track symptoms. They anticipate fluctuations. They remember medication schedules, appointments, and subtle changes in mood or movement.

They also absorb the fear.

Fear of progression. Fear of the future. Fear of saying the wrong thing. Fear of being honest. Fear of being honest too soon. Fear of doing too much. Fear of not doing enough.

What often goes unseen is how much restraint this requires. How often care partners choose silence over correction. Patience over frustration. Strength over vulnerability.

And yet, they are rarely asked how they are doing.

From my perspective, the most meaningful care is not about doing things for someone—it is about preserving dignity with them.

Parkinson’s already takes enough. It interferes with autonomy, confidence, and identity. When care is delivered without sensitivity, even with the best intentions, it can unintentionally accelerate those losses.

The most effective care partners understand this intuitively. They offer support without spectacle. They collaborate rather than command. They allow room for independence—even when it would be easier to take over.

This requires emotional intelligence, not instruction.

Parkinson’s does not just change the person with the diagnosis. It reshapes relationships.

Care partners grieve, too. They grieve the ease that once existed. The predictability. The unspoken assumptions about the future. They often do this privately, believing they must remain strong, positive, or encouraging.

But resilience is not silence.

Care partners need space to acknowledge their own fatigue, frustration, and fear—without guilt. Without feeling that doing so somehow detracts from the person with Parkinson’s.

It does not.

The best care partnerships I have seen—and experienced—are grounded in mutual respect. They are not hierarchical. They are adaptive. They evolve as the disease evolves. They are built on conversation, not assumption. On listening, not rescuing. On shared problem-solving, not unilateral decisions.

Parkinson’s may alter roles, but it does not erase personhood.

The individual with Parkinson’s is still a partner, still a professional, still a decision-maker, still themselves.
The care partner’s role is not to replace that identity—but to protect it.

If you are a care partner, know this: your role matters more than you may ever hear. Not because of what you do, but because of how you are present.

And if you are living with Parkinson’s, as I am, take the time to recognize the person beside you—not just for their support, but for the quiet strength it takes to walk a road they did not choose but chose to stay on it with you.

Parkinson’s is a shared journey. The diagnosis may belong to one of us—but the resilience belongs to both.

01/17/2026

"Resilience" is a word we use easily. Too easily.

Before Parkinson’s, I understood resilience in the way most professionals do: push through, adapt quickly, and don’t let obstacles slow you down. In law, resilience is almost a job requirement. You absorb pressure, manage uncertainty, and keep moving. The assumption—rarely stated, but always present—is that whatever you are dealing with will eventually pass.

Parkinson’s changes that assumption.

I’ve lived with Parkinson’s for over a decade now, and one of the lessons it teaches is this: there is no “bouncing back.” There is no return to a former baseline. The disease is progressive and unpredictable. Whatever resilience means in this context, it cannot rely on the idea that “normal” is waiting for you on the other side.

For a long time, my version of resilience looked familiar. I compensated. I worked harder. I masked symptoms. I told myself—and others—that nothing had really changed. From the outside, that probably looked like strength. In reality, it was resistance. And resistance, I learned, has a cost.

Real resilience began when I stopped trying to win an argument with my diagnosis.
With Parkinson’s, resilience becomes less about endurance and more about adaptation. It’s about doing things differently, not doing more. It’s about rethinking how you work, how you plan, how you conserve energy, and how you define a good day.

That shift is not instinctive, especially for people who have built careers on competence, consistency, and control.

There is also a psychological reckoning that doesn’t get talked about enough. Parkinson’s forces you to renegotiate your identity—not once, but repeatedly. What you can do, changes. What you need, changes. What matters, changes. Resilience, in this sense, is not a fixed trait; it’s an ongoing relationship with uncertainty.

One of the hardest lessons for me was understanding that vulnerability is not the opposite of resilience. In fact, it may be one of its most mature expressions. Deciding when and how to disclose a diagnosis, asking for accommodations, or accepting help all require judgment, courage, and emotional labour. Pretending nothing is happening might feel safer in the short term, but it is rarely sustainable.

Parkinson’s also redefines success. Metrics like speed, stamina, and output become unreliable and, at times, unfair. Resilience cannot be measured solely by how much you produce or how seamlessly you perform. Sustainability matters more than endurance. Meaning matters more than momentum. Presence matters more than perfection.

And then there is grief.

Parkinson’s involves a series of losses—some obvious, some subtle, many cumulative. Resilience does not mean ignoring those losses or rushing past them. It means acknowledging them, making room for them, and still choosing to engage with life and work in ways that are honest and sustainable. You cannot be resilient without first being truthful about what has been lost.

If Parkinson’s has taught me anything, it’s that resilience is not a heroic stance against adversity. It’s quieter than that. More practical. More human.

It’s learning how to live well in changing conditions.
It’s adjusting expectations without abandoning purpose.
It’s asking different questions when old answers no longer fit.
Resilience, rewritten, is not about returning to who you were.

It’s about becoming someone who can live fully—even as the ground continues to shift.

10/16/2025

The subject of "adaptive accommodation" and the study of Parkinson's at the ISS! discussed - thanks to Ed for the opportunity to share but as, importantly, to learn.

Guidance and info

10/11/2025

10/11/2025

Why me? How was I going to cope? How long could I go on with this? How would my family view me? How would they perceive me? Had I failed them? How could I keep going?
Thirteen years later, those same questions came back — not as echoes of fear, but as old companions testing my resolve. I wasn’t just learning to live with Parkinson’s anymore; I was learning to live beyond it. These weren’t the questions of a man facing diagnosis for the first time, but of someone who had already fought through the denial, the doubt, the daily grind, and still showed up.
This time, the questions didn’t come in a sterile doctor’s office or during sleepless nights filled with uncertainty. They hit me halfway up another brutal hill climb, legs shaking, heart pounding, and mind daring me to quit. Parkinson’s didn’t have the same power it once did — but it still knew how to whisper, how to push, how to ask, “Are you sure you can still do this?”
And my answer, though breathless, was different now. It wasn’t “Why me?” anymore — it was “Why not me?” Because after thirteen years, I’ve learned that success with Parkinson’s isn’t about avoiding the hill. It’s about climbing it again and again, knowing it may never end — and doing it anyway.