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My Parkinson's Journey

In which Terri shares a humorous look at her journey with Parkinson's disease and Dystonia:

For me, illness and health are not opposites but exist together. Everyone has something that is challenging to them. Mine just simply has a recognizable name. My life will take a different path because of this but that's okay. Everyone has changes in their lives that create their path.  I'm learning how to enjoy whatever path I'm on.

PD and the Bureaucracy: A True but Lengthy Tale by Ed Sikov

Terri Reinhart

Ed originally posted this on our "Patients Like Me" group forum.  I read it there and begged Ed to let me post it here in my journal.  Ed Sikov lives in New York City and he is a real writer.  People actually ask him to write books.  He has written a number of celebrity bios, including, Dark Victory: The Life of Bette Davis, Mr. Strangelove: A biography of Peter Sellers, and On Sunset Boulevard: The Life and Times of Billy Wilder and several books on film history.  He is also a good friend. 

Thank you, Ed, for sharing this article with us. Not only is this educational for all of us who are coping with Parkinson's or other health challenges and coping with various beauracracies, you're also a master storyteller.            ~terri

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PD and the Beauracracy:  A True but Lengthy Tale              by Ed Sikov

I live in NYC, and every few years I get a notice for jury duty. I’ve been on 3 criminal cases, been empanelled for 1 civil case (but the parties settled before we got to trial), and been dismissed once or twice after not getting selected for 2 days of service. In other words, I’ve done my part, and I enjoyed doing it.

This year was different – I got my notice and was terrified. Why? Because my particular version of Parkinson’s means that while I’m “on” every morning, I’m “off” for at least an hour, maybe 2 every afternoon. I have memory problems all day. I’m just not as sharp as I once was. I had visions – based on my experience of every day since last summer - of myself falling asleep during testimony; failing to remember testimony; getting confused over testimony – in short, having what happens every day when I’m safe at home happen in public during a trial when a defendant’s freedom hangs in the balance. So I got my neuro to write a letter recommending that I be excused.

All went well at the courthouses – the person at the first one sent me to the second one, which happened to be the one with the vast steps on which Sam Waterston et al skip up and down on LAW AND ORDER. The first fellow I saw there was great – very understanding and sympathetic. He asked me what prevented me from serving, and I told him. Fine, he said. But then he went away and stayed away a long time, came back, and with a look of sorrow and embarrassment said, “My boss wants to talk to you.”

Enter the bureaucrat: we’ll call her Pearl S. Bickle, Vice-Assistant Jury Clerk, New York County. Ms. Bickle, wearing a smart knit suit the exact shade of “I Can’t Believe It’s Not Butter” and an ugly strand of costume pearls, sat me down and, with her face pulled so tight that her mouth stretched wide as if she was smiling, said, in an equally rigid voice, “I have a friend who has PD, and he runs a multimillion dollar corporation!” Then she just sat there grimace-grinning at me.

What was I supposed to come back with? “I’m sorry”? “How nice for him”?  “What do you want me to do – throw up?”

I said, “We all have different symptoms.”

She asked me why I couldn’t serve; I described my average day – being fine in the morning and “off” in the afternoon, with memory problems confirmed by a neuropsych exam. Though she had never heard of a neuropsych exam, she was clearly certain that PD had no symptoms other than tremors. I started feeling frustrated, angry, and insulted. She then launched into a literary critique of my neuro’s letter. It was wrong, vague, incomplete, poorly written, and didn’t serve her purposes at all. No, siree – not at all. Didn’t he understand anything?

I thought – “Yeah, lady – he’s working his ass off in the hospital and seeing patients every afternoon in his office while you run your pathetic little fiefdom as Pearl S. Bickle, Vice-Assistant Jury Clerk, New York County. The idea that a brilliant physician educated at the University of Bologna should be condemned by this civil servant hack was ludicrous but it was happening and I was in the middle of it struggling not to lose my temper in a courthouse, get arrested, and thrown in NY's infamous Tombs. Still, I imagined setting fire to all the papers on her desk, just to see the look on her face.

She then began firing off instructions about improving the letter to her satisfaction in a voice so soft and rapid that I had to ask her to repeat herself three times. Then I asked her to please write down what  she wanted.

Suddenly Pearl S. Bickle found her voice: “CAN’T YOU REMEMBER IT?”

“No,” I said – “That’s the problem.”

“BUT YOU’RE A WRITER!”

“Yes,” I said – “That’s another problem.”

“You’ve got to keep busy,” she advised. Oh, thank you, I thought – I hadn’t considered that option. Wow! A new idea!

After ten minutes more of this irritating and, to my mind degrading treatment, I finally convinced her that my symptoms were real. To which she responded, “What if you get better?”

In a voice trembling with rage, I informed her that PD was a degenerative illness, an the likelihood was that I would either stay the same or get worse. She simply did not believe me.

I asked her if she thought it would be fair to all concerned if I were to fall asleep in the jury box during a trial. She finally acknowledged that, well, no -  it wouldn’t be a good idea, and she decided that if I got my neuro to write her an acceptable letter the way he should have done the first time, one that said the following things – 1) blah 2) blah blah 3) blah blah blah – she would reluctantly consent to remove me from the jury rolls.

As she escorted me to the door, she blew me away by mentioning, “Actually, my friend with the Parkinson’s and the multimillion dollar corporation has a staff of hundreds to do his work for him.”

The gall. The stupidity. The pointlessness. The bureaucracy!