Jul 25, 2005

Chapter 48

Parkinson’s Underground

One of the six lawyers seemed to have forgotten that the amended list replaces all previous lists, telling the judge: Mr. Dawson is in Contempt of Court; he has not handed over certain documents, despite repeated judicial orders, … such as:

… Section No. 8 in subpoena No. 3: – surrender to the court, all correspondence, letters, e-mails, audio or visual recordings, website posts, journal entries or any other form of communication or record-keeping, whatever it may be, wherever it may be, deemed retroactive from 2012 to 2006 inclusively, in connection with all your public activities, including but not limited to:

- smuggling nuclear fuel rods to Iran;
- camping on Killiniq Island with no visible means of support;
- placing a submerged rock in the path of the Costa Concordia cruise ship;
- organizing a labour union for pirates in Somalia;
- re-igniting Russia’s Czarist imperialist nationalism;
- damn near set off World War III, just to prove a point;
- bothered the Dept. of Indian Affairs and Oil Drilling Permits;
- infiltrated the Dept. of Tactical Metaphysics and Applied Historicity;
- encouraged People With Parkinson’s to hurl their walkers and wheelchairs at police barricades;
- plagiarized relentlessly;
- created puzzlement with the Enigma Machine;
- Celine Dion.

(He claims that he is not responsible for Celine Dion. All the rest, he would plea bargain.)

There are no such documents. I know that there are no such documents. They know that there are no such documents. They know that I know that they know that there are no such documents.
And I know that they know that everyone will think that the documents MUST exist. Why would they repeatedly demand them if they don’t exist? How could they know about the Somali pirate’s union if there was no such thing? Obviously, these documents MUST exist and refusal to hand them over is a case of disobeying a judicial order, punishable by imprisonment if they wanted to be nasty. But who would want to be nasty to a nice guy like me?

In the crowded lobby of the court house, a man said to me, “What time is it?” And I laughed and said, “Yes, I know what you mean.”

I’ve seen your feet walk by themselves.
Just about everybody in the courthouse was doing voo-doo; dressing up strangely in black dresses, especially the men; searching for omens, no Delphi Oracle to advise them, paying religious homage to the most minute entrails of the revised Napoleonic Code, to find something, anything, to justify enlisting the judicial system in some private scheme.

You want the WHOLE truth???
How much time you got?
Now, y’all bugger off. These days, I can’t read so good, so don’t send me no more of them subpoenas and injunctions and such like. I got no use for them. And my doorbell is busted, on account of all them bailiffs buzzing it all the time.

I don’t speak no Latin. I ain’t never been to Latvia.

Me and my posse is law-abidin’, law-enforcin’ citizenry.
We ain’t no chickens.
We is chicken hawks. We eats chickens.

Don’t say I didn’t warn you
When your train gets lost
Gotta’ run. I got a mail train to catch. I brought my ivory letter-opener. A letter-opener is always useful on a mail train. Have a pleasant tomorrow. Oh and when the court case is over, and the mob stops screaming “More!”, I would appreciate being told what it was all about. 

Through a glass darkly
What were the First Stories of this advanced civilization? They do not want to talk about it, and they are offended by the question. They boast that they are too sophisticated and modern to believe the Stories, but that does not stop them from re-enacting them over and over again.
I am told that Eden was burning; they got kicked out of the perfect Garden, for misbehaviour; innocence lost; and ever after, they seek to get back to the Garden, restless, murderous; aching for something that is missing, but not knowing what it is; sampling everything frantically, hoping to find again what they vaguely remember having lost.

And their Next Story is worse - about a man who killed his brother. Cain, the first farmer, the architect of civilization, put up fences and put down people, suing trespassers, building permanent shelter, declared war on the wild people.
Cain invented government by fear and he ruthlessly demonstrated to the world how far he was willing to go, when he deceived and murdered his own brother, Abel, the hunter-gatherer, the shepherd, the wild man who lived somewhere in the hills, who never recognized the authority of fences. Cain’s complaint was that the animals trampled his crops, and the gatherers sometimes gathered his cabbages.
Cain had to “own” the land, and fence it off, and chase away the hunter-gatherers. As a result, real estate brokers became the next oldest profession, and police were needed to protect ownership, so government became necessary. Thus civilization was invented; it started with fratricide, and went downhill from there.
And the hunter-gatherers of food and the hunter-gatherers of the spirit were destroyed, assimilated, or put on Reservations, banished to the badlands, pushed out of sight and out of mind.
It is still going on today, at the sharp edges of the antithesis; the synthesis may come too late to save us. It is the doctrine of mutual sorrow.

It gets worse.
In their Sequel Story, they tell of a man who came wandering out of the desert; a Man of Peace, who spoke of Higher Love.

So they nailed him to a tree

Their religious ceremonies made me more and more depressed.
They had somehow breathed backwards, and removed the poetry from the poetry.
Christmas is do-able, what with Santa Claus, and the cute baby in the barn, and Mother Mary, warm and beautiful; but Easter? Like the trenches at Vimy Ridge, it is not a place for someone with an over-active imagination, or multi-layered selfhood that just barely holds together at the best of times.
Even as a child, I could feel the nails being hammered in, one by one, and hear the cry of the forsaken, and the snarling of the enforcers, and the gloating of the mob.

Now, decades later, I could not bring myself to testify against those who sought to silence me, so heart-breaking was the loneliness chiselled on their forgotten faces. My God, what have they done to you?

They were wrong, and I was right; that much was self-evident; but it was they who were starving, not me. I did not want to increase their burden.
I came to court prepared to speak of the harm they had done to me, and to others, and to denounce the treachery of their methods; their blindness to Beauty and their blankness of Soul, and tell them to never again darken my door.
I was going to tell them it is not enough to plunge into remorse, and say sorry. The chain of events must be broken.

I did not have the heart to tell them their doctrine of mutually assured sorrow is an idiotic farce and an abomination. I did not say all that I knew. I had no lawyer, or no lawyer had me. I was questioned on the witness stand for three hours. It would have taken 30 hours to get them out of their rituals and into method-acting for their roles in the script. I wanted to write the script for them; it was a great ensemble cast, starting with the judge. But I was tired, weaving in and out of the haziness of levodopa and the speediness of seligilene; and the risk-seeking compulsions of Mirapex. The tremors were starting, and soon they would shake me off the chair, onto the floor… From the back of the courtroom, Ursula glared at them and shook her head… The judge looked at her, his face dropped, and he immediately halted the questioning.

They were very kind to me, at the courthouse. They knew about Parkinson’s and how it affects me, and they treated me with the utmost respect. They even brought me to the city a day earlier and kept me in a hotel, at their cost, so I would not be DOA – Dopamind On Arrival. I was supposed to behave like a choir boy. I’m a good actor, but not that good.

The Parkinson’s Underground fought year after year for our right to be full citizens, participating in whatever we choose, with the rights and duties of citizens, such as being a witness in court. No profiling! No discrimination! Equal rights! Handicapped access to everything, no matter the nature of the handicap, no matter if the inhabitants are willing or able to receive us.

But now I am not so sure. It was very, very hard for me to go to court. It took weeks. Stress is deadly when channelled by Parkinson’s: part of your brain just freezes and stops and then is flooded by anxiety, premonition and dread, for hours at a time. DO NOT PANIC

Yet after all the effort to get there, I did not tell them everything.
Maybe it is not true that we can or should participate in the activities of society. Maybe it is doing no one any good for us to encourage Parkies to come out of their isolation.
Maybe isolation is tranquility we need.
Maybe trying to be part of something is what kills us.
Maybe we are children of a lesser god.
Do we really want to be present when our presence makes others uneasy or afraid? When it is a question of human rights, yes. But day-to-day, impose ourselves in any place of our choosing?
We demanded to be treated “just like everybody else”. How’s that for self-delusion? Just like everybody else? We are not like everybody else.
Are we “differently abled”?
Sure, but we are also really screwed up.
Part of every day, we are incapacitated, which we stupidly call “Off”. Part of every day, we are “On” and may appear normal to others. The “On” times get shorter and the “Off” times get longer. If I am “On” for a few hours, everything I have to do has to be done in those few hours. Why spend that time trying to live “as an equal”? 

We are dependents, not equals. We are dependent on the equals.

I do not have equal opportunity to become President of General Motors. So why pretend that I could or would or should? What part of “outsider” does the Parkinson’s Underground not understand?
Is it another symptom that can be masked with pharmaceuticals? Or is it who we have become? There ain’t no cure for being yourself.

Some say there is no known cause for Parkinson’s; some say almost everything is a cause – from pickled fish to pesticides to trauma.

And how come so many Parkies are writers and agitators? Or is that scribblers and agitated? Would somebody please figure out what this disease is trying to do to the human race? And to me in particular? It is unnerving when your disease appears to have a plan.

Whose testimony will be believed, in any trial? The Parkie -vs- the Normal?
Parkinson’s changes cognition. In the brain and the nervous system and the muscles, lots of things are going wrong. Is the testimony of a Parkie as valid as the testimony of a Normal?
Am I a credible witness? Do I understand the questions? Do I understand the relationship between questions and answers? Do I understand the passage of time? Do I remember what happened? Do I see the same cause-effect patterns that they do? Is something being lost in the translation? How can you believe a brain-damaged real estate salesman when all the other witnesses are so elevated over time and space that they are never on the wrong side of history: the people who have the power to know things “beyond a reasonable doubt”.

When your name becomes a verb
It was my turn to wonder where I had landed. I could not remember a single instance in my entire life where I had known something “beyond a reasonable doubt.”

To conquer doubt – truly these are men of steel with immense mental powers.

In the courthouse they had elaborate and secretive ritualized ceremonies, with code words and secret virtual handshakes, which I could not understand.
It was not clear what the topic was; the headlines; what they wanted me to describe. We are gathered here together on this sacred ground… to do what, exactly?
I was taken aback when they started chanting – a combination of Gregorian chants, Inuit throat singing, and Mongolian overtones - as they tossed human sacrifices into the volcano.

I found this stressful. But who am I to judge their culture?

If I had to be one of their burnt offerings, I would throw myself into the volcano without their assistance, becoming a foot-note in their religious history. Or maybe get a religious holiday named after me, if I have the presence of mind to garble their thinking with the Enigma Machine, before leaping into the molten rock.
Some will say, what a moron. Some will say, there goes a saint. Some will ask, was he insured? And the day after I jump into the volcano, they will announce the cure for Parkinson’s, and my name will become a verb.
What happened to Sammy?
Oh, I hear that he dawsoned.
Oh, that’s too bad.

A Crunchy Epic
I am better off to ignore the whole situation. Tell them I don’t speak English or French. Tell them I don’t speak at all. Tell them it’s contagious. Tell them I have diplomatic immunity as Ambassador from the Future, with a passport from the Inuit Circumpolar Alliance. Tell them they are all under arrest for claiming to “own” the rocks.
So I went back to my tribe and they went back to theirs, and the inter-tribal synthesis, once again, did not evolve.

Nobody can say we didn’t try. And we left traces of our brief presence:

(1) We posted all the Killiniq chapters in cyberspace, where, within seven generations, the descendants of the Inuit of Killiniq will stumble across them and be surprised.

(2) We built two inukshuks – one on Killiniq Island; the other on one of the highest peaks of the Torngat Mountain Range. Whosoever spots an Inukshuk must divine who built it, and why, and what message does it solidify, in stone, between ice ages.

(3) We threw more bottles into Ungava Bay and Hudson’s Strait, this time with messages in Inuktitut.

Crunchy, and legit
For several years now, Oracles have warned me to chill out. The function of the Court was to say: or else. That adds some crunchiness to the advice.

My reply has not changed: Me and my posse is legit.

And just saying so in court is worth all kinds of street cred among the denizens of the Parkinson’s Underground.

To you, with shaking hands, we pass the torch.
Hold it high.
Hello? Who is this?

DUCES TECUM ….. yeah sure. How many photocopies you want? Any day,, any where…. Free fotocopie service for lawyers fishing for any word I wrote that could be retroactivelie deemed to be whatever tjey need it to mean to prove htheir case

No, I am not in hiding, I am sstanding beside the road talking to somebody’s cat. / I’m not exactly hard to find/

…. The lawyer pretended too forget AMENDÉ. you don/t go around pproclaiming your loyaltyy to the sanctity of corporate contractss ./ and your reverence for DUCES TECUM and then say you forgott amended list replaces all previouss list and using itto hassle people hoo just happpent to pcik up the tleelphone wheni calld how stupid u think I am

verrry stupid u r thinking I am

And that was a differentt story altogether4. The story they put on trial was not the sstory thaat was acxtually ihapppning.//// they nottt having The Real so they substitut with pplacebo just like Parkinsons scyentists = \\\\

Everybody kknew \\\\\

then they alll turned and lookt at me and I sed:

“Problem? What problem?”
I remember a Darcey Jerrom summer when this song was Number One among the Métis and the Cree in northern Manitoba. It is a good thing Darcey discovered the Blues and guided us away from this, and then he became a top designer of unique non-rectangular building structures made of wood, as no one predicted.
We brought back this song to show it was a near thing. There was a tendency to take everything as far as you could. The edge was always the place to be. Or so we figured at the time.
This is the Ministry of Sound. That’s a Black & Decker electric drill you hear; sometimes they used chain saws as musical instruments. They would scream at the people: “Thieves and liars!” 

We submitted this video to the Court as evidence for the Defence, so the Court is legally required to play it all the way through. You don’t have to like it, but you can see they were searching for something beyond a reasonable doubt, which is the Holy Grail of your legal system, and your science system, and your disdain for spirituality.

The Ministry filled a hole in the culture. Somebody had to.
“You realize, of course, this is your last goddamn chance”. Now that’s some straight talk. I would vote for that guy. And we took the chance.
Notice that Cain’s fence on stage, to protect them when the audience throws bottles and rocks.

Thieves and Liars.
He says, “I can’t hear you.”
And then he says “I still can’t hear you.”
Your Honour, turn it up loud.
This song is evidence that it is possible to get here from there.
This song is not about how it is.
This song is how about how it was,
before we could see,
through a glass, darkly,
how it was meant to be.
The Forbidden Fruit gave us Knowledge,
riddled with ambiguity, contradiction, historicity, doubt and guilt.
The last time we knew anything for sure
was before we had Knowledge.
We submit this video as conclusive evidence
that it is possible to get from there to here.
“Court is adjourned until 9 a.m. tomorrow. All rise.”
Is it something I said?
Anybody wanna’ go for pizza?

Comments from the Parkinson’s Forum at Neurotalk:

Now, for some cinéma verité

(The Parkinson's Forum at Neurotalk has 50,000 posts - by people with Parkinson's. Anything about PD - you will find it discussed at Neurotalk)

As a land surveyor I was an expert witness in more cases than I can count. It was my favorite role and I enjoyed it thoroughly. But, as you probably noticed, it can get stressful when you have a team of intelligent and well paid men trying to subtly show that you are an idiot. The last time I was involved in a case, the attorney on our side explained that I had PD. I confess to having used that to gain sympathy. But it was, indeed, the last time and I yielded the role to younger men.

So what is our role in society, you ask? I suggest that it is the same as that of the canary in its cage deep in the mine. We are saying with our bodies that something is very wrong and society had best pay attention.

(Reverett 123:  Born 1953. 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000. Currently (2012) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present.


Dear Bob,

I think if we could see the energetic and psychic impact interacting with people really looks like we'd be amazed at how deeply we are connected. I was a defendent in a lawsuit regarding a historical land survey where our land , water well and potentiallly our home were all at stake and the strange thing is that pd sx became evident for me at the time the neighbor who sued us moved into our area-long story but i will also say after a long protracted suit once settled and they moved away I started feeling so much better - the pd sx abated dramatically
I did ok on the stand for the most part but the prosecuting attorney was kniving and expert on pushing buttons and finallly got to me. Court rooms are full of REPTILES!
PD does make stress visible as Rick says...canaries in a mine....and beware the psychic influences that also are at play -sometimes i wonder if there are some ammong us who could cure their sx by leaving a stressful marriage, neighborhood, job etc. we are walkingg biofeedback machines indeed!

Smooth seas do not make skillful sailors....
Nature loves courage.
(~ Brooke Wright)
REVERETT123 replied:
What are the odds.....?

....that moon daughter would have had to deal with such a rare experience as a boundary dispute and would have been on this forum when the subject came up? 'tis an odd universe. [I would have enjoyed helping you beat that carpet bagger, BTW]

Good observations on stress. One of our number (Harley?) was going through some unusual testing and was hooked up to monitoring equipment when the physicians noticed that every time her significant other came into the room that there was a strong negative response within her. Ending that relationship greatly improved her symptoms. A lot of PWP (young onset in particular) seem to have spent a lot of our lives putting other people first. Maybe a part of us gets tired of that and rebels any way that it can. Take that a little farther and you could see a lot of our symptoms as the outward manifestations of inner conflicts. Tremor. Rigidity. Slowness. –Rick

CONDUCTOR 71 said:
If I am going to live like this, I need answers
I am fed up. I can deal with this disorder, but I can no longer hack the medical "professionals" who just wash their hands of us. I can give in to the sense of physical helplessness but not the psychological one. Do doctors really expect us to passively accept all this and not probe or push them farther to actually do something meaningful for a change like actually condone; for example, low -dose Naltrexone. I just cannot sit idly by on the sidelines while other people and this disease run the course for me. If any of our doctors had this, can you see them kicking back with DBS and the status quo?

... In 2000 I was walking in Central Park in New York City, only 6 weeks after I allowed some little bio-tech company in New Jersey to drill into my brain and add transplanted cells, never before done to any human. Was I nuts? No, desperate! And I still am.

How will we ever find the cure if people with and without the disease don't join clinical trials. Afraid? The future is a fear far worse!...
… The scientists have painted themselves in a corner with this disease. I have had it (endured it) for 18 years and nothing new (just copycat drugs in a different dispensing versions).

We have patient power - let's use it!...  please be bold and tell it like it is - like it should be - and it will be. "Build it (cure it) and they will come!"

FIONA said:

I think the first step is to get people out of the jail of fear, fear of this silent, secret attacker, the one called Parkinson's Disease.  I was reading about Nelson Mandela's time spent in prison, and despite privation - hard labor, incredible isolation, threat of violent treatment, lack of proper food and clothing for so many years - somehow he was able to keep his integrity and personal center, and imagine and plan for the renaissance of his country and the integration of its peoples during that time. He kept his inner strength intact through circumstances custom-made to enhance fear and PTSD in anyone. I am thinking a lot about this these days, and how it might be applicable to our situation.

Sah-PCA wrote this  poem called “Awful”. Sah-PCA has a neuro problem caused by an aneurysm, not Parkinson’s; yet this description is exactly what many People With Parkinson’s feel, as the “On” state slides down towards the “Off” state, again.

Ok, here I go again
The awful rollercoaster ride
Sliding down fast, like re-living the past
Heart jumping and pumping way too loud
Screaming in my head, no! no! no! not now!
Please, please let me get off this awful ride

I didn't buy the ticket
I wasn't standing in line
How did I get here this time?

Sweat forming on my brow
Afraid and scared, but still can't scream out loud
Please, please let me off this awful ride
Please, oh please let me find a place to hide.

Somewhere to bury my head in the sand
Some place safe, to leave all of this behind
Please let me off this awful rollercoaster ride

Senior Member
Join Date: Aug 2006
Location: Florida
Posts: 3,835 

After at least 25 years with Parkinson disease, one expects to slowly become less functional in every way.

Communication becomes slurred, muscles freeze, swallowing becomes difficult and- last but not least -there is a constant danger of falling. All of these symptoms can lead to other health conditions that are also life threatening.

Our insides are sluggish and backed up also. Inside tremors are not always visible to the eye but they reveal themselves on machines. The internal tremor alarms doctors who are not familiar with pd and they learn from the experience. I have demonstrated this learning experience to at least three doctors and a paramedic team. My gastroenterologist sent for my husband before putting me under with anesthesia because of monitor irregularities due to internal activity.

Pwp have a high tolerance for discomfort.

How will our lives conclude with this illness? So many possibilities, but mine was revealed to me with an esophageal cancer diagnosis after what seems like a lifetime of painful food backup, bloating, and heartburn. I don’t know or care if it was the pd that caused it. I used to smoke and drink, but I suspect the sludge that ferments and creeps through my digestive system wore out my esophagus.

When I woke up from the endoscopy my doctor said, “you have a tumor,” I asked ‘is it cancer?” He said ‘I think it is; you will need chemo and radiation.”I looked at my friend and said “I finally got a way out.”

It doesn’t stop there. Lymph nodes are next and now it’s just cancer as it is beyond the esophagus. Little sprinkles of it scattered on the PET SCAN – some here and some there.
"If you have symptoms,” explained a very well respected oncologist, “you are already past stage 1 where there is a 90% survival rate. This is almost always found accidentally. This quickly drops to 30 per cent if it’s in the muscles and down to 10 if it’s in the lymph nodes, and of course I have a spot on my lung. Not identified yet but it is likely going to contribute to what is indeed a way out - like it or not.

That brings me to the reason for writing to you all. I’m going to list the rest for brevity and clarity.

I am not afraid. Whether you realize it or not, Parkinson prepares you for death, especially as the years go by and you suffer losses all along the way that you can’t get back - like carrying my new grandson while standing up-no balance.

I am not depressed, I’m relieved. I basically haven’t felt well since I was 35.

I have become pretty cynical about the medical community and seem to see more waste, competition, repetition and dishonesty than success and compassion.

I am not going to fight it. It will only destroy all the gains I’ve made from exercising. The oncologist said I have no cogwheeling and he’s never seen someone as “normal” as me after 23 yrs. After reading an article called “Doctors Die Differently” I learned that doctors don’t take as much treatment as they prescribe. I decided to do what the writer suggested in the article and ask what each of my doctors would do?

The general practitioner hugged me and took my shoulders and said “YOU MUST FIGHT THIS.” The gastroenterologist said take the chemo and radiation, it may buy you some time. He's a sweetie but his job is to keep me alive.

The oncologist said, “I probably wouldn’t take the treatment. I think we have the same view about death. It will make your pd much worse and it’s too far advanced.” God bless him . He said he might suggest a little radiation to shrink the tumor to enable me to swallow. Therefore that’s our goal. Attempt to shrink the esophageal tumor so I can eat and travel.
Today, under pressure the doctor said most doctors would say I have 6 months. Maybe,more, maybe less.
Here are two statements made by my oncologist that I have never heard before from a doctor:

“Hey where are you going? We aren’t finished yet!”
When asked if I should go into a rehab center for treatment, he said,
“Good Heavens No! You’ll never get your meds on time there!!”

My faith guides me everyday – one at a time. “Fear no evil for thou art with me.” I believe I am in the right hands.

"Time is not neutral for those who have pd or for those who will get it."


You have the wisdom, fortitude and insight of a survivor living with pd for so many years. Thank you for sharing the knowledge you gained to help others who walk the path of pd understand it a little better. Thank you for your compassion and heartfelt words that hugged those in despair and shed a ray of hope on their day. Thank you for being such a vibrant part of this community. and now, dear friend, please know that we are here for you. whichever path this road you are on goes, know that we are here to hold you, to listen, to support you and to pray for you. We love you Paula.
I have Parkinson's Disease, Parkinson's Disease does NOT have me! 

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