OUTSMARTING THE PARKINSON’S BRAIN

Parkinson’s tells us we’re weak. Slow. That our bodies can’t be trusted. Here’s how to talk back.

Thursday morning in the famous “Dungeon” at Trinity Boxing Club: the Moving Brains workout. I’m supposed to step up on the high box, but my legs feel too damn weak.

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.

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