I haven’t written an essay in weeks, and I don’t want to now. I’m just shoving myself forward, as I do with so many things these days, now that Parkinson’s is rationing my dopamine.

I rarely want to exercise. I just go through the motions. Once my legs start moving, momentum keeps me going. I was kinda hoping the same thing would happen here.

Maybe you can relate?

Yesterday my sister and I went to the movies and shared a tub of “buttered” popcorn and two buckets of Pepsi. I mean, I have never held a cup of carbonated corn syrup that deep and vast.

I knew it was bad. All those chemicals and empty calories were probably jet fuel for whatever malevolent forces are eating my brain. But I just didn’t care. I wanted to stare at the screen, crunch something salty, and sip something sweet that made me feel vaguely alive.

I’m so tired of Parkinson’s. Everything is a project now. When I eat. How I walk. Is my left leg dragging? Is my head bobbing around? Am I adequately hydrated so I won’t see spots when I stand up? It’s like a treadmill I can’t get off. Move, move. Smile, smile. Worry, worry. The pills go in, the shakes go quiet, then a few hours later they come back.

My name is Karen and I want to speak to the manager.

Oh wait. That’s me.

I did not plan on writing about anxiety today, but it has settled into my mind, my heart, and possibly my soul like a miasmic fog, and it’s tough to see through it to anything else.

Maybe fog is the wrong metaphor. Or maybe I need several, because my anxiety is many things.

It is a nameless hovering dread. It is psychic static that drowns out the voice of reason. It is a metaphysical, shaking terror that tries to escape through the tremors in my hands.

It comes with a heavy, heavy sadness I have not felt in many years. I could cry for the whole world right now.

I realize that part of this is chemical. Parkinson’s messes with brain chemistry. Part of it is situational — my husband is not well, and I hate seeing him like this. Part of it is a semi-rational reaction to My Life Right Now.

I miss the life I used to have. I miss working full time — the adrenaline rush and the camaraderie of late nights working with smart, funny people. I miss moving through the world with a more sure-footed step. I miss my daughter’s childhood, when I could lift her onto my shoulders and carry her around.

It was all so much simpler then.

Well, probably not. But that’s what I feel right now.

And the feel part is kind of the point.

Even in my miasmic fog, I still understand that this anxiety is a feeling and not the truth about the world.

It’s hard not to believe anxiety and depression because they feel so real. It’s hard not to believe that the world is coming to an end, especially when my hands are shaking like leaves in a storm.

But feelings are not facts.

Right now, I am lying on my bed with my big fluffy dog, a canine life raft I can hold onto while I bury my face in his fur. He may not understand what I’m going through, but he knows how to be here. He knows I love him, and he loves me.

Holding onto Memphis, feeling him breath, I feel grounded. Almost safe. I believe “this too shall pass.”

Sometimes life hurls a whole lot of scary your way. But sometimes, if you’re lucky, you also get a dog.

I did something today I would never have done before I had Parkinson’s: I ran across the George Washington Bridge. I even took a picture of my shadow crossing from the New York side to the New Jersey side.

But the boundary I crossed in my mind was even more clear-cut: the line between being limited by self-centered fear and being freed by not giving a fuck.

Before Parkinson’s, I never would have run across that bridge because I would have been too afraid of how I looked. Slow. Clumsy. Dorky, to borrow a word from my middle-school vocabulary.

Ah, middle school. The cauldron of self-consciousness. It burned so many trigger warnings into my brain that I’ve spent decades contained by those old fears, as if I had a committee of Mean Girls permanently slouching around in my head.

Don’t wear those shorts. Your legs are too jiggly.

Don’t wear that shirt. Your neck is too wrinkly.

Don’t you dare wear bright colors. Stick to dark neutrals so you fade into the background.

Today, I ran across the bridge in running shorts and a bright green tank with sparkles on the front.

Because Parkinson’s did for me what therapy could not: it made me care less about how I look than how I feel.

And right now — sweaty, tired, slightly overheated — I feel free.

My mind is a radio tuned just off the station. Snippets of thought. Scratches of anxious static. A hovering sense of dread.

Stop it, Karen. Get busy.

I need to empty the dishwasher. That’s a small, productive task that will show some mastery over my life. The dishwasher is full. Then it will be empty. I will have Done Something.

Ah, but.

I walk into the kitchen, see a Dunkin plastic cup with a straw poked through the lid and it defeats me.

NO.

I just need to get started. When apathy and anxiety make me get stuck, I have to treat myself like an old standard-shift car that can’t get into gear. Maybe there’s a hill I can roll down just to start? My tee shirt is flung down at the bottom of the bed. I could cross the room and put it in the laundry basket.

Even that feels just out of reach.

I’m not always like this.

The other day I hurled myself into housework. Whirled around the apartment, cleared the clutter, did two loads of laundry, got down on my hands and knees and scrubbed the kitchen floor, even lifted the heavy glass off the coffee table to clean the grimy edges.

Today I feel…stuck.

I should be writing. Wait, I am, kind of. But this doesn’t count.

This is just me lifting the lid on my crazy-ass mind and showing you what it’s really like in here.

Last week I wrote about realizing I have dyskinesia. My doctor prescribed an add-on medication to help with it, and it really has. I’m not bobbing my head as much. My hand tremor is quieter.

But since I started this med, I’m filled with a scribbly-scrabbly anxious apartness, a feeling so strange and internal it makes me wonder if I’m losing my mind.

I keep having all these deep thoughts, but then I wonder: are they really thoughts? Are they emotions? Or are they just the physical manifestation of my brain chemistry?

Is this insight? Anxiety? Medication? Parkinson’s?

Where, exactly, do I end and the chemistry begin?

Forget medication. Even my animals bend my mood.

If my cat springs up on the bed and meows — there’s a little rush of oxytocin.

If my dog rests the dome of his sweet head against my palm — ah, dopamine.

But also, I love them. Does it matter if my feelings are pure or influenced by molecules?

Is this going to be another essay where I reach no conclusion and just snap the laptop shut on a tangle of question marks?

Hey, I’ve got an idea.

Your turn: write below whether you ever feel this way, and what you do about it.

I’m going to empty the dishwasher.

Eventually.

I thought I had accepted my diagnosis that rocky first year.

Turns out, mine was a conditional acceptance: I accepted I had Parkinson’s, as long as it didn’t get too bad.

Theoretically, I could face my fear of the future by being optimistic right now. Live in today, I told myself. Exercise your ass off and you can stop the beast from taking you down.

The tremor? Ok, it came back a few hours after taking my meds, but I could still function just fine. Stiffness and slowness were tough but then again, didn’t everyone feel stiff and slow down as they got older?

Volodymyr Zelensky was my hero. (Still is.) Outgunned, outnumbered, he would not give in. His defiance fueled mine. I wanted to meet Parkinson’s the way he faced Putin’s army: chin up, eyes blazing, never surrender.

Then the tremor went inside. When my meds wore off, a hyperactive anxiety fluttered through my core.

It was then that I truly felt the dis-ease.

Then…

I got Covid, and my symptoms got worse. More tremor. Faster wear-off. Soul-deep exhaustion so profound it felt like every individual cell was shutting down. The ad agency where I worked was still remote several days a week, so when things got bad, I could lie down and still log onto zoom calls with my camera off. But I was having trouble staying focused on the dozen or so projects going on at a time.

Being an Executive Creative Director on a busy global account is a job that requires, as Liam Neeson would say, “a specific set of skills.” One of them being the ability to pivot from one idea to another at the speed of light, thinking on your feet up to 14 hours a day.

The stress kept me from sleeping and the long hours beat up my body and mind. I couldn’t keep up.

Leaving my job was the first Unacceptable Thing. Fortunately, my denial was still strong. I wasn’t retiring, I told myself. I was focusing on writing a memoir (this one, in case you hadn’t guessed.) I served on the boards of two foundations. I made fundraising videos.

Fast-forward to last week. My run-in with being unable to run, and then, the moment of truth I still can’t accept: I shot a video of “A Day in My Shoes.” Reviewing a sequence where I was writing on my laptop, I saw my head bobbing up and down like a hen pecking in a barnyard.

Dyskinesia.

The truth went in sharp and hard.

I also noticed the masked, glazed look I now call “Resting Dead Face.”

This wasn’t Parkinson’s Lite. This was actual Parkinson’s.

Theoretical Parkinson’s is the diagnosis you accept while you are still mostly Okay. You accept the concept. You accept the tremor. You accept the 2-3 pills a day. You accept the idea that life will be different.

Actual Parkinson’s is when you see your own head moving without your permission.

Actual Parkinson’s is when your face looks scary and glazed.

That’s why Parkinson’s is so hard to accept.

It keeps changing the terms and conditions. It keeps asking, “how about now, Buckarina? Still feeling that #FuckParkinsons hashtag?”

I don’t know where to go with this essay. I like to end on a punchy high note, but Parkinson’s has quite literally just punched me in the face.

For now, I think I’ll just say, I’m a work in progress.

And so is my acceptance.

.

I’m standing on a treadmill in the fitness center of the Phoenix Sheraton. I’m here for the World Parkinson’s Congress, and the room is rocking. Every cardio machine, taken. Well, good for us! Look at all us fit people pushing for our personal bests!

Except for me. Suddenly, I can’t run.

Every nine or ten strides, my foot drops and kicks the treadmill, lurching me off balance so I have to grab the handrails to avoid getting thrown off the back.

Just last month I ran a 5K in Central Park. Now I can’t even run in place. My left side, my affected side as we say in the business, is on a different wi-fi network from my right. The timing of my stride, the amplitude of my step—it’s just not working.

It’s been a stressful few weeks. My husband was hospitalized for sepsis and came home weakened in a way I hadn’t seen before. I am not a natural caregiver. I’m a natural worrier, and that’s not helpful. At all.

I understand that stress affects symptoms, but this seems outsize. Terminal. The universe collecting on a debt I ran up with my perky positivity and ambition to push through and prove myself.

Along with my fear comes a deep, aching grief. For the past six years, running hasn’t just fueled my energy but my confidence. I’ve never been fast, and Parkinson’s certainly hasn’t made me faster. But it did push me forward. It pushed me to run a block, two blocks, just to that tree in the distance. A quarter mile, a mile, all the way around the reservoir in Central Park.

I liked to say, “I’m a back-of-the-pack runner, but I’m in the pack.”

Not anymore, apparently.

In the 35 minutes it takes me to struggle through two miles on this treadmill, lurching and grabbing the handrails and blinking back tears, I confront Parkinson’s on a whole different level. Not just as a support group leader or the wry observer I’ve tried to be, but as the thing I shunned most: a patient.

One year after diagnosis, I gave my group a little pep talk where I said “defiance is the antidote to despair.” I started an Instagram feed, FU_PD. “Callow,” is that what you call that? “Asshole?” Maybe. Or maybe just a terrified newly diagnosed person trying not to give up.

I would not succumb to hopelessness, I vowed. I would not give in to grief.

God sure is quirky.

I’m here at the World Parkinson’s Congress to speak at the Support Group Leader’s Lounge. Today’s talk is on grief, and somehow, one of the examples I’ve written into my presentation is a runner who can no longer run.

A woman in the audience raises her hand.

She says, “I could have written this example.”

She talks about what running gave her, and what it meant to lose it: the confidence and freedom of moving forward in a body she could trust.

I tell her I feel the same way. Other people in the room nod. There are so many things Parkinson’s takes from us. So many reasons to grieve, even when our disease is “not so bad.” Driving at night. Getting up from a restaurant table without worrying I’ll send the dishes crashing to the floor. My career.

Afterward, friends hug me. The clenched feeling in my chest begins to loosen—not because anything has been fixed, but because it has been witnessed.

When I get back to New York, I try running again. Slowly. Oh-so-fucking-slowly. My legs are stiff. But they’re both functioning, more or less as a team.

I don’t fall.

I run.

Not in a triumphant Rocky-training-montage way. But my way.

Pounding along, feeling both the weight of gravity in my aching legs and the coolness of the breeze off the Hudson.

Parkinson’s is a disease of loss. No amount of pep-talking changes that.

But sometimes, just when you think the disease has taken more than you can bear, hope touches your face and lifts your hair off your brow.

And sometimes, that is enough.

Hello, pitiful humans. Lucky for you, I’m writing this column for Karen while she practices “Self Care” — resting, exercising, whatever. It’s adorable that she now prefers these activities to hard drinking.

She calls me an “annoying lizard,” which is rich, considering her most annoying traits are the ones helping her fight Parkinson’s.

STUBBORNNESS — She’s always been this way. Tell her to lie down and give up, and she’ll drag her shaky ass outside just to spite me. Have you seen her run? Like a glacier in leggings. And yet, she persists.

GRANDIOSITY — She really thinks she can beat this thing? Ha! When she strikes her chest like Celine Dion and says, “not THIS buckarina,” I laugh my tail off. But it gets her moving, so…points for obnoxiousness.

OVERSHARING — She has this saying, “You’re only as sick as your secrets.” Exactly! Every time she says something honest about Parkinson’s, some other human feels less alone. Gah. Then they laugh at me. I hate when that happens.

CONTROL ISSUES — Parkinson’s loves taking control. Unfortunately for Parkinson’s, Karen has been a control freak her whole life. She cannot control the disease. But she can control whether she shows up, whether she moves, blah blah blah. Don’t get me started.

PROCRASTINATION — There are moments she teeters on the brink of despair, but then, just when I think she’s going to give up, she delays the full nervous breakdown until after boxing — then forgets to circle back.

Your most annoying traits have POWER. Weaponize them. Take the parts of yourself that make you cringe and hurl them at the misfolded proteins in your brain.

Be stubborn, grandiose, controlling, sneaky, willful, loud — how I hate loud voices — and take up all the space and all the air in the room.

Parkinson’s is annoying.

Be more annoying.

Or, as my muse so eloquently puts it:

BE BEST.

Kevin, my Parkinson’s familiar and the world’s least helpful therapist.

I’m tired of Parkinson’s.

Tired of feeling my left arm jingle jangle with tremors and that particular feeling of physical incompetence between weakness and anarchy. Now, just to keep things interesting, my right hand sometimes joins in the shaking fun. I’m about six years from diagnosis so I guess I should be grateful it’s taken this long to progress.

But I’m tired of forcing a cheerful attitude.

Tired of being “brave” (it’s not bravery if you don’t have a fucking choice).

KEVIN: Well, I’m glad someone said it.

ME: Isn’t that the only power I have now? Putting this shit experience into words?

KEVIN: Look what I’ve given you: something important to say. Isn’t that what all you writers are looking for?

ME: Fuck all the way off.

A few of my friends from my support group suggest I join another, where I’m not the moderator, one where I can fall apart without worrying I’ll scare the newcomers.

This makes sense. But I haven’t done it yet. And I don’t know why.

Maybe I’m tired of doing “the next right thing.”

Oh God, I’m crying now.

KEVIN: Well, you’re human. (slow blink) Sucks to be you.

Editor’s note: I’m safe. I’m not in danger. I’m just telling the truth about a hard moment, because hard moments are part of living with Parkinson’s. And Kevin is an asshole.

Does this ever happen to you?

Last night, I woke from a deep sleep to an unbearable, piercing pain in my right leg. A dystonic spasm. I felt like a bear with its leg caught in a trap. I had to wake my husband and ask him to bend my knee until the spasm loosened its grip.

While I’m asking...

Ever choke on your own saliva and cough and cough and cough while your friends ask, “Are you okay?” and all you can do is nod because you can’t talk, but you’re sort of drowning, even though you’re pretty sure you won’t die?

Ever feel your right hand cramp into a claw shape while you’re driving, then, just as suddenly, relax back to normal?

Ever go five days without pooping?

Ever fall into a hole of apathy and exhaustion so deep you want to drop to the floor in the produce aisle?

No? Just me?

Parkinson’s, for me, is a disease of loneliness. Locked in an unpredictable body, new symptoms appear and disappear without warning.

Sometimes all I need is to know I’m not the only one.

This morning I texted my friend Margie—athletic, capable Margie—to ask her about the leg spasm thing. She said, “It used to happen, but no more, thankfully.”

That’s all I needed. To know I wasn’t alone.

KEVIN: Stop oversharing. People will think you’re weird.
ME: Oops! Too late.

It’s great to see Parkinson’s represented on a popular show like Shrinking. But as much as I love the show, and adore Harrison Ford, I have to say this: in the span of one year — basically Alice’s senior year of high school — Paul’s Parkinson’s seems to progress from tremor in one hand, to tremor in both hands, to not driving, to using a cane, to being nudged toward moving across the country to live near his grown daughter and her family.

For many of us, Parkinson’s does not unfold like that.

And that matters. Because when an actor as beloved and credible as Harrison Ford portrays Parkinson’s, it becomes an opportunity to educate people — or to reinforce what they already fear.

As someone who leads a support group for women with Parkinson’s, I can tell you that one of the most alarming things I hear, over and over, is fear of the future.

When I was newly diagnosed, I met a woman named Lynn Hagerbrant, co-founder of Parkinson’s Body & Mind. The first thing she said to me was: “It’s not as scary as you think it is.” Now THAT was helpful. It got me off the couch and into the sunshine, where I could live my life instead of waiting for it to end at any minute.

That doesn’t mean Parkinson’s is easy. It is not.

Yes, Parkinson’s sucks. It really, really sucks. But not always in the dramatic way people imagine. More often, it’s the daily erosion of mood, energy, clarity, confidence, and ease. It’s the invisible fight. It’s lifting weights, running or riding that stationary bike, forcing yourself to work out when all you want to do is lie down.

It’s the wracking pain of constipation due to slow motility and the well-meaning but unhelpful advice to “just eat more fiber.”

It’s trying, every day, not to hand the disease more of your life than it has already taken.

That’s why I keep coming back to the idea of Parkinson’s Understanding Month, not just Awareness Month. People know the name. What they often don’t understand is the lived reality: not a neat, rapid slide into disability, but a long, uneven battle against fear, fatigue, pain, and uncertainty.

And so I applaud people like Lynn, Jimmy Choi, Allie Signorelli, Esther (aka “Shaking in My Boots”), and others who share this lived reality. And of course Michael J. Fox himself, for reminding us, in every scene he steals, that charisma is incurable, too.

Fear thrives in misunderstanding. Understanding begins with people’s real stories.

What’s your real story? Tell us what you’ve learned that you wish people understood about Parkinson’s.

I don’t like when people help me. Watching me struggle with a parka zipper could give you a nervous breakdown—watching me line it up and drop it, line it up and drop it, over and over—but don’t you dare reach a friendly hand to help. I’ll jerk away and sweep off in a rustle of taffeta. Help offends and embarrasses me. It makes me feel old and decrepit.

But yesterday, something shifted.

I was signing in to run my favorite 5K race, “BARK IN THE PARK.” It’s a benefit for Cornell’s Canine Health Center, held in Central Park. The sun was shining, daffodils were nodding in the breeze, and dogs were frolicking in the jaunty red bandanas they handed out along with the tee shirts for us humans.

When they gave me my race number, I tried to pick up a few safety pins--but found my stiff Parkinson’s fingers fighting just to pick up two from the tangle in the little bin.

I tried to open one but it bent. I tried another, fumbled, and dropped it.

Suddenly, I just couldn’t spend one more second in this safety pin purgatory.

So I went back to the nice lady at the booth and said, “I have Parkinson’s and my hands are being ridiculous. Can you pin this to my shirt for me?” She didn’t miss a beat.

She said, “sure, no problem,” and came out from behind the table like it was something she did all the time. She pinned the bib on my shirt, I thanked her, and that was that. It didn’t make me older. It didn’t make the misfolded proteins in my brain multiply.

It just got the bib on my shirt.

Before the race started, I re-tied my sneakers with tight double knots because, Parkinson’s, and tripping on a shoelace could end me. And I am nothing if not tightly knotted.

When the race started, I ran out onto the course with the other people and dogs on leashes. I had a persistent stabbing pain in my abdomen, which I chalk up to the constant constipation of Parkinson’s, but we’ll talk about that some other time, when you haven’t just eaten.

Besides, pain was the least of my problems.

Because Parkinson’s messes with my gait, I have to be super-conscious about keeping my left foot from kicking my right foot when I run, about swinging my arms and reaching to extend my stride.

This time, as I ran, I also thought of something our boxing coach at Moving Brains says.

John Duddy is a former middleweight champion, and when we practice our boxing combinations, he says, “Always moving, always breathing.” Over and over, like a mantra. When he walks by me while I’m punching the bag, he says, “Breathe, Karen, breathe,” and I say, “Well of course I’m breathing. I’m not dead. Am I?”

But there’s a difference between gasping for oxygen and calmly inhaling and exhaling so your body can move as it was meant to. I have a tendency to hold my breath and tense up my shoulders and make gravity feel twice as heavy. But lately, as this disease shows no signs of releasing me from its grip, I find I have to be more teachable and loosen the f**k up.

So as I ran, I kept thinking, always moving, always breathing. And it helped. It let me catch my breath and loosen up so my arms could swing and my legs could move more freely, and somehow, I had my fastest split ever—which, don’t laugh if you’re a real runner, but here it is, straight from my Garmin watch:

Somewhere in the third mile, I felt something hit my ankle and realized that despite my double-knotting, my left shoelace had come untied. Gah! Well. Okay. Adapt.

I kept running while swiftly stealing looks over my left shoulder so I wouldn’t step into another runner’s path, which is also a balance challenge if you have the big “P.”

I made my way over to the edge and discovered that after running this far, my legs were stiff as concrete. Adapt, adapt. I found a light pole, hoisted my foot up, and tied the lace as fast as I could with my ridiculous hands. Then I found my way back into the stream of runners and ran to the finish line, moving and breathing, still in one piece.

Bark in the Park 5K, 2026. ✅

I accepted help. I remembered what my coach said.

I came untied, but still held it together. I call that a win.

.

HERE’S WHAT YOU DO:

1. Unstick your movement
Walk with exaggerated steps.
Swing your arms—hard.
That usually unlocks my legs.

2. Go outside
(My dog, Memphis, is a big advocate of this.)
Sunlight helps. Movement helps.
Extra credit if you really don’t want to go.

3. Notice three beautiful things
Things that have nothing to do with Parkinson’s:
Unseen birds twittering in the trees.
A kid on a tricycle.
A flower doing its thing.

4. Play a kick-ass song
Better yet—dance to it.
I Won’t Back Down by Tom Petty.
Golden from K-Pop Demon Hunters.
Drown out the negativity.

5. Call someone who’s happy to hear from you
Thinking of someone else
lightens the load on yourself.

🎁 Reward (because you earned it)

After you’ve done all that—here are
52 blissful seconds of Logan Roy saying “F*** off.”

Don’t be alarmed if there’s a click-thru asking if you’re over 18. You are.

You know how witches have black cats? I have a familiar too. His name is Kevin, and he’s my Parkinson’s familiar.

Karen: Kevin, when did you move in?

Kevin: You didn’t notice? Ha. Very on brand for you.

Karen: Hey! Maybe I wasn’t always 1000% in touch with my body, but there are times in life when you have to buckle down and work through exhaustion or discomfort or pain…

Kevin: Can you hear yourself?

Karen: Oh, I get it. You came into my life to get me in touch with my body.

Kevin: If it weren’t for me, you’d still be working 70 hours a week making ads for eyeliner and lipstick.

Karen: Oh, so that’s what you are? A lifestyle intervention.

Kevin: You lived for years with crippling constipation. Nerve-wracking anxiety. Insomnia. Acting out your dreams to the point where you jumped out of bed. It was only when I started tugging at your sleeve so hard it made your hand shake that I got your attention.

Karen: But that was you the whole time!

Kevin: And you accepted it. You never fought for your health and happiness. Ever! Look at you now! Seeing as how we share a body now, I think you might at least consider the good things I’ve done. How far did you used to run? On an average day.

Karen: I don’t know. I didn’t keep track.

Kevin: Exactly.

Karen: Okay, okay. I see what you’re doing here.

Kevin: Did you ever run a 5K race?

Karen: I hate you.

Kevin: Did you ever try boxing? I know you WANTED to. But did you ever put yourself out there and try the things that made you uncomfortable?

Karen: I would’ve gotten there eventually.

(Kevin blinks slowly.)

Kevin: Do you have more friends now? Or before?

Karen: Did I mention I hate you?

Kevin: You would never reach out to people. Or let yourself be vulnerable.

Karen: You don’t get to take credit for what I’ve done. Not the running. Not the workouts. Not the friendships I’ve forged. That’s what I’ve done in spite of you.

Kevin: Still…because of me.

Karen: No, because I’m still ME. Fck you. Fck Parkinson’s.

Kevin: I’m hungry.

Karen: Find your own bugs.

I place my right foot on the box. I try to push up and bring the left leg to join it.

Nothing.

I strain. I struggle. The most I can manage is a tiny, ineffectual twitch.

Athletic Director John Duddy, a former pro boxer, stands in front of the box. He holds his hands out just under mine. He’s there — but not to be leaned on.

“Stand up,” he says in a voice you don’t argue with.

I stand.

There I am, on top of the box.

What just happened?

Parkinson’s lies to us. It convinces us the problem is weak muscles. Often, it’s a weak signal between the body and the brain.

As neurologist Jose Cabassa, MD, medical director and founder of the Moving Brains Foundation, explains:

“Parkinson’s damages the brain circuits that normally run movement automatically, so the signal to move can come through weak, late, or garbled. But give the brain a strong external cue — a forceful command, a visual target, or a pair of hands to reach toward — and suddenly the system works a whole lot better.”

“YOUR FEET ARE GLUED TO THE FLOOR”

Many of us experience freezing of gait, when we feel like our feet are stuck to the floor. The problem is, again, faulty signaling (think about your laptop freezing when the Wi-Fi is weak).

Here’s advice from my friend Margie, a table tennis champion and all-around great athlete: “I watch other people walking near me, and cue myself to match their gait.”

If she knows she’ll be standing still for a while, she plans ahead:

“If I’m in an elevator, I lean against the back wall like I’m just chilling. Then when the doors open, I transfer my weight forward and that gets me moving.”

Brilliant.

“YOU’RE SLOW”

Left to my own devices, I’m a verrrrrry sllllllowwww runner.

Lori Quinn, PT, EdD, FAPTA, Professor of Movement Science and Kinesiology, explains that this is not due to weakness but motor control problems like bradykinesia (slowness of movement) and hypokinesia (low amplitude movement). Rigidity, or muscle stiffness, can also be a factor.

You’ve probably felt it: your legs feel like they have the brakes on, even when you’re trying to run fast.

“Slowness of movement in Parkinson’s disease can have many causes, but it isn’t impossible to overcome,” Dr. Quinn says. “People with PD can move faster if they bypass the ‘thinking’ part of movement. Using external cues—like music, counting, or visual targets—can help unlock quicker movement.”

The hack: an exaggerated arm swing can unlock your entire gait. Try rotational moves like cross-body punches and trunk twists (elbow to opposite knee). And warm up! It takes me about a mile to loosen up and move faster.

During warm-up, I think about exaggerating my movements, like I’m being filmed in dramatic slow motion.

External cueing helps — 160 BPM music, for instance. When I’m running in a 5K and people pass me, guess what? I speed up.

“YOU’RE OUT OF SHAPE”

Dr. Cabassa is convinced that orthostatic hypotension (low blood pressure on standing) can contribute to feelings of weakness in people with Parkinson’s. It can also deprive the brain of adequate oxygen, contributing to cognitive decline. Yet in the six years since my diagnosis, he is literally the first neurologist I’ve met who makes it a point to monitor and treat drops in blood pressure.

“Most of the time when we detect orthostatic hypotension, the person either does not have immediate symptoms to alert them, or has symptoms they don’t associate with the condition—like fatigue, brain fog, coat-hanger headache, chest pain or difficulty breathing,” Dr. Cabassa says. “This can leave the person frustrated, thinking they are too out of shape to exercise, or push themselves harder.”

PARKINSON’S IS VERY PERSUASIVE.

It tells us we’re weak. Slow. Incurably clumsy.

But sometimes — as I’m learning, one high box at a time — the problem isn’t my muscles. It’s the signal between my body and my brain.

And signals can be hacked.

I would love to hear your workarounds!

What tricks help you get moving when your body says “no?”
What cues unlock your stride, your balance, your strength?

Hit reply and tell me — let’s outsmart this thing together.

Subscribe for more updates and advice on outsmarting the Parkinson’s brain.

A dozen little Lady Gagas careen around my living room. Seventh birthday success! Despite my crazy work schedule, this mother monster had baked the cupcakes, fitted the wigs, drawn zigzags on their little faces.

Two hours later they left in a giggling stampede of shedding wig hairs, leaving me comatose on the sofa surrounded by cupcake wrappers and static-clingy strands that would tangle my vacuum forever.

“Mommy, can I open a present?” Sophia asked.

I barely raise my head. “We have to write it down.”

“Please, mommy?”

That’s the last thing I heard before I went under.

I woke up to crumples of discarded wrapping paper and an un-accounted-for pile of toys.

My husband, who had wisely decided to work that day, thought I was being too hard on myself. “You’re only human.”

“That’s no excuse,” I thought.

That’s what I always thought.

Too much work? Work harder.

Too little sleep? That’s why God made Starbucks Ventis.

I give myself more grace now. If there’s one thing to not hate about Parkinson’s, it forces you to accept limits. But was I less demanding now, or do I simply cave to my dwindling energy supply?

I wondered if it was just me, or did other people with Parkinson’s feel this way?

So I created a short, anonymous survey for the women in my Parkinson’s support group, asking how pressure and expectations had changed for them from before diagnosis to now.

This was the biggest shift the survey revealed.

The pressure we put on ourselves to perform decreased steadily from before diagnosis to diagnosis, to now.

Beth M: “If I can complete one activity in a day, well, that’s just fine. Two things? Amazing. Not my usual dozen.”

Maybe good enough is…good enough.

Kathleen: “My mom gave me advice a long time ago, and it finally hit home. She said, ‘Leave it alone.’

Fran: If you’re lucky enough to have a partner, let them support you. Be kind to yourself.

Reading their answers, I realized something I never would have chosen to learn.
All my life, I’ve fought against being human—against limits, fatigue, fear, need.

It took Parkinson’s to teach me this:
accepting I’m only human is what finally makes me fully human.

I’m grateful to the women in my support group who shared their experiences so honestly.

I was SURE the tickets were for Friday night.

That’s what I wrote in my appointment book.

That’s what I told my family.

So imagine my surprise on Friday morning when I checked the ticket site and found no tickets—no record of having bought them at all.

Meanwhile, I was sitting on a plastic chair at my local Social Security office, waiting for my number to flash on the screen. I was hoping to untangle a mess of red tape that threatened to cost my family thousands of dollars a year.

My mental state was not optimal, as I approach every encounter with Social Security with the frenzied, fluttering desperation of a moth flinging itself at a porch light.

I swiped over to my Apple Card transactions and found this:

Outrage flamed.

Why hadn’t the ticket seller TOLD me my card was declined?

I considered waiting until I was done at Social Security so I could deal with the tickets on my laptop, instead of thumbing numbers into my fiddly little iPhone.

But I was too stressed to let it go.

I searched my email for any communication from the ticket seller.

Nothing.

Discount tickets for the Friday show were now sold out.

But there were still some available for Saturday.

I didn’t stop to consider whether I really wanted to go.
I didn’t ask my family if they still wanted to go.

I forged blindly forward, my mental vision now reduced to tunnel vision.

I entered my credit card information with my shaky-ass hands, double-checking every number.

The order confirmation pinged into my inbox.

Ah.
Whoa.
Wait!

It was from a different email address than the one I’d been searching.

A quick search of the correct sender revealed the original confirmation—

for THURSDAY NIGHT.

WHAAAAAAAAA???!!!

I went back to my Apple Card transactions, this time actually reading instead of glancing and bursting into flames.

The declined transaction was from November. The $157 ticket charge had gone through just fine.

Which meant I had thrown that money away.

Our seats sat empty while my family ate takeout Chinese food and watched reruns of The Office.

So. Here it was.

Proof I was losing my mind.

Fear of dementia is the number-one fear women talk about in our Parkinson’s support group. According to the Parkinson’s Foundation, cognitive changes are common—but progression to dementia is not inevitable.

Fear, meanwhile, is a disease all its own. I could feel stress hormones whooshing through me, knocking down rational thoughts like bowling pins.

I felt completely incompetent.

Then—of course—my number flashed.

I gathered my papers and walked slowly to Cubicle 18. The man there was tall and soft-spoken. I tried to explain the confusing situation with my tax form and stopped, my throat suddenly choked with tears.

“I’m sorry,” I said.

“Take your time,” the man replied. “It’s okay.”

He explained what I needed to do and invited me to sit in the empty cubicle next to his, fill out the paperwork, and return when I was done. Grace. In the social security office.

Then my daughter called.

She had just finished the final exam for a math class she’d taken over winter break. It was open book, and she had prepared carefully.

But when the test began, she realized she’d brought the wrong notebook into the room.

She couldn’t leave without being disqualified.

She was distraught.

But she didn’t assume this was the beginning of the end.

She didn’t conclude that her mind was sliding fast down a muddy slope and that it was only a matter of weeks until she needed to go into a home.

Stress can mess with cognitive function—unless you’re Sully Sullenberger.

For the rest of us, stress triggers a rush of cortisol and adrenaline that affects how our brains process information. It also creates a kind of mental tunnel vision, where we don’t take in everything we see.

Hence my total misinterpretation of the Apple Card transaction.

My biggest mistake wasn’t buying tickets for the wrong night.

It was assuming that mistake meant I was losing my mind.

Next time I find myself spiraling, I’ll try some box breathing.

And I’ll try to remember this:

Fear of losing my mind will not help me find it.

If this made you think of someone who panics after small mistakes, feel free to share it.

Back in 2020, this was my reasoning:

Taking medicine means I’m officially sick. I don’t want to be sick.

There are a lot of diseases you can control with diet and exercise. Tom Hanks had diabetes but lost so much weight he didn’t have to take insulin. There’s that. Tom Hanks also has two Oscars and is internationally beloved. So okay, maybe it’s not the smartest strategy to compare myself to Tom Hanks.

My Parkinson’s symptoms weren’t “so bad.” I’m putting that statement in quotes so you can see how very true it was.

My main symptoms were stiffness, slowness, a dragging foot, misbehaving left arm, and a tremor that kept getting steadily worse. I was the human equivalent of my family’s 2001 Subaru, still running for 24 years, “check engine” light a-blazing, until the engine blew at 200,000 miles.

I began to think, if exercise is the only treatment proven to slow or even stop disease progression, maybe I need a tune-up.

So, reluctantly, I accepted the prescription. Almost immediately I became, for all practical purposes, ASYMPTOMATIC.

My gait improved. I could now run without kicking my own foot. My left arm swang, baby, swang.

My quality of life improved. I guess I hadn’t realized how bad it had gotten. I was moving more fluidly. Felt more like me.

One of the things that scared me about medication was my fear of growing dependent on it. Of needing more and more until it backfired.

Well, five years later, I do need more. But not a lot more. And as my doctors have explained, it’s not that the meds are losing effectiveness, or that I’m building tolerance. It’s because my disease is progressing, albeit slowly. I’ve gone from three pills a day to four. So the exercise is effective. I’m just, dammit, human.

3-4 hours after a dose, my brain/body Wi-Fi starts flickering and I drop into what I now understand is an “OFF” state, which can vary between feeling like a low-grade anxiety attack to internal tremors that thrum through me like I’m holding a live electric wire.

I get clumsy. Can’t trust my legs or hands.

Or I’ll crumple into an exhausted heap, completely drained. Feeling like a juice box someone stuck a straw inside to suck out my life force. Crumpled, empty, discarded.

But then the next dose kicks in and I slowly fill in my husk of a self until, voila, I’m me again.

I understand not wanting to take meds.

I understand the defiance and the desire to go it alone.

But for this buckarina, my life is better with ‘em than without ‘em. At least for now.

What are your thoughts? Any luck going without? I’d love to hear from you. Drop a reply below.

The morning of my neurologist’s appointment, her office calls to say they can’t do the brain scan they’ve scheduled because the lab is out of radioactive dye. I ask if I should come back another day. No need, the young man on the phone reassures me; the doctor doesn’t think it will be necessary.

There, I think, sipping coffee in bed. They don’t need some fancy test. The first neurologist I consulted told me the tremor in my hand was a side effect of the anti-depressants I was taking. It was November 2020; he’d examined me over Zoom. But he assured me the tremor did not look like anything serious. My hand is steady today. My legs don’t even feel that stiff. I happily slip on my new boots, a nice change after weeks of sweat socks and sneakers.

My husband drives me to my appointment in our old Subaru but with Covid rules, is not allowed to come to the office with me. He squeezes my hand before I heave myself out of the car—when did it get so low?

The doctor’s waiting room is a smear of bright lights, daytime TV and infirmity. My eyes catch on an old woman slumped in a wheelchair, face expressionless, lips slack and drooling. A man with a cane struggles to put one unsteady foot in front of the other. The receptionist greets me, breaking the trance. She is a beautiful Latina woman in a pink sweater.

“I love your boots.” Her eyes smile above her mask.

“Right? Zappos! Pretty comfortable, too.” I do a little dance for her: strut, kick, shimmy, kick. She nods approval and I am happy. I don’t notice my left arm is hanging uselessly at my side, like a scarf.

The neurologist is brisk and brunette. She sits across from me and grabs my hands. “No, relax,” she says. I pretend to know what that means.

She flaps my hands like a rag doll. She rolls each hand in a circle. She has me touch her finger, then my nose, then her finger again. Really, this is more like a field sobriety test than a medical exam. She has me make pincers of my fingers like lobster claws and open and close them as fast as I can. Of course, I can do that. Wow, some people must be really messed up!

“Good,” she says, nodding. See? I’m good.

She has me walk down the hall away from her, then back. I stride purposefully, now feeling completely foolish, like I have blown up a few aches and pains completely out of proportion. My mother was right. I’ve worked myself up. The doctor takes my shoulders and gives a little pull. A quick stutter step but I regain my balance quite capably.

Then we sit back down in her office. People are walking past in the hallway, discussing lunch. She closes the door halfway – Covid, air circulation, all that.

“You have Parkinson’s Disease,” she says.

I feel…nothing. Like the time I sliced my finger cutting onions and for a moment thought, well look at that, it doesn’t even hurt, and then the blood came pouring out. “Yeah, huh?” I say, still stuck in my smiling doctor-office persona. “But the scan…don’t I need that?”

She shakes her head. “Your left arm doesn’t swing when you walk. There is a distinct imbalance between the speed of your left hand and right hand. And considerable rigidity in your limbs.”

“But—but—” With the suddenness and force of a wave crashing in, visual memory hits me: I’m walking through Riverside Park, contemplating the rat-to-squirrel ratio, holding my left arm at the elbow, keeping it still against my side. It just felt more comfortable that way. How long had this been going on? How had I been so completely unaware of it?

“Your symptoms are still very mild,” the doctor says. “In your case, the disease will likely progress slowly. We’re talking years, not months.”

Not decades, though. Only years?

“Medication can relieve some of the symptoms. The disease doesn’t have to—” she stops for a moment and I fill in “define me?” because years of running client meetings have hard-wired me to complete other people’s sentences. She looks relieved.

“Yes,” she says. “It does not have to define you.”

Another wave hits. Parkinson’s. Drooling, disability, dementia. Years not months. I burst into tears.

“Oh, I’m sorry,” she says. “I know it’s a lot.” She pushes the Kleenex box toward me and pulls out the first few sheets, I assume in case I’m nervous about someone having touched them with Covid hands. Regret seeps through me. The stupid things I used to worry about.

She scribbles on a prescription pad and tears off the page. I stare at it blankly. Later, my pharmacist will call and tell me it is not advisable to take this with my anti-depressant. I leave her office, get into the elevator and walk out into the cold with the paper still in my hand, thinking, tomorrow is Thanksgiving.

Outside, I look down and see my new boots walking on the pavement, heel-toe, heel-toe like I’m still walking on the real earth in my real life and have not just stepped off the edge. I open the car door and fall in, seeing my husband’s face, in this last minute before he has to know, too. I watch his face crumple in terrible slow motion, like crash-test footage of a car hitting a wall. He pulls me close. Some of my hair gets trapped and yanked out in the crook of his elbow. I welcome the pain. It is real, it is happening, and it is not Parkinson’s. His shoulders heave, wracked with the sobs of a man who never cries. “Why you?” he keeps asking. “Why not me instead of you?”

I don’t have an answer. I don’t even have the same question. Why not me? Drugs and booze and self-destruction, natural killer cells destroying our babies, my uncontrollable tears and bottomless sadness, isn’t this paralyzing slow death the way you’d think my story would end?

When I get home, I kick my boots in the corner, where they stay for 2 weeks. I pull off my jeans, drop into bed, shake two Klonopin out of the bottle and swallow them right away, before I can change my mind. My big sweet dog clambers onto the bed to settle himself over my legs, which don’t need to be pinned down; I’m not going anywhere. But it’s nice to feel his weight on me.

I hear my daughter talking to my husband. “Is Mommy ok?”

I hear him tell her, “Mommy will be okay. She needs to rest right now.”

“What’s she doing? Can I talk to her?”

I call out, “I’m okay, baby. Finish your schoolwork.”

She edges sideways into the bedroom. “What’s wrong, Mama?” I hear the silence from my husband and know without seeing him that he is paused in the hallway listening.

“I’m okay.” I hold her soft, warm hand. God, it’s still so small. “It’s something with my nerves. It’s a nervous problem.” I don’t know how to lie about this. I know I’ll have to tell her but not right now.

“You’re nervous? Is it from your job?”

“No baby. I mean, yes, probably! But I’ll be fine.”

She puts her hands on the door frame and swings in and out like she did when she was small. “Do you want to watch Monsters Inc?”

“Maybe later.” Grief, gray and spongy, surrounds my entire being. Thank God for the chemical calm drifting in. I’m here but not here, pressed behind the pane of glass that separates me from the world. I can see Sophia, I can see the clutter in my bedroom and the drift of doghair at the edge of the room (I’ll have to vacuum later, comes the automatic response of my mind, before realizing I don’t think I can do that, how can I do anything simple and normal ever again?). I put my head on the pillow and close my eyes. Larry comes by and asks Soph if she wants grilled cheese for lunch and she follows him into the kitchen.

I pick up my phone and Google “Parkinson’s Disease.” I learn it is a progressive neurodegenerative disorder that affects movement, balance, and other bodily functions. Correction: I don’t learn this, I read this, then compulsively scroll for more bad news that pinballs around my brain, pinging hard with every hit. I learn that the most common cause of death is aspiration pneumonia, because swallow function is affected, and I think back to all the times I choked on water and imagine myself in a hospital bed, hooked up to tubes.

The information varies wildly, but I only believe the scariest. One site tells me people with Parkinson’s have a nearly normal life span. But another tells me my prognosis is a 5-10-year life expectancy after diagnosis, so I begin a round of mental math, figuring out how old Sophia will be when I abandon her forever. For someone with crap math skills, I sure do a lot of calculating.

When I finally tell Sophia a few days later, she is sitting on our bed. Larry and I are each holding one of her hands. She falls over laughing against our legs. I know she’s not really laughing because her eyes are sad, but the laugh sounds peal out of her until she is shaking and helpless. “It’s okay,” I say. “It’s really okay.”

Later, I look up this phenomenon on Dr. Google and learn this is a common reaction to being emotionally overwhelmed. This makes sense. I remember being in high school and our Driver’s Ed teacher showing us a scare ‘em straight film called “The Last Prom,” in which careless, drunk high schoolers careen into gruesome car wrecks. Throughout the film, I laughed so hysterically I had to put my head on the desk and pretend I was crying.

Later, Sophia comes back into my bed, which I have not left for days, and crawls onto my lap. “Are you going to die, mama?” she asks.

“No!” I shake her. This is the first time I’ve felt like myself since I walked into that doctor’s office. “I mean I will, someday, but a long time from now when I’m really really old.”

“I don’t want you to die,” she says.

“Good. That makes two of us,” I say. And then we watch Monsters Inc

.

It was a going-away party for a boss I loved, with colleagues I haven’t seen since I left my job to go on disability.

For a buzzy, glowing hour, I got to be the Kmac I used to be—the high-energy, high-performing creative director who could juggle a dozen assignments and still crack a joke, surrounded by witty, hardworking people I adored.

I had chosen my shoes with care: my favorite black boots to wear with my kick-flare jeans. Cute but walkable, with a flexible sole and a snug fit that keeps my foot firmly in place. My feet don’t flex normally anymore, so shoes that are too loose or too rigid shimmy on my feet and make me stumble. The last company party I went to, I wore sexy heels that I stepped right out of while walking up a flight of stairs.

I’ve learned my lesson.

I had hit a wall of fatigue that afternoon while running errands. By 2pm I found myself slumped in a subway seat, reduced to rubble, realizing I couldn’t power through the day the way I used to.

So I dropped the rest of my plans, went home and took a power nap to shore up my energy.

I timed my meds just right so I could stride into the party with steady hands and a bright smile instead of the glazed, dead look my face gets when my dopamine runs low.

Hugs. The clasp of a hand “it’s been too long!” A blur of catching up: new babies, new homes, new marriages. My colleagues were moving forward in life and I was there for it.

People said “you look great!” and I admit, I basked in it. Someone mentioned the 5K I posted about on Facebook. I basked in that, too. I want people to see me as the still competent, still striving woman who fundraises for Parkinson’s foundations, who runs a support group, who runs across the George Washington Bridge.

But with Parkinson’s, “looking great” has a short lifespan.

In another hour or so, I knew my meds would wear off and my hand would shake. Gravity would grow 10 times stronger. Every step would be a slog through molasses. My facial muscles would stiffen and my smile would look fake.

I didn’t want my work friends to see me that way.

So I left early.

I missed the chance to chat with my boss. I missed the chance to catch up with a lot of the people I had so looked forward to seeing.

I power-walked to the subway, made it down the stairs and onto the A train before the first tremors thrummed through me.

And that’s when the worst Parkinson’s symptom hit: the loneliness of leaving so much of my life behind.

Not because of the disease in my brain but because of my own need to be seen as Okay.

I didn’t want people to see me as I am. A person who sometimes needs a steady hand to get up from a chair or move through a crowded room.

There were people at that party who would have offered that steady hand for me, if only I had the willingness—all right, courage—to show up as my whole self. Shaky hands, shuffling gait, stiff face, whatever.

It took years for me to come out about having Parkinson’s. The first few years after my diagnosis, I hid my shaking hand just out of zoom frames. I timed my visits to the office just right so no one saw me at my most vulnerable.

In my neurologist’s waiting room, I’d practice finger taps so I could look like the disease hadn’t progressed.

All for the fleeting ego-trip of being told “you look great.”

One of my biggest inspirations is @jcfoxninja, Jimmy Choi, who has lived with Parkinson’s 20+ years. He posts jaw-dropping videos of his workouts and exploits on American Ninja Warrior. But his most inspiring is a video taken in his OFF state, the truest portrait of his strength and courage.

I realize now that “looking great” has kept me from being truly seen.

Someday I hope to have the strength to show the real me. The whole me. Shakes and all.

Consider this a start.

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