Chapter 49

Danté's Inferno

a book-length poem written between 1308 and 1321.

It is hell, it is Eternal Damnation.

(And this is not even the worst of the 9 levels)

But you don’t believe in that, now do you?

You find this painting to be “horrid”.

Well yes, it is horrid.

It is hell.

And it is right there, before your eyes

How to Steal from People With Parkinson’s

or Cerebral Palsy

or Multiple Sclerosis­

or what have you:

Like taking candy from a baby

Dear Mr. Dawson,

We heard you speak out for Parkinson’s people around here, and how it is not always the way it seems.

Well you don’t have to go far to have a look-see. What they done to cousin Jimmy it’s a dirty rotten shame and it’s no justice. 

You know Jimmy – Wayne’s brother – Jimmy Paquin of Jimmy’s Chain Saws just outside of Malone? - he sold you a Husqvarna years ago.

He made a decent living out of his little shop until he got the Parkinson’s, what we used to call the shaking palsy, and he got worse real fast. He got the shakes so bad he can’t even gap a spark plug. He calls himself useless now.

His wife Matilda (she’s one of the Tremblay twins, you may remember) went on the internet and found this clinic in Europe where they cure the Parkinson’s but you pay $35,000 in advance. They had videos on the internet of people who had been cured of lots of different diseases and how the pharmaceutical companies try to stop them and don’t want it cured because that’s how they make money, is selling you the pills for the rest of your life.

And so you have to pay $35,000 to get cured and health insurance won’t  cover it.  Even when you got people right there on YouTube saying it saved their lives. They couldn’t get away with saying that on YouTube if it wasn’t true. But the big-wigs and the powers that be and all the lobbyists in Washington and Albany, they don’t  care about us folks upstate, no matter what anybody says different. We got no “Mayo Clinic” in this neck of the woods. We got no neurologists for a hundred miles around.

Well Jimmy never had that kind of money to pay $35K.  Scrounged up what he could, borrowed some, and relatives and friends kicked in thousands – everybody pitched in to fight back against the Parkinson's at least so that he could keep working. He’s got three kids you know. We all had hopes up that we would get our old Jimmy back and he would be like he used to be. We raised the money and we drove him to the Burlington airport. Matilda was crying her heart out; we’ll have a big party when Jimmy comes home and he will be like he used to be.

Jimmy went to Europe. The clinic was closed.  His $35,000 was gone. The doctors were gone.

And hope was gone. 

 

Jimmy had to fly home and tell his family and tell his friends that he got suckered, all their money got ripped off by doctors who were supposed to give you back your life; somebody somewhere took the money and ran. On the way to his deathbed, these “doctors” taught Jimmy one last bitter lesson in life: you can’t trust anybody, especially the ones who say you can trust them.

Tell me again when I’m clean  and I’m sober

Tell me again when I’ve seen through the horror

2. (Anonymous patient, American)

Some were considerably more desperate for a cure than I am. One woman with advanced Parkinson's Disease – she had travelled all the way from California to Germany – told me quite simply that she knew the treatment wasn't scientifically proven. She even realised that there was a significant chance it wouldn't work. "But what is my alternative?" she asked plaintively. "For me, there is none, except waiting until I degenerate to the point where I die, or want to die."

(They made many promises, but they only kept one: they said they would cash my cheque, and they did.)

3. (Elmarie Bouwer, South Africa) (grandson has cerebral palsy.)

I sold my house in South Africa to pay the doctors and for the trip to Germany and the treatment of my grandson. For the entire seven months on the waiting list, my grandson lived for this trip - he watched all the "Patient Story Videos" several times a day.

I was in contact with the clinic in Germany all the time. I often asked if they had any negative experiences with this new treatment - and always the answer was - no negative incidents at all.

I had to pay our flights in full as well as the accommodation. I paid the clinic, to confirm our treatment dates. They put a lot of pressure on me to pay before treatment, so I paid, to keep our place in the line-up. Hundreds of people with neuro damage were waiting.

Long story short - - none of my emails to the clinic are answered, and when I phone - the phone rings for a very long time, then a woman answers who insists nobody is there, and she cannot speak English.

I wrote to them and asked if they ever considered the effect on a cerebral palsied young boy - who has been living for the day he could be treated. A brilliant young boy - who cannot use any of his limbs.

Apart from the emotional suffering of my grandson - he is suffering from depression at this stage - I have paid for treatment which never took place.

And the doctors have just disappeared into thin air - shocking!

Surely there are other families in the same situation? This is daylight robbery to say the least.

I cannot explain the immense pain and heartache to see my dearest grandson suffer as he is suffering currently. He used to be such a happy, smiling young boy prior to this shocking experience.

These “doctors” will have to explain one day soon - and I certainly do not want to be in their shoes...

Elmarie Bouwer, South Africa 

Tell me again when the victims are singing

And the laws of remorse are restored

4. Alisdair Palmer (U.K) has MS:

“Hope is important to everyone, but it is particularly precious to those who suffer from an incurable disease. I am one of that group. I have  multiple sclerosis.

I have to use a wheelchair, and the future is not rosy. So whenever I hear that there is a new scientific development which could turn out to be a cure, or which could at least halt the progression of the disease, I start to hope.

I know that, on every occasion in the past, the news of a cure has turned out to be false: the claims that the new treatment can reverse the disease have all turned out to be bogus.  But I can't stop myself from hoping that this time it's different: this time the elixir really has been found.

I met with Prof Haberland at Dr. Kleinbloesem’s  clinic. He is very persuasive. He is a subtle salesman. He held out the possibility that I would experience enormous benefits from his operation and specifically, that I would be out of the wheelchair within days, after being its prisoner for years.

It requires a great deal of research to show that a therapy isn't going to be damaging. The history of medicine is littered with treatments that seemed to be miracle cures, but turned out to be harmful

And yet – there is always the possibility that a brilliant medical researcher has come up with a very effective technique. So in spite of my well-rehearsed scepticism, I got my hopes up.

My hope focused on a single thought: it is surely not impossible that they have found something that works. And if it is not impossible – mightn't it be worth trying?

It became increasingly obvious that Prof Haberland does not have any clear, objective and verifiable evidence that his treatment provides the benefits that he claims.

It is not even clear that they have followed up their patients at all. I asked for any records showing objective evidence of how patients improved after the operation. None have been provided

If  Prof Haberland's evidence-free method actually worked, it would be scandalous and bizarre for him not to have published his results for all the world to see. 

The YouTube posted by the clinic says the treatment gives great benefit, but they carefully avoid the use of the word “cure” in public. But they say it privately, when they have the victim alone.

We secretly filmed a doctor at the clinic telling a man who is confined to a wheelchair that he would be able to walk again.

So when they say we have lost our memories and lost our minds and our word is automatically rejected (because we are brain-damaged and on drugs) and their word is automatically accepted and made into policy (because they are brilliant and sophisticated scientists) it behooved us to demonstrate that even though we are the spastics, when we say it happened, it happened.:::::: We are not the ones who are telling lies.

So, there is now a  video showing the doctor saying to a guy in wheelchair, who has been suffering for 20 years, that he will be up and walking around in no time, at a bargain-basement price that would be between 20 and 40 Thousand, depending on, you know, depending on exchange rates and unexpected additional costs, and what can be quickly extracted from the patient’s bank account without raising suspicions in his family.

Melvyn Danvers, who runs Danvers International, specialising in transportation for the medical and science industries, said he was owed about £60,000 by the German clinic. “I wouldn’t touch Kleinbloesem with a barge pole,” he said.

I will follow that advice, because I would instinctively grab the barge pole and run amok...

Maybe his actions are considered to be civilized behaviour, and mine are savagery, but do not cringe in fear at my presence: I made a deal with my Doctor and that uber-hot nurse with the clipboard and the starched white skirt that I will behave myself when defending my tribe from marauding bandits.

I must repeat because it is of great importance:

VENGEANCE BELONGS TO THE LORD

5. (Canadian with Parkinson’s)

They had a very polished sales method. They call to chat and  to get to know you and they soon know what buttons to push; they seek out your highest hopes and darkest fears. They have thorough but superficial knowledge of what we go through, struggling to live with Parkinson’s. They used the same vocabulary and arguments, the same lingo that PWP use among themselves and on internet forums.

Our new friends and allies feigned great love and concern about our plight, and they shared our frustration with the lack of progress in fighting the disease. There are hundreds of new medical studies on Parkinson’s every year, but the research produces no results; no new treatment has emerged since levodopa became the “Gold Standard” 60 years ago.  

They seemed to be insiders – they knew that Parkinson’s advocacy began to bite hard in the Amgen GDNF scandal; and they tried to associate themselves with that primordial event, that turning point in the history of Parkinson’s, and they said this is a repeat event – that once again Big Pharma and their buddies at the FDA are callously blocking a cure for the disease. 

It is the GDNF fiasco all over again, they said – the interests of the patients entirely cast aside. 

And they wanted me to join their righteous war against this vicious disease, and against those who put stones in our pathway.

They had figured out that I am influenced more by how it feels than by how it is; and how it is meant to be is where I want us ALL to go RIGHT NOW. 

They suggested I could do some writing or speaking or lobbying for them; spice up their boring and thick-headed information pamphlets about Curing Parkinson’s in 2 Easy Steps. 

(Step 1. Give us all your money. Step 2. Drop dead.) 

And I could go on local talk shows or do a late night info-mercial on local TV to win over the local Parkie market, which would be my sales territory,  and update my fans with the latest PD trends.

Duadopa and Korean dancing are in right now; snorting powdered Mirapex is so last year. Get with the scene, Dean. The cool Parkies will follow me, especially the wave of retiring Baby Boomers, with lots of cash to buy designer drugs. It's going to be more profitable than video games or bundled financial sub-prime derivatives.  You can make Big Bucks in the Snake Oil Biz. I would be a salesman on commissions. I would focus on the Baby Boomers. They are retiring at the rate of 10,000 per day in the U.S., and that will double. My target market would be hippies who became yuppies and made piles of cash, but who still like to pretend that they were at Woodstock. Give me time to seduce them and I will move them to the high end product line.  For example, an operation done by Cells4Health in India for $35,000, goes for $125,000 by a competitor in northern Mexico.
Having been a commercial real estate broker for 30 years, it is not for nothing that they call me a "closer". I start the deal, I carry the deal forward, and I close the deal.
I want 50%. Never mind looking shocked. You get $35K now. I will sell the same product to an upscale Baby Boomer market, for $125K. So I will be giving  you $62,500 for the product that you have been unable to sell for more than $35K.  All the business I bring to you will be unheard-of profitable. You will be doing the same work for almost twice the money. That's why they call me the "salesman's salesman", and it is why Zig Ziglar used to call me up.
And I will not be restricted to a geographical sales territory.  I am going online to seek out the booming cohort of  Boomers.
And if you don't like this deal, that's okay; I've got two other stem  cell scammers in negotiations, and they are both a lot bigger than you.
And my clients sure as hell don't want to have their brain operation in Bangladesh. 

(Cells4Health, also known as Sales4Wealth, advertises for sales agents, right on the front page of their web site.)

(That's talking to the marketing office. It is equally important to mollify the various spiritual dreamers who gather together in hope of finding something to share.) 

One rule of  the road: Do not bite the hand that feeds you addictive brain drugs. ‘Ya gotta’ pamper those guys because they control the supply, and it says right on the pillbox that “sudden withdrawal can cause permanent brain damage or death.”

Why do they say “or” death?  Isn’t it “and/or”?

We can eradicate Parkinson’s from the face of the earth; that would be our gift to the human race for all future generations; it would be the first time that the Nobel Prize would be awarded to a cohort of patients; the beginning of a true revolution in medicine; a turning point in world history. 

Sounds good to me. Honey, pack my bags, I gotta’ go change history for awhile.

I could be their writer, their spastic-in-residence; their “éminence grise”;  their elusive infiltrator, their in-house historian.

I could be as Boswell was to Johnson. 

I could be as Engels was to Marx. 

I could be as Jung was to Freud. 

I could be as Plato was to Socrates.

I could be as Mel Blanc was to Bugs Bunny, Daffy Duck, Porky Pig, Tweety Bird, Sylvester the Cat, Yosemite Sam, Foghorn Leghorn, Marvin the Martian, Pepé Le Pew, Speedy Gonzales, and the Tasmanian Devil.

What can I say? I get around.

I can be very useful where multiple voices are required. 

But who is speaking as Elmer Fudd? (“Kill the wabbit, kill the wabbit”). 

I always wanted to do Elmer Fudd, but it is not permitted by the Committee that watches over me, because Elmer carries a shotgun, to kill the wabbits, and seeing me with a shotgun causes grave concern to the Committee, despite protestation that both Elmer Fudd and the wabbits are cartoon characters and the gun is a cartoon gun.

Who is going to kill the wabbits after I am gone? Wascally wabbits. Elmer only shoots at wascally wabbits, and he always screws up. I fit the part exactly.

I would be their favorite mascot, and they could trot me out in front of the cameras every once in awhile as a perfect example of something or other. I was flattered to be their “Exhibit A”. And flattery will get you everywhere.

They would not only cure my disease, but also grant me this new end-of-life career as a tedious public curmudgeon. I could be a Parkinson’s version of Rush Limbaugh. Maybe I already am. Most people don’t know that we are all actors, pretending to have Parkinson’s Disease, just like MJ Fox. We are all just looking for sympathy and attention. There really is no such disease. We collect massive donations, just by shaking a little bit, and complaining about mysterious aches and pains. It works. SUCKERS!

We can’t wait 10 years. To hell with clinical trials; just shoot me up with your latest drugs and knock me out and drill into my brain, and FIX ME. I left my car at the garage because of the black smoke pouring out of the engine, and I hobbled down the street to the clinic. As a consumer of goods and services, I expect drive-thru service for my body, my soul, my disease, and my Honda Civic. Change the oil, put in a new battery, rotate the tires, empty the ashtray, install a new brain and a tolerable personality. I have no time to waste. Do you take VISA?

They admired my fighting spirit. (Ignorance is bliss: they have never seen me crouching in a corner, rolled into a ball, quivering – a stance that makes me considerably less employable) They asked me to join their Crusade. Hey, why not? Onward, Christian soldiers, marching off to war! (I was that little boy, carrying the Cross on before.)

They needed people like me all over the world, to quietly recruit Parkies, without the FDA or Health Canada or any such archaic national bureaucracy finding out about it; it has to be kept quiet at  first. So Big Pharma and the Doctors’ Associations and the busybodies will not be able to stop us; when we have saved many lives, then we will announce it to the whole world, and we will be unstoppable.

They said that they needed me. And it’s now or never. Do you want to fight Parkinson’s, yes or no? Here’s your vehicle; miss this chance and there’s no way you will get another one; this is the first breakthrough in 60 years. Are you on the bus or off the bus? Can you wait another 60 years? We need you. And we need you now.

Bingo! 

The disease makes you so useless, one of your needs is that you need to be needed. They played with that. And then they played with that some more. They needed me. Which I needed.

Tell me over and over again

Tell me that you need me then

 (Amen)

And you think YOU would not get sucked in like that? Yeah, that’s what I thought too. And then they get your number. You would be astonished at how easily you can be brain-washed when your brain is already pretty much washed out, and you are grasping at straws, and suddenly,  a shining future is delivered to you. 

They find your weaknesses and your strengths, and your hopes and fears, and they play you like a fiddle, and they offer your life back; a whole new beginning for you, for the price of a pick-up truck. 

Hell, you would pay twice that just to be able to walk when you want to walk; you would sell your house just to be able to hold a spoon so you can eat in a restaurant; you would empty out your bank account to make the pain stop; you would travel half-way around the world and give your entire life savings to some quack to drill a hole in your head and inject an untested substance into your brain, just to be “On” another 30 minutes per day;  just to be able to endure “Off” without going mad.

Try me again when the angels are panting

and scratching at the door to get in.

And the crooks intercept you at Robert Johnson’s Crossroads, where they knew you would be, with the acoustic guitar you had hand-made for you in Tarragona, and it turns out they love your music too, and they bring with them a supply of home-brew snake oil – it’ll cure what ails ‘ya damn straight.  

And you want so badly to believe it is true. And so you submit to highway robbery, while singing their praises, as they take you by the hand and lead you into les lendemains qui chantent.

The theft of the money from the wounded and the dying is an outrageous sin and a crime, but it is not the Big Fuss.

The Big Fuss is the destruction of faith, hope and charity, the devastating betrayal, the cold calculations of the reptilian brain, the ethics-free inhumanity of these smart, educated, prosperous, world-wise practitioners of domination over the weak and the sick, destroying easy victims for fun and profit. 

They make their excuses; they say it’s the law of the jungle out there;  and it is not satisfying just to win;  it is more gratifying to win dirty; to do far more harm than necessary to steal what they want to steal. It’s not so much the money they lust for; it’s the power to treat you like a toy, to unbalance  your life and laugh when you fall down, to see the pain in your face when they reveal that you were never no more than a pawn in  their game. 

They have made their own selfishness into a convenient religion, and they can practice up on you because you are an idiot who will follow along at their heels like a puppy dog, in exchange for a few kind words.

You, the patient, you’re the one who buys the Brooklyn Bridge, so don’t blame anybody but yourself.  The fact that you actually believed them is taken by the experts as further proof that you suffer cognitive damage. You bought in to an obvious scam. You idiot. How can someone so smart be so stupid? 

It is not just Jimmy’s friends and family who are looking for asses to kick. People we never heard of send e-mails to our Parkinson’s posse. They say stuff like this:

"…  these doctors are persuading often-desperate patients to pay large sums of money for treatments that have no sustainable evidence to support them, it is cynically exploitative and a disgrace to the practice of medicine."

And this:

“It is also alleged that the Dr Kleinbloesem raised $300,000 to set up a charity to help poorer patients receive treatment free but that the foundation was never actually established… ”

And this:

… He is accused of using patients’ funds and investors’ money to finance his lifestyle. Lawyers acting for investors are accusing Dr Kleinbloesem of “misappropriating monies on a grand scale”.

And this:

“It is not even clear that he and his clinic followed up their patients at all… we asked for any records showing any evidence of patients improving. None have been provided. What happened to 3,600 patients? Did they get better? Did they die? Did they mysteriously all stop speaking? Did they all get camera shy? Or are they shattered, depressed and hopeless? The final loss of innocence.

Parkies of the world, we do not have to put up with this

There are no more slave ships on the high seas.

Parkinson’s taketh from some

and giveth to others.

It’s a Reverse Robin Hood Disease.

Parkies, meet the “Steve Jobs of stem cells”, as he refers  to himself.  Welcome to our stage for the first time: here is (drum roll) Dr. Cornelis Kleinbloesem, with his half million dollar yacht; his $3 million week-end cottage.

Hello?

Dr. Cornelis Kleinbloesem, I presume?

When I look into your eyes I get the chills. You can stop Parkinson’s?  Very pricey and very very dicey?  There’s a guy I know, name of Jimmy Paquin, upstate New York. Seems you or your partners owe him 35 Grand. Seems he paid for what he never got. You left him standing there at a locked door in a foreign country, alone and sick and broke and betrayed, where you were supposed be waiting on him to save his life. You were nowhere to be found, and the money is gone.

Folks out here in the back-woods ain’t done too much book-learnin’, but they know what is right and they know what is wrong. 

They get riled up when they see the filth of the butcher being washed in the blood of the lamb.

Who are you?

I am one of many; the script calls for me to be solemn in the contemplation of evil

I don’t think I know you.

You will never know me, or anyone else; you only see yourself.

You are the loneliest man in the world. Have you seen a shrink about that? It is a horrifying affliction and it only gets worse. I think there’s an island where they all get sent, l’Isle des damnés.

The purpose of this chapter is to scare charlatans and bandits away from vulnerable and isolated  People With Parkinson’s. We don’t need you, we don’t want you. You ain’t no  healer. You should not be allowed anywhere near any Person With Parkinson’s. Go find yourself another toy. Take up a different hobby. Leave us alone. All of you who gamble with our lives to improve their own score-card. Don’t let us catch you lurking around our tribe again. Our people suffer enough without having to endure you.

Are you a journalist? (Alisdair Palmer, journalist in a wheelchair, had spooked them badly, and they saw him hiding behind every bush)
 

God no. What an insult. I am a citizen, and I do volunteer work for The Parkinson`s Underground. I have been previously deployed by them as a waiter in waiting, a silent spokesman, a stationary campaigner, a canary in a coal mine, a messenger boy gone off-topic, a life guard on a hidden beach where there have never been footsteps in the sand. 

I had a life that made sense, sending out messages in bottles, into the sea or rivers that run to the sea.

…and then this famous doctor came up to me and said “I am going to make you an example for all the world”.

What could I possibly say? 

Fame and fortune are on the way.

Mighty Mouse will save the day.

When the sun shines, ‘ya gotta’ make hay.

But I did not have the presence of mind to ask:

“An example of what, exactly?  The biggest fool alive?”

Now,  a Sermon that you should not ignore:

Beware the moral void beyond which the cartographers tell you there is No-Thing; they are deceiving you as you would deceive them. There is no place where there is nothing: where you are heading, there be monsters and dragons; uncharted waters and haunted islands, drenched with all your darkest fears, where martyrs weep, and angels play with sin; where your ghostly victims emerge from their dark caves and surround you, chanting your name; shrieks of pain and howls of anguish and burning anger from deep within; and fear of things that go “boompf” in the night; sleep with one eye open; the next sound you hear might be thunder. There is fear in every handful of dust; the sky will turn blood red, the earth will tremble. Danté’s Inferno will be your address for all Eternity, and you will discover that Eternity is a very long time.

No one gets away with anything. You can break the laws of mere government, but no one gets away with breaking the Laws of God; the Laws of Man, the Laws of the Universe, the Laws of Life Itself, or any combination thereof.

Abolish this disease and we won’t care at all if you are a greedy pig. We are not prejudiced against greedy pigs. Some of our best friends are greedy pigs. Just bring home the bacon, honey.

Maybe you could fight disease, but the way you treated Jimmy reveals that you have other interests. You did not even e-mail him to save him the cost of the useless trip to Europe, and you have not paid him back for the non-treatment. You cared nothing about him, and you have wounded him grievously.You ain't no healer.

You say your treatment works for many diseases? I wish so much for that to be true. But nothing good is likely to come from a place that rips off suffering people.

If you want to live outside the law, you have to be very, very honest. When Jesse James had committed 200 bank robberies, a journalist asked him why he robbed banks. He shrugged and said, “Because that’s where the money is.” He was always completely honest about what he was doing. He has ever since been a hero to all outsiders.

There is honour among us: the outsiders, the trouble-makers, the misfits, the clowns, the merry pranksters, the anachronisms, the deranged. But you, you give mavericks a bad name.

You dishonour us all. 

As if it is overdue for humanity to nuke itself into oblivion, and maybe out of the ashes, Nature will evolve a new species more deserving to live on this beautiful planet.

And calling yourself a “doctor”: who do you think you are fooling? I know doctors, and you are no doctor. That piece of paper on your wall don’t mean a damn thing. No doctor would have inflicted that kind of pain on that kid from South Africa.

Let’s see, your clinic sold 3,600 treatments… 20K to 40K each… more than a hundred million American dollars - - sure beats being a doctor in one of those smelly medical clinics for welfare bums…. There’s Big Bucks to be made in the Parkinson’s Industry.

How did you get this telephone number?

Oracle from Delphi whispered it in my ear. Some of your  ex-friends and associates are becoming nervously talkative. What was that story about the one-year old baby from Romania who died on the operating table of your clinic? Were you injecting or retrieving stem cells from the brain of a baby? I ain’t no doctor but that don’t sound right to me. 

Or was it about the 10 year old boy from Azerbijan who almost died, and no one understood his language. Unproven, untested, undocumented medical procedures, not approved for adults, but tried out on children from less prosperous countries? That don’t sound right to me. 

I don’t want to be given a slightly longer life by something illegally tried out on children. The lines being crossed, the crimes being committed… and for what? For what? WTF do you think you are doing?

And the lady from California – her operation went okay but then she died a couple of days later. Complications, you know. Complications.

Her husband said he had no idea the treatment could possibly be fatal, and if he had known, he would have stopped her from going.

And the kid from South Africa whose Grandma sold her house to pay the clinic; at the age of 10 he has plunged into a depression he may not survive.

 And where are the remaining 3,600 contributors to your stack of silver and gold?

They say you moved your assets to a country with no extradition treaty and no serious banking laws

What is it you want?

I don’t want anything; I have plenty of everything worth having.

(You know what I’m thinking, but vengeance belongs to the Lord).

But what do you want from me?

Sell your Audi and make do with your Porsche, your Mercedes and your Range Rover. Then pay back the $35,000 to Jimmy Paquin. Just flip Jimmy a certified cheque in U.S. dollars from your new head office in Beirut, or your new clinic in Dubai, or your lab services in the U.K., where you are exploiting an obscure loop-hole in the law to do what normally is illegal.

 And after that, stay away from my tribe, and we will stay away from yours.  That’s a good deal you should not turn down. Let’s call it quits right here and now. Repeat after me: “Good-bye.”

Click.

Dial tone.

He hung up.

He did not even say good-bye.

Such a rude man.

Is it because of something I said?

Makes no difference what anybody said.

The reply is silence,

and after the silence, comes rolling thunder.

Meanwhile, back in the U.K.:  Dr Robert Trossel

(Wrong line of work, Mister Trossel.  I ain’t gonna call ya “Doc”.)

Brian Gomes da Costa, (U.K.) made a surprise speech to Dr. Robert Trossel, face to face, in a public assembly:

''You have exploited vulnerable patients and their families. You have given false hope and made unsubstantiated and exaggerated claims to patients suffering from degenerative and devastating illnesses. Your conduct has unquestionably done lasting harm, physically, mentally and financially, to these patients and also to their families and supporters.''

… “your misconduct is fundamentally incompatible with being a doctor… medically unjustifiable, inappropriate and exploitative of vulnerable patients.”

The patients… suffering from "progressive and aggressive" disabling neurological disease, raised thousands of pounds to fund the therapy, in many cases through donations or sponsored events.

You

should be forced out of health care

Find another line of work

Something that does not involve human beings

And especially, something that does not involve

Human beings who need help

Because you bring hell, not help.

Leave us alone.

Find another toy.

Be gone.

6. Steve Steidel (American, MSA Multiple System Atrophy):
“Due to a new development in German law, … we must cancel your appointment until further notice. We will notify you for further updates.”
… XCell Center took advantage of certain legal loopholes …
criminal investigations are underway into the death of an 18-month old boy, and the near death of a ten-year old boy…local public prosecutors are considering criminal charges against an XCell doctor and the company’s management.

As a former stem cell recipient at XCell, I am extremely disappointed with these events and I look forward to the Center's response to the investigation. It appears, however, that the XCell Center may indeed be involved in fraudulent, or at the least, intentionally misleading activities.

What a shame that a score of MSA patients, along with many persons hoping to ease the ravages of other diseases, may have been duped by a group of unscrupulous medical mobsters.

http://msajourney.blogspot.com/2011/05/post-37-xcell-center-forced-to-suspend.html

Post 43 - XCell Resurfaces (sort of)

…I started out very hopeful the treatment might result in a reversal or even a cessation of the symptoms associated with this nasty disease.

As it turned out, the treatment had little, if any, positive impact on my condition... I became more critical of the clinic’s operating methods, especially their patient follow-up procedures, which in my case consisted of one automated Christmas card and one, poorly worded questionnaire asking about my post visit condition. I quickly lost confidence in the accuracy of the survey when I realized that XCell listed me suffering from Multiple Sclerosis rather than MSA. I wrote and corrected them but never received an acknowledgment.

…I thought I had heard the last from them until a few weeks ago when I received an email message from a founder of XCell. He intimated that the problem was just a misunderstanding between the German Health Dept and XCell which would be resolved soon.

Rather than wait for this resolution to take place, this doctor proudly stated the remnants of XCell had joined a clinic in Bangkok, Thailand...

I’ve concluded there must be a fortune to be made in “medical tourism” particularly stem cell therapy. Why else would XCell resurface so quickly in a location where regulations seem lax and medical oversight appears less strict than Europe?

ADDED 3/11/12: I just found the original e-mail, dated Nov 2011, from Dr. C. Kleinbloesem who claimed to be XCell's last CEO and falsely maligned Medical Director...

His "dedication" to the field of stem cell therapy has led him to form a new organization, Cells4Health GmbH which has set up shop in Beirut, Lebanon, where their website: www.cells4health.com looks remarkably like XCell's - right down to the same prices.

I guess the "Business climate" is less restrictive in Lebanon.

http://msajourney.blogspot.com/2011/11/post-43-xcell-resurfaces-sort-of.html

Steve:  You are entirely right, as usual.  You read situations with the vision of an eagle flying high.

Kleinbloesem is Dutch, but Holland  kicked him out and  so he started 2 clinics in Germany – Dusseldorf and Cologne. The German government closed him down and is still considering criminal charges, possibly including manslaughter.

That is when  they all fled to other countries. Kleinbloesem resurfaced with new headquarters in Beirut and a new clinic in Dubai. The government of Dubai held an investigation, and closed him down. So, onwards they went, to Bangkok where anything goes. This is the evil twin of the Doctors Without Borders.

What happened in Bangkok, nobody is telling me, but  the good doctor  suddenly opened a new head office in Switzerland, where the laws of Europa do not apply. AND Kleinbloesem advertises his locations in India, Pakistan, Bangladesh, Nepal, Singapore and the U.S.A

Now, do you think people in Bangladesh are getting these $35,000 treatments?  Of course not. All of  the clinics are for “neuro tourists” and “stem cell tourists”.

And Kleinbloesem is one of the better ones, hiring actual doctors and keeping the floors clean; AND he is a very small player in the Neuro Tourist Industry – there are about 900 clinics set up for neuro tourists - tens of thousands of Americans and Europeans fly in for treatment that is illegal in their own countries AND Kleinbloesem`s prices are very low – for example an operation performed by Kleinbloesem’s gang for $35,000 will cost you $125,000 in a clinic in Mexico that is owned by Texans with entirely fake medical degrees.  Paging Doctor Al Capone. Paging Dr. Al  Capone.

Memo to Dr. Daniel Eklund, of the Stem Tech labs in Ecuador: we noticed that you “reverse” autism, multiple sclerosis, every kind cancer, Parkinson's, cerebral palsy, and Lou Gehrig's disease. Quite the accomplishment, I would say.

All the more remarkable given that your license to practice medicine in the United States was revoked. Some quibbles about incompetence and medical fraud. Nice weather down in Ecuador, they say.

Memo to Dr. Larry Stowe: and Dr. Frank Morales: in Monterrey, Mexico. Hey Larry, when you tell lies at least make the lies plausible. You said you have a medical degree from the University of El Paso in Texas. Well, they have no record of you ever being a student there, but more important, they do not have a school of medicine. Really, Larry. Smarten up. You are an embarrassment to criminals. You should have checked to see if your alma matter does in fact exist.

And you, Frank. Your diploma is from a phony university, a mailbox in the Caribbean where a thousand bucks gets you an official-looking diploma from universities that also do not, in fact, exist. You guys are crooks.

Crooked doctors are bad for the image of honest crooks.  Bank robbers are  trustworthy; crooked doctors, not so much.

Paging Dr. Al Capone. We gonna’ make you an offer you can’t refuse.  Sleep tight; don’t let the bed bugs bite.

 

There is a world-wide wave of organized multi-national medical crime, made possible on a world-wide scale by the internet.

Your local doctors and clinics and hospitals are known quantities; self-regarding and arrogant; sluggish; power-tripping; stuck in out-dated ideologies and narrow concepts about disease and treatment.

But they are part of a community and a history and a gossip network and a chain of command; they can manage any bad apple-isms that might exist given that this barrel is, after all, an apple barrel, and a few bad apples do get rotten from time to time.

But medical malpractice in a community is not anonymous; it fast becomes the talk of the town, all hell breaks loose, and ten different committees do reports on it, half of them saying “I told you so” to the other half; and there is much wailing and breast-beating and gnashing of teeth and  rending of white hospital gowns, and a thick book about procedures and policies is stapled together and everybody kneels down to pray and the Auxiliary has another used book sale. It works.

Nothing much may change, but they are good people devoted to helping others, and we, who have lost our autonomy, and are dependent on their kindness: we send thanks and gratitude.

Screw ups? They happen. Evil? Nowhere in sight. On the contrary, I have witnessed entire flocks of angels in Montreal hospitals.

This chapter is not in opposition to stem cell research.

This chapter is not to denounce pharmaceuticals, nor DBS, nor herbal tea, nor meditation, nor maverick researchers, nor anything that is human. This chapter is about our inability to react when it gets inhuman, when a bad apple gets hold of a barrel of its own, hires other bad apples, and seeks isolated sick people, who fly in and fly out, unknown, from around the world, with no community or legal or national oversight, and no contact with each other. 

If I had the money, and access to the secret list of patients, I would fly all 3,600 of the patients to Dusseldorf and tour the city as an angry mob.  But that’s just my personal vision of having a good time – bring in thousands of angry brain-damaged Parkies to pillage a mid-sized German city - my caregivers won’t let me do that kind of thing anymore. Comfort and indifference is what I call it. What’s so wrong about occasionally setting off a revolution? What’s a poor boy gonna’ do ‘cept be a street-fightin’ man?

Ah, they would just lock us all up in the nuthouse. 

We are the fox walking up to the hounds to befriend them. An easy kill; emotionally vulnerable and insecure, child-like in our needs, yearning for solid reference points because in our world nothing is predictable. I do not know if I will be able to stand up from this chair, even though I just did 5 minutes ago. I can walk half way across a street before finding out that today I can’t walk.

And because we are all bleeding and distressed, we are soon surrounded by frenzied sharks. 

The promotion is done on the internet. There are a billion people online, and soon it will be two billion.  You only need to suck in a few thousand of them to make a hundred million bucks.  Easiest way is to show great loving concern for a cohort of people who are weak, suffering, isolated, cognitively impaired, desperate for something to stop the  degeneration of their ability to function. Easy marks, easy targets….  Use modern sales techniques, offer great promises;

…and then the newfound leaders and saviours are suddenly gone, the bank account emptied out; the doctors skipped town with a hundred million bucks. 

You just got stung, sucker. For you, life or death. For them, more money than anyone imagined. And although you saw warning signs that you were being defrauded, you could not believe it. You kept telling yourself, they would not do that to you. But they did.

Ripping off a spastic is like taking candy from a baby. Offer love and approval to the patient and curse the disease; Add in doubt and uncertainty about the neuro-doc and the pills you are swallowing, or any other competing brand of therapy you had faith in;  increase stress levels by saying too many patients are lined up; hold up high the promise that the cure has arrived, and we are the ones who will prove it to the world.

You will see that many PWP can be brain-washed with surprising ease.

Anyways, Jimmy  goin’ straight to heaven. The ones that broke him  goin’ straight to hell.

But, Mister, don’t darken our lives again, with your schemes and your false promises and your greed. Not all Parkies are as quiet and meek as I am. Some of them get in a Big Fuss from all the frustrations, and we have to get them to chill out. You had best stay away from us, because Mirapex makes us all clinically out-of-control pathologically impulsively compulsive. It says so right on the pill container. Parkies might get rude. Impolite. Inconsiderate. Uncivilized. Monkeys in the Middle.

I will soon stop adding chapters because I am tired and there are too many people who think my phone ex-tension is  911.  And they never let ME drive the ambulance. I used to race amateur stock cars, you know. They could stop being so mean and let me drive sometimes. I love that siren and the flashing lights and one time I saw a Rolls-Royce get out of our way. At the very least, they should let me sit up front to see the action. It’s my disease you know.  I don’t see why other people get to boss me around about my disease.

Parkies get raw and sensitive, as if their skin keeps getting sand-papered.  Because it does. 

That’s why they send me out into your society as spokesman: because I am a level-headed pacifist, always seeking compromise and reconciliation. You are lucky it is me, and not one of the radical Parkies, who all refer to me as “that reactionary neo-con shill for Wall Street”. I have to constantly restrain them from being hasty or rash in their socio-political street fights.  

They stick their thumbs in their ears when I try to tell them about Gandhi. It does not help that they love the taste of pepper spray, after eating a pound of Montreal smoked meat from Schwartz's Deli. The cops can’t figure out what is going on – the more they pepper spray, the bigger the crowd gets. It’s an acquired taste.

We are unanimous that we don’t want to see you lurking around People With Parkinson’s no more, no more, no more. You damaged enough of us already. Your ticket has expired. Make yourself scarce. You are fired. Permanently. Everywhere. For anything involving Parkinson’s. For anything involving people. For anything involving pain. Get out of our lives and be careful not to come back. 

The patients’ patience has run out.

PARKIES OF THE WORLD:

Unite, disperse, infiltrate, communicate.

You don't have to merge, but sometimes you have to act like you did: there are items that are global – the 3 year triage during the induced sinemet shortage being one example. Medical gangsters being another. Lack of back-up supplies of essential drugs being another. The quasi-uselessness of WHO being another. The duplication of research being another.  The refusal to share the results of research between Pharma and academia; between America, Europe, Australia, India and China, being another. Inferior or entirely useless drugs being sold world-wide by internet pharmacies, with no FDA-type quality checks at  all, being another.

 It does not mean you have to create a monster organisation to span the world. All the local or national groups can stay local or national; but there are items where world-wide reaction from Parkies is needed, because the assault on us is world-wide. You go to war with the army you have, not the army you wish you had. Parkies have to defend themselves, ‘cause nobody else can, or wants to bother.

…It has all gone multinational; the research, the falsely induced shortage of sinemet, the roving bands of organised criminals… all gone multinational… by way of the internet. We have been talking about Germany and the U.K., but there are neuro-clinics popping up all around the world … in the Dominican Republic, India, the Ukraine, South America… not for their own people, but for “neuro tourists”. 

The Business of False Hope is very profitable around the world…  and  cruel beyond measure, crushing the human spirit.

…to emphasize this point: the patients, the care-givers, the advocates, the pain,  and the PD organisations are local, rarely national; never world-wide. There is a disconnect. The bad guys move from country to country. The money comes from the websites, chat-rooms, and tele-marketing.  Which can be anywhere in the world. 

Something ain’t right. Y’all best have a look-see when you do that big world Spaz-fest in Montreal next year.

Sinemet is not keeping the sharks away. Does Duodopa have shark repellent in the gel? 

Am I here all alone?  

U decide 4 yrself. If I have not found what u r looking 4, U must find it by yrself.

I am retired.  I did not say retarded.  I said re-tired. Michelin Winter Grip, but I still lose my grip.

The angry young man has long since become the grouchy old man.

A ragged coat hanging on a stick.

But yes, in answer to your question, I do dare to eat a peach. I am downright  foolhardy when it comes to eating peaches.

 

I will fight no more 4ever. It is yr world now. I hope u r satisfied. 

‘Scuse me, don’t get up, I am just passing thru.

Parkies of the world, unite!

Then disperse and infiltrate and communicate.

But any pathway you choose, Carpe the hell out of the Diem. That is far more important than the structure of your system. Let’s get it on.

Inuit:
In the First Stories, in the earliest times, what people wanted to see happen, could be made to happen. What people wanted to be, they could become. Provided first they assemble all of the components of The Word, and that The Word be true, and that they utter The Word openly, and then step down in silence, and be humble again.

1^st voice (solemn): As it was in the beginning, so it shall be in the end.

3^rd voice: (tired): Thousands of years have spoken.

2^nd voice (childish): Will the show still go on tonight, one last time?

1^st voice: There is a path travelled by many. Say one more prayer for my family.  Like a ship without a sail, cast adrift.

3^rd voice: I fight on, fight on; I’m the last matador of Bayonne

1^st voice: Five thousand years of past, now are gone.

This Chapter 49 was brought to you by The Parkinson’s Underground.

They said there were two cures; and so of course I jumped right in; one was Texas Medicine, the other was Railroad Gin; and like a fool I mixed them, and it strangled up my mind, and now people just get crazier, and I have no sense of time.

Assembled by Bob Dawson with foreign and domestic components, notably L. Cohen and J. Bonamassa,  (thank you Ginnie); Fraser &  DeBolt, and a smattering of Dylan. Our policies on plagiarism and copyright are discussed at length in the Dylan chapter, Meanwhile Back at the Ranch, which I think was Chapter 43 at the time. Special THANKS TO ALISDAIR PALMER - that was special  beyond special, and thus  thanks to the Telegraph and maybe the Guardian too but I don't remember. The old-time Brit journalism was a model for the world, and it is great to see some journalists keeping it alive.

Full disclosure: Bob Dawson  b.1949, DX 2004; living on sinemet, Mirapex, seligilene, Quetiapine. Citalopram, breathing, sounding, cutting down trees with a chain saw because it takes 35 face cords to heat the old farmhouse. Do not try this when "Off".

 

Carpe the hell out of the Diem.  Let`s get it on!

P.S. Jimmy Paquin got his $35,000 back.
Thank you, Parkinson's Underground.