Shakin' Street — A Parkinson's Blog

Last week I attended a talk by Dr. Ray Dorsey, co-author of New York Times best-seller The Parkinson’s Plan. The event was presented by the Brian Grant Foundation.

Dorsey’s book, written with Dr. Michael Okun, takes the position that Parkinson’s is to a large extent caused by environmental factors such as pesticides, cleaning solvents, and other chemicals.

The authors believe individuals can often avoid getting the disease by avoiding those substances — and that we can greatly reduce the number of cases by banning those chemicals.

I came into the talk feeling somewhat cynical about our chances. Congress barely functions.

Is there really any reason to make the effort if nothing will happen?

Dorsey set me straight.

He described a conversation he had with Senator Shelley Moore Capito (R) of West Virginia. Capito, with Senator Chris Murphy (D) of Connecticut, introduced the National Plan to End Parkinson’s Act.

Capito, said Dorsey, doesn’t have a significant personal connection to Parkinson’s — no close family or friends have the disease.

But she heard about it repeatedly from constituents. Some were organized, like the Charleston Parkinson’s Support Group. Some were just people she ran into in the grocery store.

Meanwhile, her Democratic colleagues were also hearing from the people they represent. And national organizations like the Michael J. Fox Foundation were banging the drum in Washington and elsewhere.

The efforts persuaded a bipartisan group of senators and representatives to write the bill and push it across. The final vote wasn’t close. The bill passed 407-9 in the House, and unanimously in the Senate.

Dorsey made a strong case that by combining and amplifying our voices, we can move our representative government toward taking further action.

As a starting point, he urged us to email Lee Zeldin, who runs the United States Environmental Protection Agency, and ask him why the US government hasn’t banned Paraquat yet.

Zeldin’s email address is zeldin.lee@epa.gov.

My email is going out this week. I invite you to join me.

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Fighting “Ohtani:” Giving My Case a Name

John Wayne referred to his cancer as “The Big C.” Baseball great Kirk Gibson calls his case of Parkinson’s “Parky.”

Giving a serious disease a nickname can open conversations, reduce stigma, and communicate support for others dealing with the same condition.

Chris Anthony, who writes the From Where I Sit blog on Substack, calls his affliction “Phil.” Save your outrage, Shakin’ Street readers: he named it after the great pitcher Phil Niekro, master of the knuckleball.

Even the pitcher doesn’t know where it’s going…

Ever tried to hit a knuckleball? It floats, dives, and refuses to behave — kind of like my right leg on a bad day. You don’t predict it. You don’t power through it. You stay loose, stay balanced, and hope your timing holds up.

Parkinson’s throws those same kinds of pitches — slow-moving but tricky, unpredictable in all the wrong ways. That’s why I go to the gym. Not because I know what Phil’s throwing tomorrow. I go because I don’t.

While I’d have preferred that he’d named his affliction after Hoyt Wilhelm or Wilbur Wood, I can’t argue with his logic — Parkinson’s is a knuckler.

With the 2025 World Series in full swing, I’ve decided my case deserves its own name. I’m calling it “Ohtani.”

Shohei Ohtani may be the best active baseball player on the planet. Three Most Valuable Player Awards, in two different leagues. He’s one of the top hitters in the game, and can pitch a little, too.

If you’re on any of 29 Major League Baseball teams, Ohtani is an incredibly formidable opponent.

He’s a hitter nobody wants to face. But he doesn’t succeed every time. In the first three games of the National League Championship Series, the Milwaukee Brewers held him to 2 hits in 11 at-bats (.182), no home runs and only one run batted in.

Milwaukee had him figured out…right?

Then Game Four happened. Three Ohtani home runs. He also threw six shutout innings as the starting pitcher, striking out ten.

Just when the Brewers thought they’d vanquished the mighty Ohtani, he singlehandedly bounced them from the playoffs.

Those of us with Parkinson’s have a similar challenge. We can do everything right — exercise, clean up our diet, work with our care team to fine-tune the medication, even implant electrodes in our brains.

Doing all that will hold things off for a while. Maybe a long while. But sooner or later, Parkinson’s adjusts.

It’s not hopeless — if we can hold it off long enough, someone’s bound to find a cure. The National Plan to End Parkinson’s Act betters our chances.

But until then, Parkinson’s keeps swinging. Today’s strategy may not work tomorrow.

I’ve named my opponent Ohtani.

Game on.

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Bonus for Those Who Read to the Bottom

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South Korea’s Kim Sisters lend their harmonies to the Elvis classic.

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Just a boy, his dad, a trombone, and an oven.

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Turns out that with a lot of skill and some electronic thingamajigs, you can play “Dueling Banjos” on an accordian.