Apr 15, 2006

Chapter 23

Chapter 23


The above photo was MOST CERTAINLY NOT taken by a Person With Parkinson's, ambushing a major bio-med investor with a camera, tape recorder, and questions about what was done to the Parkinson's volunteers, the Monkeys in the Middle. Move along now. This gala is by invitation only. Step away from the car. No photographs allowed. Move along before we call the police. Nothing to see here folks. This did not happen. It's none of your business.

Underneath the white moon rising
Something's stirring, on the prowl
Sunday morning 6 a.m. Ford F-150 with Ontario plates crawls up the long driveway slowly. It's JimmyBear. What the hell is he doing here now? Ursula says we told him to drop in anytime. This is anytime.

He gets slowly out of the truck and he has that grim smile that makes me feel uneasy. When he laughs, it's a joyous uproar; usually he has the Parkinson's mask - the frozen, expressionless face that makes people think we have no feelings and possibly no intelligence; no, that rigid smile that Jimmy makes is something else. It confuses me, like being in a foreign city and thinking that the person across the street is an old friend, and I rush over and say hello and they back off, frightened, having no idea who I am, and not understanding the language I am speaking.

Ursula says he does that when he is angry. He smiles when he is angry.
That is not re-assuring.

Oh great. Jimmy is often a big teddy bear, but his default position is Grizzly. Angry Grizzly at 6 a..m. Lie down and play dead, they say.

He wants to get some Mirapex from me because he has run out by over-dosing and the drug store won't front him any because they no longer believe his repeated story about going to live in the mountains for a few months, thus needing more drugs to take with him.

Jimmy, I am not your dealer. Go ask Madman Marty.
I did. He said to ask you, you're the President.
Precisely Jimmy, I have to set a good example for all you white trash.
That's what you would be doing. Setting a good example. Everybody must get stoned.

And then he told a confused story from Madman Marty about what a great opportunity it is that the Mayo Clinic has gone nuclear, firing back at the spastics with all guns blazing, and we can use that, surf on it to rattle some cages.
That's a mixed metaphor, Jim.
Marty says this could be huge.
Jimmy, when dealing with Madman Marty, always keep one thing in mind. He is mad.

Flash cameras, motion detectors, photo every 2 seconds if something moves.
Big Brother is watching. But it's okay.
Because I am the Big Brother.

If you should wander in the hills at night
Where every path deceives
Is that something coming up behind you
Through the shadows thick as thieves?

(Born to Howl - Ride Away from the World)

It took JimmyBear 3 hours to get to our house because he travels the back roads at night, hoping to avoid the police. His drivers permit was revoked 4 years ago, for Driving with Parkinson’s. Actually, having been a stock car racer years ago, he is one of the best drivers on the road. They did not test him, they did not talk to him, they did not listen to him, they did not meet him, they do not know who he is, they just sent him a letter in the mail, saying that people he has never met decided to make a dramatic change in his life. With Parkinson’s, we are very, very accustomed to being treated that way. The key example, of course, was the Amgen experiments, where volunteers found out by e-mail that people who had never met them had decided to unplug them, without taking into consideration the overwhelming evidence that could be obtained only by listening to them.
We all know that sooner or later, with PD, you can no longer drive safely; sooner or later, you get fired from your job, as your abilities deteriorate. To “err on the side of safety”, some government and health officials simply pull the plug on you as soon as they are notified. And in some jurisdictions, doctors are obliged by law to be stool pigeons, to violate the doctor – patient relationship, by squealing to the cops that they have got the name of a new Parkie. The letter telling you to stay at home and stare at the wall can come within a week. It's another reason many Parkies hide their condition from the world – and from the doctors – as long as they can. JimmyBear has some severe symptoms - but one thing he can still do very well is drive a motor vehicle. They took that away from him first. Just like the disease itself often takes away the things that the patient was most confident about.

And so every time we see the authorities boast that “we did this research and held these news conferences and made these decisions affecting the lives of hundreds of thousands of PWP without actually meeting, knowing, talking to, or listening to anyone who actually has the disease”, we tend to unleash a few animal howls at the moon.

People are being fired from their jobs, just for the fact of having Parkinson’s, not because they can’t do the job. It has become a “security issue”. The security of your employees depends on banishing these destructive gambling sex addicts. Can’t tell one from the other, so fire them all. That’s especially in the small towns. In the big cities, it’s less brutally honest: competitors will go after your clients, telling them about your immoral and dysfunctional brain; you will be passed over for the promotion; you will be quietly excluded from anything that matters. We are back in Medieval times. How can you prove you are not a witch? Especially when the scientists say it is a proven fact that you are a witch, and when you go to contradict them, they switch off the microphone. Nobody at Amgen wanted to let the witches speak.

Let's confess. We ARE witches. We are the New Normal. The X-men. The mutants. We have special powers. We can see through you. We can cast spells. Six months ago, the Mayo was saying 13% of Parkies are out of control. Now it is 20%. And they say that is a low estimate. It is a pandemic, doubling in six months. Soon we will be a majority. Things will change.

We hail from an ancient dream
We heed a different call
We sing the song of things unseen
We sing for no reason at all
Can you hear coyotes crying?
Singing, " We were born to howl"

Memo to: Field Commander Marty

From: Bob Dawson, President


Now you listen up and you listen real good. I don’t give a damn how many drugs you guys take or in what quantity. It’s none of my business and I don’t care. You know very well that you can get all the pharmaceuticals you want by mail from Mexico, India, lots of places. Fill your bathtub up with Mirapex if you want.

But it is part of the Creed of the Organization, post-Amgen, that when the time comes for us to have the brain operation, we are each of us going to tell the surgeon and the scientists, “cure me or kill me, but don’t lie to me.”

Now I find that you and Jim are lying to your neurologist. That is never going to work. All around the Parkinson’s empire, the lies, deception, the refusal to share information, the lawsuits, the shoddy science, conflicts of interest, de-humanisation… we’ve been over that 100 times or more.

You and Jimmy are going to go to your neurologist together and both of you are going to tell him how much Mirapex you have been taking, and why, and the effects it has. If he can’t tolerate your reality, find another doctor. But I know your doctor, by reputation, and he has a lot more guts than you do. Tell him the truth or bugger off. He is going to kick your ass and he is right.

You are a leader and JimmyBear is in your territory and he is a special case. Don’t jerk him around. That is a direct order.

Bob Dawson

Mayo Clinic goes nuclear
on percentage of destructive Parkies

News Flash: Parkinson's patients investigated by world-famous science clinic:

"Shocking things had happened... destructive behavior; gambling... hundred thousand dollars.. engaged in all kinds of sexual indiscretion... as a result of being on these dopamine agonist drugs... ALMOST ONE IN FIVE..... AND WE SUSPECT THAT IS AN UNDERESTIMATE... "

The research did not include any contact whatsoever with anyone with Parkinson's... from reading doctor's notes, they found SEVEN PEOPLE..
ONE of them stopped the misbehavior by cutting drug dosage by a third.
On that basis, it's on television and in newspapers world-wide: scientists have discovered that twenty percent of Parkies become addicted to gambling or hypersexuality, and the 20% is a low estimate.

1,500,000 Americans have Parkinson's. 20% - that's 300,000 people. Where are they? The Las Vegas Chamber of Commerce would like to send them all a one-way bus ticket.

(Update: BlueDahlia points out, correctly, that it would not be 20% of all Parkies, but 20% of all Parkies taking dopamine agonists. Still a very huge number, but not 300,000.)

Marty told JimmyBear about the Mayo Clinic's new study, and Jim drove to my house and told me, and I asked Anuket to read the science report - not just the abstract, but the whole study. You may not agree with her report, but you would have to be able to say why not. The points she makes are very clear. So when her posts were deleted, we knew we had to reply. Agree with Anuket or not - some PWP (my gang) asked her, a PWP, to once again study the research for us. If she is not allowed to speak, we must re-act strongly, because the rules that permitted the Amgen fiasco are still the same rules in use now. We are not the ones who have to whisper.

Marty: At night I have terrible nightmares and wake up screaming; in the day I see things that aren't there.
JimmyBear: I wouldn't worry about it none. It's all in your head.

I lost all my money in a no good gambling game.
-Lightnin' Hopkins

Gambling and sex: as American as apple pie.

Your honor, consider Wall Street. I rest my case.

I have never lived in the USA. But we always knew it was a country of risk-takers, entrepreneurs, gamblers. Wall Street - is there anybody there who is NOT addicted to gambling? With other people's money? Risky enough to demolish the world financial system? And we dreamed of the riverboat casinos on the Mississippi, the card sharks making a living of it, people losing their life savings, an atmosphere of whiskey and women, gun fights about cheating. And the sports betting, the horse racing, and pure physical risk of car racing. The movie "The Sting". What can you say about a country that has Monster Truck Demolition Derbies? And gambling shows up all over the place in American music and literature:

I guess I'll keep on gambling
lots of booze, lots of rambling
it's easier than just waiting around to die

And then came the casinos, and the image we were getting started to change. There were casinos with special crews to clean up after the suicides. They say, some had 30 suicides per year. They say, 30% to 70% of revenue was from problem and pathological gamblers. Lawsuits poured down on the casinos - for failing to stop problem gamblers from gambling! Then problem gambling was declared to be a mental illness. And the stories of disaster are endless: many websites, such as:
Fierce anti-gambling advocacy page:



But still, it was a gambling problem, not a Parkinson's problem, and then suddenly that began to change, as if a dangerous pandemic was building up momentum to create a Parkinson's health problem of massive proportions. Or not. It's a question of fact or not fact, right? You can't just make up a pandemic when there is none. Or deny that there is one when there is. Either lots of people are sick, or they are not. But what do they mean by sick? According to the American Psychiatric Assoc guidelines, 48 million Americans have a mental illness. Compulsive shopping has now been granted the much-sought after prestige of being officially certified as a mental illness. Now they can have their newsletter, with a color photo on the cover, of a wise couple smiling with confidence and contentment, their faces bathed in sunlight.

Would those who have been selected for re-education please line up at Gate 7. Boarding in 5 minutes; do not attempt to remove your handcuffs.

JimmyBear: Why don't those scientists test all their drugs on Madman Marty? Everybody else does.
Me: Yeah, they tried that, but his urine samples kept bursting into flames.

Sailin' down the Mississippi to a town called New Orleans,
They're still talkin' about their card game on that Jackson River Queen.
"I've come to win some money," Gamblin' Willie says,
When the game finally ended up, the whole damn boat was his.

It was late one evenin' during a poker game,
A man lost all his money, he said Willie was to blame.
He shot poor Willie through the head, which was a tragic fate,
When Willie's cards fell on the floor, they were aces backed with eights.

Intruder. Camera #3
south of the stream, beside old tractor road that leads to the back of the barn
1 of 7 photos at 2 second intervals
something on the prowl

(to be continued in next chapters)

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