Samples of correspondence from the archives, circa 2004 – 2009
And, The Mysterious Anuket sings for us
so don’t miss that if you know what is good for you.
Surprise guest: Dr. Daniel Levitin
author of “Your Brain on Music” and “The World in Six Songs”.
This website was named in defiance of him.
He said we can't dance. Well, we sure showed him, eh?
Warning: This chapter is not like the other chapters. This chapter is harsh. Stop reading it if it is not good for you. (But there is one kind thing I ask of you. Please try to read it all, and then listen to Anuket sing. You have to read the story to know why we needed Anuket to sing. It would be kind of you to listen. Some things are happening, and silence is not now the answer.)
There is a time to laugh, there is a time to dance, there is a time to weep… and there is a time for anger.
As with any huge multinational NGO, the Parkinson’s Underground Internet Conspiracy is burdened by bureaucracy, saddled with mediocrity, riddled with internal dissent, shaken by periodic power struggles, cowering under the heavy-handed authoritarian rule of the leader. Fortunately, Bob Dawson is on shore leave this month. When the cat’s away…
And he accidentally left behind the keys for the archive room, where no one has ever been allowed to enter.
Brushing off cobwebs and dust, unlocking the rows and rows of filing cabinets, we found countless folders of letters and printed e-mails in alphabetical order; and so far we’ve only reached the first letter of the alphabet: Amgen, Andy, Anuket. The “A” files are labelled “unconstitutional”, and “not for publication” because the Constitution of the organisation requires us to focus on beauty and dancing and the magnificence of the universe, and unity in fighting Parkinson’s. But, what the President never told us – and he is the only one who has a copy of the Constitution, which he wrote himself, – is that there is a “notwithstanding clause”, as there always is in Canada. It says that notwithstanding the Prime Directive, the suppressed documents may be released in case of a clear and present danger, notwithstanding any form of sanity check.
There are also “Notes to the file”, explanatory notes to guide archaeologists who dig up the site a few thousand years from now, and who would wonder what possible explanation there could be.
We got this e-mail, after Chapter 13:
“How happy would i be if i could still dance? unspeakably. i can't. can't even tap my foot at a steady rhythm. very sad.”
Mysterious Anuket, forgive us our trespasses.
I am so sorry; I did not intend that our focus on music and dancing would make anybody feel bad.
Anuket, I hope I am not causing you more grief. Hit the delete button!
Or can you put music on loud and sort of dance to it in your head, or dream along with it? Is there any sense in sort of dancing while actually seated in a chair? Turn the music up loud and be carried away with it? Is it really necessary to actually dance in order to dance? (my deep thought of the day).
Note to file: Anuket was in an earlier wave of diagnosis, so we learned a lot from her; she was fighting long before we knew there was a fight. She was the only one of us writing scientific critiques on the Internet, in support of Parkinson’s people; she was always our fierce defender against scientists and lawyers whose language the rest of us don’t always understand. And she brought back the old tradition of writing letters to people and sending them in the mail. We all quickly found out that usually we get no answer, or sometimes we get legal letters in reply. But we write letters anyway. The Mysterious Anuket appears to live in the United States, which is all we know about her. Since 2004 or perhaps longer, Anuket has been calling for accountability on the part of Parkinson’s researchers.
*Is* dopamine agonist therapy associated with pathological gambling?
Well, folks, I finally have corroboration from a doctor, published in a peer-reviewed journal for my assertion that none of the gambling studies to date (which means as of 2007, or early 2008 at the latest), demonstrates the extent of risk of development of pathological gambling when taking dopaminergic meds. Dr. Zand says:
"Thus far, published reports have been able to neither demonstrate the extent of risk for gambling-related problems nor study the correlation of dosage with this potential adverse effect among Parkinson’s disease patients treated with dopaminergic medications."
My absolute favourite bit is this, with reference to the 2005 study by Dodd, et. al.:
"This report, however, did not include the total number of patients exposed to pramipexole, ropinirole or other dopamine agonist agents, so the incidence of pathological gambling could not be estimated."
Which is exactly what i said in my May, 5, 2008 blog entry Pathological Gambling Caused by Drugs Used to Treat Parkinson’s Disease: Yet Another Closer Look, Part Two, albeit not nearly so concisely.
I wonder why the approval of Anuket’s paper did not get any press whatsoever? The other side was publicized around the world.
Anuket: 'course i never could dance in a couples-dancing, i.e., non-improvisational way - was only ever any good when i was free to move as my spirit willed - which is not to say i was engaging in some abstract-ish modern dance-ish freeform, sans rhythm-ish wriggling. my dancing was nothing if not rhythmic... in fact, i might almost say that rhythm was my partner - it was with the rhythm that i danced.
can't do that anymore.
Bob: Anuket, put on some loud music anyway! As you say, you danced free-form, moving as your spirit willed; that is what I do too; and I mostly listen to the Blues. The Tango enters into it now because it is easier for the scientists to measure and judge and compare. Me dancing, they would not be quite sure whether or not I am making all those movements on purpose. Like, is he dancing or is he twitching ?
Note to file: A 70-year-old woman in the waiting room of a hospital in Montréal talked about the Amgen fiasco, and she said “it was the day when they decided to kill the monkeys and send the Parkinson’s patients home to die.”
It’s quite an uphill battle to overcome that kind of legacy.
Note to file: When you are told you have Parkinson’s, you don’t know what that means. There are books, there’s the Internet. But mostly, there are other People With Parkinson’s, even if just in the waiting room of the neurologist. And the ones who have had Parkinson’s for a long time tell stories to the newbies. Urban legends, oral traditions, tragic stories, advice on what to eat, dangerous home remedies, outbursts of open enthusiasm, and then comes the Litmus Test.
The story of the Amgen GDNF experiments. (GDNF stands for Glial Derived Neurotrophic Growth Factor. The name tells you it is something you are too stupid to understand).
The GDNF fiasco shattered the worldview of Parkinson’s patients, and created suspicion, anger, and distrust, which echoes and spreads year by year; for example, the billions of dollars of lawsuits going on right now -- -- cynical lawsuits, not aimed at Amgen, but made popular among People With Parkinson’s by the cynicism ignited by Amgen.
And if you are a doctor or nurse or a caregiver or someone in a Parkinson’s Association, or even if you are just a member of “the general population”, (who seem to pop up in every study of Parkinson’s), People With Parkinson’s will judge you by your reaction to the Amgen controversy. For us, there is no controversy. What was done to the Parkinson’s volunteers was WRONG.
That is the litmus test.
It roars to me,
about how much they had been given back
and it wails with lament
at how much they have lost again.
Anuket’s Crusade: The Amgen drug disaster, tragic for many of the people who received it. I don't know the details of how many improved and how much, but I do know that for the last 40 years, people with Parkinson's have swallowed a drug that is barely better than the disease itself, without sending up a concerted demand for something better, so the fact that people who received this compound actually demanded, loudly, clearly, as many voices in the media and as a few, focused voices in court, that it be given back to them doesn't just speak, it roars to me about how much they had been given back, and it wails with lament at how much they have lost again.
The ongoing tragedy is that time is of the essence for people with PD, and I have no idea how much more time is likely to elapse before anything becomes available… My heart goes out to all the other people who were hurt by this. To me, this underlines the need for a person with PD, or an entity comprised of people with PD, who have achieved a level of respect and have somehow demonstrated that their unique perspective actually has value to the various players in the research landscape to the degree that they, those players, are not just compelled to listen but actually realize it is in their best interest to listen to the people they have devoted their lives to helping. A person or entity like that would have and should have had a place a the table in conversations with and about Amgen.
The story as it is usually told among People With Parkinson’s is roughly as follows. Not all the details are right and some details are missing – this is a story passed down to us in conversations, not a scientific study -- but the core of the story is true:
48 seriously ill Parkinson’s patients volunteered for a dangerous and frightening medical experiment to be conducted for and by Amgen, a $15 billion per year bio-med company.
Hoping to find a cure, for themselves, for all mankind, in full knowledge that they might not survive, they volunteered to be subjected to this:
They were hospitalized, their hair shaved off, and electric drills made holes in their skulls, holes the size of quarters. Then plastic tubes were pushed into their brains, and the tubes were bolted to their skulls with stainless steel screws. Then, surgeons cut open their abdomens and implanted two battery-powered metallic pumps, each about the size of a hockey puck, in the abdomen near the stomach. Then, once a month for 3 or 4 years, a new drug was injected through the skin and into the abdomen to replenish the pumps.
There is a YouTube showing symptoms before and after. Obvious a spectacular improvement in their Parkinson’s symptoms, for some, not all, the patients.
And their doctors and care-givers witnessed the obvious, wonderful transformations. A farmer who was bedridden went out and drove his tractor again, back into farming. A man who could not stand up from sitting on a chair and never went outside anymore, decided to walk two miles a day. One man had an 80% improvement on all the neuro-tests. Others, who had been declining 20% per year, now improved 30% per year. One, who could barely walk, now played golf.
There were others, who apparently did not benefit from the treatment – but that is par for the course. Many treatments, many drugs, for any disease, are useful for only about a third of the people who take them. But saving a third is better than saving none, in the severe reality of triage.
Then, from one day to the next, with no warning, with no discussions with any of the volunteers. Amgen cancelled production of the drug and ordered surgeons to slice open the patients again, retrieve the pumps from their stomachs, rip out the tubes in their brains, sew them up a bit, and tell them to take a taxi home and not come back.
One vice-president of Amgen said, in writing, that they simply could not make a profit on this drug. A truthful man - rare in this story.
A “bio-ethicist was employed by the company” (hahahaha! Comedy gold!) and he said it was perfectly legit to cut off the drug supply from some old farts who would probably have croaked by now anyway and who, besides, had signed consent forms.
A spokesman for the company said that the drug was not providing any benefits for the People With Parkinson’s. That was a lie. Watch the video, read the book “Monkeys in the Middle”, by Nick Nelson.
Monkeys in the middle speak:
“I was now able to get out of bed in the morning and stand and walk. Whereas for so long I had to roll out of bed onto the floor and crawl to the kitchen.”
”...again, pain is my constant companion...we are at your mercy…”
“I’m on the floor writhing in pain, which is where I’ve been since the effects of GDNF have worn off. The downhill slide has resumed.”
”My father was so bad off before GDNF that I had to undress him and literally put him into bed....leaving him there, immobile......GDNF has been so successful that my family and I were so looking forward to its continued progress. “
Bob Green’s daughter, Janette
“On GDNF....my speech was much improved. People I hadn’t seen for months commented on it without knowing anything about the GDNF study.”
“Couldn’t these few patients be given GDNF if they signed waivers exempting Amgen from all responsibility if something “bad” happened as a result of the drug?”
Bob Suthers wife, Elaine
“My feeling well periods were slowly lengthening…I was also falling over less often.”
“How do I get Amgen to change their mind and let me decide for myself?”
“…After the post-op stroke, Dad's Parkinson’s symptoms were far worse then they had ever been before, something we never could have imagined happening….GDNF became Dad’s only hope…”
Bob Suthers' daughter, Kristen
“Instead of people looking at me as if I were drunk, they thankfully don't look at all! The relief provided by GDNF is wonderful!”
“GDNF had a major effect on my life in many ways. It eliminated or reduced numerous symptoms of PD allowing me a better quality of life. It enabled me to walk better by reducing dystonia; talk better and be more articulate; smile properly and laugh again; smell once more; be more dextrous; reduce rigidity and reduce my levodopa requirements significantly. Most of all it helped me regain self-confidence for the future.”
The company knew the drug had worked. Eight days after ripping the pumps and tubes out, saying the drug did no good, Amgen applied for – and was granted – a patent to produce the same drug in a different format. They are now trying to sell the patent to their competitors. They knew the drug worked. Perhaps not well enough to make money. But well enough that it gave life back to some of the volunteers.
The delivery system was too complicated. A company memo said that this pump-in-the-stomach method would require too many surgeons. True, the delivery system by pumps is pure desperation, and not very marketable, but they could have let the volunteers continue to survive that way while waiting for the new format. It was cheaper to unplug them – when the new format is ready, they can test it on a new group of monkeys and Parkies.
A spokesman for the company said the improvement of the People With Parkinson’s was due to the “placebo effect” (People With Parkinson’s get that all the time, for every treatment- including music and dancing – it is just a placebo effect). But one man who took the drug for 3 years improved 80% on all their tests. To pretend that this is a placebo effect is science fraud which should have resulted in the firing of all of the managers and researchers involved.
The researchers did tests such as making the patient count backwards from 100, by 7’s: 100, 93, 86, etc. And touch two points on a table as fast as you can. Moronic activities dumbed down for the spastics and the ‘tards. If you did not improve on those bizarre and unnatural tests, they said “no improvement”. But they did not take into account that, for example, one man who never went out of the house because he was always falling down, now took a walk, alone, two miles every day. But he did not improve in counting backwards from 100, so the scientists said he had not improved.
The autopsy of one volunteer showed that his brain cells had in fact been re-generating themselves with the drug.
A spokesman for the company said that they had to stop giving these people the drugs because the monkeys were getting brain lesions from it. This was another type of lie - revealing some information and hiding the rest, another form of fraud. They left out this little detail: the monkeys were being given fifteen times higher dose of the drugs than the human beings, even though the monkeys have much smaller brains.
A spokesman for the company said that some of the volunteers were getting toxins in the brain. Tell me about it. The latest variation of levodopa is advertised as reducing vomiting by 50%. But the drug still causes serious damage to neuro-functioning, dyskinesia, which is often worse than the disease itself. We pour brain-altering drugs into a section of the brain where 90% of the brain cells are already dead, and we think it is like aspirin? So the new drug produces toxins? Oh, wow, I’m really scared. Maybe better to get an electric drill and drill some holes in my head. Non-toxic.
The doctors who had supervised the entire project publicly announced their disagreement with the company that employed them, and asked that the volunteers who had risked their lives be given a continuing supply of the drug, for humanitarian reasons. This, as far as I can find out, was unprecedented in the history of clinical trials. It had never happened before that the medical personnel in a clinical experiment denounced the treatment of the human guinea pigs in their experiment.
The U.S. Government, through the National Institutes of Health, and the Food and Drug Administration, instructed Amgen that it should continue to provide the drug to the volunteers, as a humanitarian gesture to the volunteers and their families. The company refused, saying “So sue us.”
The Parkinson’s volunteers went to court, begging for just enough drugs for themselves, to see them through. The daughter of one of the victims of this crime, said that it is as if they had taken her father out and shot him. He was half-dead, they revived him and brought him back to life, and the whole family was filled with hope and joy. And then they sent him away to die.
But two levels of courts revealed a surprise – the pharmaceutical company had no legal connection to the human beings it used for its experiments. The contracts were between the company and the researchers, and then between the researchers and the human guinea pigs. Amgen had no legal connection whatsoever with the human beings it used for medical experiments.
The decision to pull the plug and let the People With Parkinson’s slide quickly back into pain and paralysis and despair -- the decision to betray the 48 People With Parkinson’s who volunteered to risk their lives in a gruesome experiment to fight a horrid disease -- that decision was made without the presence or participation of the volunteers or anyone who has Parkinson’s Disease. Through the whole process, the patients had no knowledge or input about what was being decided. They thought they were part of something, but they were not; they were just pawns on a chessboard.
No doubt, there were reasons; there are always reasons, always pros and cons.
But when you do what was done to these volunteers, none of the reasons matter. You could have 500 reasons. Still wrong. No matter how many “bio-ethics experts” you hire, no matter what the reasons or justifications, what was done to those Parkinson’s volunteers, was WRONG.
There may have been good reasons to delay putting this drug onto the open market. It is hard to tell because of the murky, secretive, Byzantine way that Parkinson's research functions. Most Parkinson's researchers will not share information with other Parkinson's researchers, and most certainly the information is not available to people who are merely going to die of the disease and who have no impact on the stock market prices.
But to pull the plug on those who had been given their lives back by the drug, that was wrong, and the effects of that wrong echo on and on; it is a defining moment for Parkinson’s patients around the world: it is there that we found out what we are worth, where we belong, and who really does not care. We learned to take a second look at those who knock on the door and say they came to help us, or who promise that self-sacrifice will not be in vain. We learned that a contract we sign with the researcher may be completely negated by another contract we do not see – between the researcher and the company. And the corporate lawyers had envisioned the entire scenario from the very beginning, and they set up the contracts so that the company would make huge profits if the drug worked, but deny all responsibility if the volunteers have their lives shattered. While the corporate marketing department tells the public that the corporate mission statement is all about teamwork to better human lives.
The day they killed the monkeys and sent the spastics home to die, Amgen’s share price went up. The market already knew that the stomach pump – brain tube system would not look good to marketing focus groups; and that the company, within eight days, would apply for a patent on the same drug in a different format, a much more popular and profitable format. The stock price went up when the People With Parkinson’s were thrown overboard.
If I see someone drowning in the lake, and I rescue them and drag them to shore and save their lives, and then do some experiments on their bodies and then when my experiments are over, I throw them back in the lake, knowing that they will drown… Is that okay for me to do, because if I had not pulled them out of the lake, they would have drowned right away?
Parkies could be brought in to test all manner of drugs and fire-proofing and car crashes. Just tell them it is for the good of mankind. (Laughter all around, cigars lit).
IN THE HISTORY OF PARKINSON’S PATIENTS, THAT WAS THE DAY THE TRUST DIED
Parkinson’s patients, since then, have launched hundreds of lawsuits against the pharmaceutical industry for billions of dollars for any side effect that they can find. Why not sue the pants off any damn pharma company for any reason, purely in revenge for the savage atrocity some of them inflicted on some of us. If 48 of us are in cages, none of us are free.
The whole Amgen fiasco is a prime example of the fatal dysfunctionality of the “war against Parkinson’s”. The images of what was done to the Parkinson’s volunteers are seared into our brains and into our memories, and it severely affects our situation in society.
That’s the litmus test. The story goes around from patient to patient. What was done was WRONG. The most primitive tribesman staggering out of the jungle would tell you that it was WRONG. If the business managers and researchers and drug marketers think that it was all routine, that it was acceptable, if they do not see that it was WRONG, they should not be allowed anywhere near Parkinson’s patients or Parkinson’s research. They should be transferred to the division that makes underarm deodorant and toilet cleanser. We don’t need them, we don’t want them; we don’t trust them; we won’t tolerate them; we would rather die, like an animal, in the forest. They may give us months or even years of better life; but it is not worth it, when at the start the volunteers hope for a cure, and at the end they find out that they were just pawns on a chess-board; the volunteers were dishonoured; their sacrifice was not only useless, it was humiliating; they thought they were contributing their living bodies with courage and generosity to help the human race; and they found out that they were suckers, they were dupes, they were used, they were played with, they were lied to, and they had no more value to the Parkinson’s research business than the lab rats that are killed with gas when the experiment is deemed to be unprofitable.
That was the end of the war against Parkinson’s, if in fact there ever was one. Now it is distrust and acrimony and lawsuits and lies and anything goes; and the “general population” hears that People With Parkinson’s are unable to control their actions and are unemployable. That’s what happens when you shatter a cup - it is very difficult to rebuild and fill it up. You don’t tell the lab rats about how the story is going to end, when you feed them treats to get them to run through the maze you built for them. You entice them with hope and promises, you keep them alive as long as you need them, and then the face of the Beast is revealed. It was never for them, it was never about them, it was never a team effort with them. Marketing ran it up a flagpole and only a few old spastics saluted. Finance crossed out the line item in the Q4 budget and the stock price went up. Year-end bonuses all around.
How about a class action suit to remove the $200 million a year in taxpayer’s money that is spent in futile repetition of failed PD research? Give the money to People With Parkinson’s so at least we can afford a huge party in Vegas. Cure me or kill me but don’t lie to me. Don’t make me an idiot, a sucker, a fool, for believing that it would be brave to offer up my living body as a weapon of the war, and then having to tell my children that there was no war, there was competition for market share and Coke beat Pepsi, and when Pepsi lost, they gassed their lab rats. No hero medal for me; just another foot soldier used as cannon fodder in a futile fusillade. We were naïve, we followed the Pied Piper like children – having forgotten that the Pied Piper was first hired to entice the rats.
Excerpt from Anuket’s Crusade;
Levodopa – if this is the “gold standard,” we are in trouble
A description of dyskinesia, a side effect of levodopa: (This is not caused by the disease, it is caused by the drug they give us for the disease!)
At approximately 7:30 PM [each evening], he began to have violent flinging movements of the arms and legs and facial grimacing interrupted by severe dystonic spasms of the right limbs. He could only attempt to lie down but would flail his entire body from side to side and could not remain in bed due to the violence of the movements. These severe dyskinesias lasted until 11 PM or midnight, every evening.
- McColl et al., Movement Disorders, 2002
One Parkinson’s patient was in such motion that she was unable to simply pick up a glass and drink from it. Instead, she requested a straw, which allowed her to sip from it while leaving it on the table. I have spoken to people on the phone whose movements were so vigorous that I could hear the difficulty they were having keeping the handset positioned correctly. I spoke to one woman on the phone who said she was lying on the floor because her bodily movements were so violent that she could neither stand nor sit; I could barely hear her over the noise of the handset being knocked around. I witnessed a man whose involuntary writhing was so intense that he could barely keep from sliding off his chair onto the floor. At a fundraising dinner one night, I saw a woman whose head was flinging back and forth so wildly it was a miracle she didn’t smash it on the table.
- Anuket’s own observations
And here’s the kicker; according to Shaw, et. al.:
“[Levodopa-induced] movements were most severe when the patient was obtaining maximal relief from rigidity and akinesia…”
Excellent! Not only was there only a mere 20% chance of still deriving, at best, moderate benefit from levodopa at the six-year mark, and not only was there about a 100% chance that one would be dealing with dyskinesias, but the moderate benefit would come when the dyskinesias were the worst. Oh, and let’s not forget the dangers of dementia and wearing off.
Given the above, I have to say that I don’t quite get it when Shaw, et. al. say:
“Despite the unquestionable diminution of responsiveness to levodopa over the years and associated long-term adverse reactions, the quality of life for the average patient treated with levodopa has clearly improved considerably. For two to three years the majority do well, many patients remain gainfully employed and lead active lives for several more years and even after six years most are still gaining benefit.”
Most didn’t even make it to the six year mark! 35% dropped out by the second year! Only 45% actually finished the study and only 20% finished the study at a moderate level of benefit, and that was being compromised by concomitant dyskinesias! And that was the best case scenario – the rest of as the people who finished the study were experiencing slight to zero benefit but were almost certainly experiencing the joys of dyskinesias and wearing off, and if they got really lucky, dementia, too!
Unfortunately, such compartmentalization of the benefits and deficits of levodopa is standard. In cases in which a side effect may be troubling (i.e., dry mouth) but not interfere with the actual benefit being derived from the drug (e.g., the ability to move, and thereby accomplish tasks requiring movement, e.g., picking up and drinking from a glass of water), it might not be misleading to compartmentalize the benefit and present it as separate and distinct from the deficit. However, when the benefit itself is compromised by the side effect, it does become misleading to present them as separate and unrelated, as is almost always done.
Levodopa may be better than nothing – I do not have enough information to comment on that designation – but to call it “the gold standard,” as has been done for many years, conveys the profoundly inaccurate impression that this drug is better than good enough by cavalierly disregarding side effects of such severity and impact that in any other field of medicine would be considered evidence of toxicity.
Excerpt from Anuket’s Crusade
Levodopa – if this is the "gold standard," we’re in trouble - Part II
In short, that the last 40 years of research developing different iterations of levodopa were not geared toward improving on its strengths is evident in the incessant singing of its praises (and, since 1996 or so, its donning of the “gold standard” mantle). Rather, the last 40 years of levodopa-centricity have been focused on fixing all the things that are wrong with it.
And, in a nutshell, with respect to levodopa’s deficits, here is my assessment of what has been accomplished since 1970:
The transition from levodopa to Sinemet resulted in a 52% reduction in the incidence of nausea/vomiting, a 60% increase in the incidence of dyskinesias, and had no impact on wearing off or on/off fluctuations.
The transition from Sinemet to Sinemet CR resulted in no improvement in on/off fluctuations, a reduction in the frequency of dosing per day, and a 35% increase in the incidence of dyskinesias.
The transition from Sinemet CR to Stalevo resulted in – if you average the numbers from each of the clinical trials listed in the package insert – about 51 additional minutes of on time per day. It also resulted in a 75% higher incidence of dyskinesias, and that was only after six months.
So for the super duper summary, after 40 years of effort and untold amounts of money wasted trying to put bandaids on this shameful excuse for a “therapy,” the only real improvements that have been achieved are:
- a halving of the incidence of nausea/vomiting
- a reduction in the number of times one has to take medication every day
- and less than an hour of additional on time per day
The four-fold increase in the incidence of dyskinesias pretty much wipes all of them out.
So – you tell me – has the Parkinson’s disease research community’s obsession with fixing levodopa paid off?
If you REALLY wanted to make a difference in people's lives, you might try drawing attention to the fact that this drug has dominated the field of Parkinson's therapies for 36 years - this is a drug that causes a side effect that, when it occurs in the absence of a causal drug, is evidence of neurological disease (Huntington's chorea).
Every single one of the big companies that makes a levodopa product, which causes a plethora of frequently disabling side effects, either makes, or has a generic arm that makes, or is affiliated in some way with a company or companies that make the myriad other drugs that are billed as fixing the problems levodopa causes - pretty neat set up, eh? Sell something that screws people up, then sell them something, and something else, and yet something else, telling them each time that adding THIS drug to the 47 other pills you take every day will surely fix the problem.
Levodopa is generic, you see, so lots of companies rely on that income stream, and the bigger ones have expanded their markets using the means described above – and while current income streams are important, potential for future growth is as, or more, important –and as long as no one breaks the unwritten rule and invents a drug that actually works for Parkinson’s, industry can happily just go on churning out adjunct after adjunct after adjunct – levodopa offers industry infinite potential for growth.
A drug that actually worked would destroy all of that. Levodopa has been touted as “the best we have” for 36 years – the best for whom is the question, and the answer is obvious.
Bob: Truth in packaging: Andrew S. Grove is NOT a card-carrying member of the Parkinson’s Underground Internet Conspiracy. But he is a Fellow Traveller. I have plagiarised his words. If he sues me, I can tell the court that Mirapex made me addicted to words and I cannot control my own actions. Andy Grove built one of the greatest research and development projects in history: Co-founder of Intel (does your computer say “Intel Inside”?) The co-creator of what became one of the 5 most valuable companies in the world. All based on research and development. He has Parkinson’s. He has Parkinson’s real bad, and has given $62 million to Parkinson’s research. Grove spent 35 years building a company that depended entirely on its ability to develop a newer, faster version of its previous product every year. During the time he drove research at Intel, the number of transistors on a chip went from about 1,000 to 10 billion. Over that same period, the standard treatment for Parkinson’s disease went from levodopa to …. levodopa.
"In my experience people who are getting a chip ready for production are absolutely absorbed in it and driven to meet the deadline." Medical researchers, in his view, lack an urgency to translate basic research into practical tools. The NIH spends $200 million a year on Parkinson's research. Yet the mainstay drug, levodopa, which stimulates the brain to produce more dopamine, is 40 years old and provides only symptomatic relief.
In 2001 Grove and a doctor friend at Stanford University sent a letter to NIH director Elias Zerhouni with advice on how to organize NIH research grants around different diseases, including Parkinson's. "I put my heart and soul into that letter and got no answer," says Grove. “They did not even acknowledge receipt of my proposal.” It was around then he began to get angry about the lack of urgency in Parkinson's research.
Bob: Anuket was ignored; Grove was ignored. One of the great researchers of all time, wanting to assist in dragging Parkinson’s medical research out of its primitive Spanish Inquisition stage, willing to put tens of millions of dollars of his own money into the reformation of Parkinson’s research, and they did not even answer his letter. Well, Grove and Anuket both have Parkinson’s. Why should the medical industry listen to them?
Bob: Uh-oh. Is there an Egyptologist in the house? I just found out that Anuket is the name of an Egyptian Goddess; She Who Embraces, with her crown of ostrich feathers and river reeds, with her pet gazelle; some see visions in which she is the personification of the waters of the Nile River, the nourisher of the fields, from the Nubian tribe at the head-waters of the mighty river. This website, because of its theme, opened up old memories and present realities and wounded her.
Uh, I have not done anything here to trigger some ancient legend, I hope. A sand-storm, the Nile River overflowing, the doors to an underground city open, strange creatures climb out of the sand to avenge her sadness… I think I need another hit of Mirapex.
Bob: The first Parkie “victim” to get through the court system in the Mirapex gambling scam was awarded $8,000,000. The stampede is on. Hundreds more lawsuits have been launched. They are seeking damages in the billions dollars.
- discussed in Chapters 8 and 8.5.
"The human body is a lot more complex than silicon," (well, d’uh!) said a professor of biomedical engineering and radiology at Columbia University after Grove's speech. Derek Lowe, a veteran pharma researcher with a Ph.D. in organic chemistry, called Andrew Grove "Rich, Famous, Smart and Wrong".
Bob: The message sent to Parkinson’s patients has been consistent since levodopa became one of the most profitable drugs on earth in the 1960’s. Shut your mouth, take your pill, sit in the chair, and stare at the wall. Someone will come around to spoon-feed you at 6.
Anuket received nothing but unabashedly condescending run-arounds, followed by deafening silence, when she criticised Parkinson’s research.
Andy Grove received, first silence, then contempt.
We get the message. But we won’t STFU.
"You can't go close to this and not get angry," says Grove. "There are so many people working so hard and achieving so little."
Grove roundly criticized research funding at the National Institutes of Health, the unwillingness of researchers to share data and the lack of urgency in translating basic science into treatments that can help people. "What is needed is a cultural revolution that values curiosity, follow-through and a problem-solving orientation and also puts the data being generated in full view, scrutinizable by all.”
Bob said: Anuket, - I do not know who you are or what part of the world you are in - . If my writing brings you grief and sadness, dismiss it from your mind. I am just a Baby Boomer cliché – into the Blues and whiskey – in a very cold and dark winter in Canada. The wind chill was minus 30 Celsius a couple of days ago. We avoid cabin fever by sending out e-mails, to prove that we are still here.
Anuket drives a truck through holes in the research
Pathological gambling associated with dopamine agonist therapy in Parkinson’s disease - A Closer Look
As I will say again later, if any of the authors would like to educate me on the validity of their claim, I am all ears. I have tried going to the mountain, i.e., I have emailed the lead author asking for clarification. He chose not to respond. I have invited each of the authors of this study to read this post and asked for their feedback, input, and corrections – maybe the mountain will come to me.
“GIVEN THE COMPLEX WORLD OF THE PATIENT WITH PD — dopaminergic therapy, chronic illness, and casino availability…”
And so we come to the 2003 study’s conclusion, from which the above headline is a direct quote, believe it or not.
Less comical but equally disturbing is the authors’ closing statement, in which they say that in most of the cases described in the study, excessive gambling appeared to resolve with a dosage reduction. Of the nine cases detailed in the article, however, only one is listed as having resolved with a reduction in dose. Six switched to another DA, an inconsistency that is compounded when one considers that the entire thrust of the study appears to hold DAs in general responsible for the PG.
The assertion that encapsulates the meaninglessness of this study as a whole, however, is this one: "...these subjects illustrate that excessive gambling may occur in advancing PD," a statement that sounds like it is saying something relevant, but actually says nothing at all, given that excessive gambling "may occur" at any time, under any circumstance, and it could happen to anyone.
I could go on, but I probably don’t need to.
Suffice it to say that if each of the component parts of the authors’ central assertion is examined more closely than the average journal reviewer apparently would, and certainly more closely than any of the journalists who swallowed this story hook, line and sinker ever would, the whole premise falls apart. First, there are enough inconsistencies in the transition from eight patients in 2000 to nine patients in 2003 to raise questions about the legitimacy of that change. Second, it is abundantly clear that the authors fail to identify key criteria, namely how they are defining pathological gambling and what standard or standards of measure they are using to identify the presence of an association – it couldn’t be statistical significance because a) there is none, and b) the sample size is most likely too small to draw any conclusions; it can’t be temporal coincidence because a) they do not define what length of time qualifies as temporally significant, and b) they include two people for whom they provide zero temporal information, thereby pretty much knocking that out as a potential measure of association. Finally, even their characterization of the drug regimen they say is responsible is inaccurate.
It seems clear to me that the authors fail to support their assertion that they have found an association between DAs and PG. If any of the authors disagree, I would welcome their feedback – I am not interested in thinking I am right when I am not. I am interested in the truth, and in accountability on the parts of researchers, institutions and journals to the people whose lives are going to be affected by what they publish and what they publicize.
Bob: Anuket, are you okay? You fight the science war for us; we go dancing and leave you behind in pain.
First, do no harm, they say; herein, our intentions were good and yet we did harm. We glorified dance, and we danced for hours, and we said we hope our dancing can fight the disease, and we went joyously dancing late into the night, and watching us, from a distance, was Anuket, left behind, unable to dance, excluded from our miracle by its very definition. We said dance. Anuket cannot dance. She can not even tap her foot.
Anuket: You never have to worry about hurting me by talking about dancing. The pain of that loss has abated, first of all, and secondly the reality of it is with me in every move i make, every day, as is, i imagine, the loss of anything you can no longer do. It is impossible to hide from these losses - one can only minimize them by whatever means one can, and adapt.
Note to file: Andy Grove believes there is something deeply wrong with the the pharmaceutical industry, the National Institutes of Health and academic biomed world. Like an increasing number of critics who are fed up with biomedical research that lets paralyzed rats (but not people) walk again, that cures mouse (but not human) cancer and that lifts the fog of the rodent version of Alzheimer's but not people's, he is taking aim at what more and more critics see as a broken system.
He challenges big pharma companies, many of which haven't had an important new compound approved in ages, and academic researchers who are content with getting NIH grants and publishing research papers with little regard to whether their work leads to something that can alleviate disease, to change their ways.
Anuket sends a letter to the FDA regarding research misconduct
…Just to put this in context, in the six years Mirapex was on the market prior to the publicizing of Stacy’s 2003 study, there was one report concerning it and gambling (there were three such reports for levodopa-carbidopa, the “’gold standard” of Parkinson’s therapies, during the same time period), and in the year and a half after the publicizing of Stacy’s study and before the end point of Szarfman et al’s presented data, there were 38 reports for gambling and Mirapex - that is a 149-fold increase annually.
Research misconduct consisting of omission is classified as falsification and is defined in CFR 42 93.103(b) as follows:
“Falsification is [intentionally]... omitting data or results such that the research is not accurately represented in the research record.”
Given that without the reports generated by the publicity of the first study, there are virtually no reports involving Mirapex and gambling, and therefore no exorbitant reporting ratio, this omission clearly results in the inaccurate representation of the research in the research record.
That leaves the question of intent.
In the absence of some sort of admission on the part of an author, the determination of intent in the context of omission can only be inferred from the answers to the following questions:
- was the author aware of the relevance of the omitted data (precludes ignorance);
- was the author in possession of or did the author have access to the omitted data (precludes lacking access to the data); and
- did the omission of the data require that the research record be written differently than it would have been had the omitted data been included (precludes oversight)
Anuket gets a reply from the FDA, and then she hits them hard again:
Anuket: (Excerpts from her reply to the FDA): …The interpretation of my criticism as being of a failure to include raw data for its own sake is wildly inaccurate….
…I am not sure what your point is. If the data found in the AERS can be used as a basis for asserting the existence of an "Association Between Pathologic Gambling and Parkinsonian Therapy," then surely the same data can be used as a basis for asserting an association between publicity and reporting rates - and if the former is considered publication-worthy, even in the carefully disclaimed (and completely ignored) absence of evidence of causality, then certainly the latter, which offers what is taken as evidence of causality in the very study in support of which Szarfman et al have written their letter, i.e., temporal coincidence, should be considered at least as valid, relevant and compelling…
Do I correctly understand you to be saying that you find it plausible that:
- the authors, at least one of whom is a statistician, were genuinely uncertain as to whether or not the nearly 100% jump in reporting beginning within days of the first publicity might be related to that publicity?
- In the face of that uncertainty, the authors chose neither to explore the possibility of an association more deeply nor to fully disclose the potential magnitude of the effect of that possible association on the reporting ratios?
- that in spite of the fact that the probability that the jump in reporting in 2003 vs 2002 and probability that 39 out of 67 gambling reports be associated with the same drug were due to chance is equally small (p-value for each is less than or equal to 0.001), the authors considered the latter publication-worthy but did not consider the former to be even worth definitive mention?
Do I correctly understand you to be saying that you find it plausible that the authors did not consider a nearly 100% jump in reporting beginning within days of the first publicity to be relevant data?...
Bob sends a letter to a veteran bio-chem scientist, Dr. Derek Lowe.
Dear Dr. Derek Lowe,
Professor of Biomedical Research
Columbia University, NYC
I thought that you might find it interesting that while in the waiting room of a hospital in Montreal, an elderly woman, who had had PD much longer than me, gave me a photocopy of your article about Andy Grove, in which you say that Andy Grove is “rich, famous, smart and WRONG.” It’s one of the hand-outs that experienced Parkinson’s patients pass down to the newbies, the newly diagnosed.
Attached to it were published comments from other bio-med specialists:
- Message to Andy Grove: I'll listen to your ignorant, ill-informed comments about drug discovery if you listen to my equally ignorant, ill-informed comments about chip design.
- A more blatant and ridiculous example of comparing apples and oranges I have never seen.
- Grove does not grasp the difference between science and technology.
- He's an idiot. You don't have to understand pharma to know better than that. You just have to understand the tiniest bit about business.
- Andy Grove is just some rich, spoiled guy who thinks he can buy whatever he wants. Now that he has Parkinson’s, he thinks he can just go buy the cure. It doesn't exist.
- Luminaries like Grove get a totally warped sense of what we know and don't know.
- What's up with the Neuroscience meeting giving Grove the platform to say all this stuff. I hope people laughed him off the stage or at least gave him some hard zingers after his talk.
- Grove should throw his billions at the disease instead of complaining.
- One of the major problems is that upper management is thinking and behaving *exactly* like Mr. Grove. Far too little understanding of how scientific progress really occurs.
Most Parkinson’s patients had no inkling about how the Parkinson’s industry functions, or where the $200 million per year goes, or who makes the decisions, or what criteria they use to make the decisions, or what attitude they have towards their lab rats. We are starting to find out, and the stories are handed down, almost secretly, from the cohort that is closer to death to the cohort who have more recently found out what their fate is to be.
So Andy Grove is rich, famous, smart and wrong.
Rich for sure, having used research to create one of the five most valuable companies in the world. And he wrote a personal cheque for $62 million for Parkinson’s research. (And you didn’t get any of it, strangely.) Famous? Not at all. Science and computer geeks know the name, but I never heard of him before; most people have never heard of him. But smart, and wrong? Hmmm.
Dr. Lowe, you informed Andrew Grove that there is a difference between doing research on silicon computer chips and doing research on human beings.
Well, d’uh, Us spastics is brain damaged and mentally ‘tarded ‘cause we got the parkinsony-ism so we not know peeple not same-same like komputers chips.
There is flaw in your thesis, sir. How can you say Grove is smart if you also say he is too stupid to understand the difference between creating computer chips and creating cures for people in pain? You say he is smart but your entire article is about how stupid you think he is. You entire article states only two things: (1) Grove is stupid and, (2) Grove is WRONG.
Wrong - that’s a tricky word to use when addressing Parkinson’s patients. You may mean “wrong” in the sense of a mistake – the wrong answer on a math test at school. We mean “wrong” as in “right and wrong”. Good and bad. Ethical and Unethical.
Dr. Lowe, in some back-room or basement of the university, there may still exist a “History Department”. You should check it out. There is this concept, invented by a Jewish tribe thousands of years ago, that time does not move in circles, it moves in a line, it progresses, it moves forward, and what human beings do matters; we create history. The past influences the present and the future; what happened “in history” and our perception of it can influence what we think and what we decide to do next.
So when you say that Andy Grove is WRONG it means something different to us.
For Parkinson’s patients, there is a time before the Amgen GDNF experiments on humans. And a time after the Amgen GDNF experiments on humans.
Or as the elderly woman told me when she handed me your article, we believed one thing before they killed the monkeys and sent the People With Parkinson’s home to die, and we believed a completely different thing after that.
The word “WRONG” uttered in the context of Parkinson’s does not conjure up images of Grove being mistaken in his analysis of the slothful, fossilized, bureaucratic, incompetent and generally useless Parkinson’s research boondoggle.
The word “WRONG” uttered in the context of Parkinson’s conjures up images of the Amgen GDNF betrayal. It was the pivotal event of Parkie history since, oh, since about the time levodopa was introduced 50 years ago. Not much happened between those two events, or since.
What was done to those people was WRONG. No caveats, no footnotes, no corporate press release, no spin; no reasoning from the lawyers and accountants, no list of reasons why the decision was made. There might have been many reasons, but none of them justify what was done.
It was WRONG. And the consequences go on and on.
And Andy Grove was speaking for us, because he is moderate. We would have called for mass firings and trusteeship.
Andrew Grove, still being stupid and wrong; with increasing difficulty speaking now that his Parkinson’s is so advanced. He says:
“The peer review system in grant making and in academic advancement has the major disadvantage of creating conformity of thoughts and values. It's a modern equivalent of a Middle Ages guild, where you have to sing a particular way to get grants, promotions and tenure. The pressure to conform to prevailing ideas of what causes diseases and how best to find treatments for them means you lose the people who want to get up and go in a different direction. There is no place for the wild ducks. The result is more sameness and less innovation. What we need is a cultural revolution in the research community, academic and non-academic. We need to give wild ducks the opportunity to emerge and quack their way to success.”
Andy, Andy, Andy. They sure as hell won’t let you speak at the next annual convention.
Note to file: The Litmus Test: Before letting a surgeon drill holes in your brain and implant pumps in your stomach and inject chemicals through your skin into your stomach for three years to test his employer’s latest product, find out what that person believes about the Amgen DNFG clinical trials. If that person believes that what was done to those volunteers was acceptable, ethical, and normal, then run, don’t walk – run in the other direction, and spread the word among People With Parkinson’s, so we may be forewarned. If they flunk the litmus test, they are in the wrong line of work.
There are some of us – one woman in particular comes to mind – who simply do not take levodopa. They just live the pain instead. I do not have the courage to do that, but this woman does. She does not trust the drugs. Amgen shattered a delicate cup into a thousand pieces, and no one has as yet found a way to rebuild and fill it up. The Monkey in the Middle was there for us, and then abandoned. Volunteers are not so easy to come by now. And some people actually stop seeing the doctor, stop taking levodopa; turning inward and silent, with that “thousand-yard-stare” like you see in soldiers recently returned from a major slaughter in battle. Staring into the distance, apparently seeing nothing. An hour has gone by and still she stares.
Good thinking, Amgen. Good thinking. Is that how they teach it at Harvard Business School? Subprime ethics bundled with deceptive contracts and sold to the brain-damaged volunteers who have been told it’s for the good of mankind? But you did find out the drug works; it’s the delivery system that is hard to amortize. Now Amgen is trying to sell the patent to another drug company! We should warn them that it is a pyramid scheme, where you bury yesterday’s customer and use the money to attract a new customer who does not know what happened to the previous cohort. That’s why People With Parkinson’s For A Long Time are passing stories down to the Newly Diagnosed. As with any oral tradition, details are forgotten or changed; but the core of this story is dreadfully true. An atrocity was committed, and it was entirely within the bounds of “Normally Accepted Practise”. It was approved by the ethics committee. It was protected by law. It was decided without the knowledge of the patients, without even the presence of anyone who had the disease. And then it was forgotten. By everyone except the People With Parkinson’s. Elephant memory.
Trust was broken, shattered like an empty cup. Who can rebuild and fill it up?
(Update later in this chapter)
Newsflash: Las Vegas over-run by sex-crazed Parkinson’s patients gambling with embezzled money and eating chocolate, and…. and… Oh My God, No !!! They are eating PICKLED HERRING! Somebody call in the tort lawyers.
Anuket said: The reason no mention was made of any association between compulsive gambling and mirapex is because there was none - not even a hint of one - in fact, only one report associating the two came into the FDA's adverse event reporting system (AERS) database prior to the publication of the first gambling study in 2003 (which actually failed to find an association, if you do the math), and that came in only a month before the study was published. that means there was zero indication in clinical trials, and for the first six years Mirapex was on the market, zero reports to the AERS.
Bob: What might the consequences be, for bringing grief and sadness to an Egyptian Goddess? They say, the Sphinx is watching; they say, the Nubian tribe protects her; they say, she is the Giver of All Joy of the Heart; they say, it is not a wise man who causes sadness to a woman who is considered by the People of the Nile to be the personification of the river itself.
There are mistakes, and then there are mistakes. This was one of those. The raiders of the Pyramids died like flies from the ancient curse chiselled in stone over the tomb. What they did to deserve such a fate was nothing compared to the surprises that await an unwise man who brings deep sadness to the Giver of All Joy of the Heart. At a very minimum, she could cause a Biblical level of flooding; as the woman who is the water of the Nile, She Who Embraces has the power to flood the known world, all the way down to the sea. And then would come clouds of locusts. Such are the sayings of the People of the Nile. They say, you should flee at night, and take your chances crossing the desert on foot. They say, do not allow the Nubian tribe to take you alive.
Bob: Hello? Transat Tours? I want a refund.
Bob said: The lucrative research avenue for Parkinson’s is not to find a cure for the disease, nor to find a cause, nor to find ways for us to be less miserable. The lucrative research avenue is to prove that the brain-altering drugs we take, cause from 3% to 13% of People With Parkinson’s to become addicted to gambling, sex, drugs, shopping, chocolate and late-night TV. Which, if we add in the Blues and dancing, appears to me to be the best set of priorities we could live by; it could replace the Ten Commandments as far as I am concerned. Hey, did you ever try sprinkling powdered Mirapex on pickled herring, and then chugging beer, and then dancing to Darcey’s Blues? Shee-it, mon. Uuuuu-HA! Shee-it. Oh, was I not supposed to say that?
Anuket’s Crusade: To recap the background provided in Part One, in the 2005 study entitled “Pathological Gambling Caused by Drugs Used to Treat Parkinson’s Disease,” the authors mine records of Parkinson’s patients seen at the Mayo Clinic in Rochester, MN (MCR), between 2002 and 2004, and find 11 people who had developed pathological gambling (PG) - they conclude that the PG was caused by Parkinson's drugs. The authors so completely fail to provide evidence compelling enough to support this conclusion that the fact that this study was published in a peer-reviewed journal boggles the mind. It is available online for free at the Archives of Neurology.
Bob: Anuket, Visualize yourself on stage, making music.
Dancers? We can hire some. It is the art that counts.
Music that speaks to you personally; music that hits your feelings and describes your own world;
And loud. That’s you there, on stage, telling truth and beauty.
Anuket’s Crusade: There are those who point to the role of dopamine in addiction, but there are serious questions that remain not only unanswered, but unasked. For example, if one’s medication is maintaining an appropriate level of dopamine in the brain, why would one be any more vulnerable to addiction than anyone else?
National Post: “Almost one in 10 of the Parkinson's patients studied by psychiatrists in Calgary was found to have a gambling addiction…”
Toronto Star: One out of every 10 Canadians, aged 15 and over, have symptoms consistent with alcohol or illicit drug dependence, according to the Centre for Addiction and Mental Health.
Errrr, let’s see. Anybody got a calculator for the math in this one? One in ten Parkies is an addict. One in ten Canucks is an addict. Let’s see now, if we could get some scientists to explain the math… one in ten compared to one in ten…. looks about equal. Hell, no research grants for that. Don’t tell us they are the same as everybody else! They are not like us! Bring us something titillating about zombies on drugs having sex in gambling casinos. Further research found out that:
….140 Parkinson's patients aged 44 to 88 in three Alberta centres were assessed them for gambling addiction using standard tests. They concluded that 3.6% were problem gamblers and 5.7% pathological gamblers, a more serious form of compulsion.
The 9.3% total compares with a rate of about 1.6% among similarly aged people in the general population.
CanWest News: The incidence of pathological gambling in treated Parkinson’s patients is 8% compared with 1% in the general population.
The Mayo Clinic: 13% of People With Parkinson’s are addicts. Of the 1,500,000 People With Parkinson’s in the U.S.A., they based their conclusion on 11 people. Yes, eleven.
Research on Parkinson’s would indicate it is in the 3% to 6% range, said Dr. Valerie Voon, a Canadian psychiatrist now based at the U. S. National Institute for Neurological Disorders and Stroke in Washington.
But: According to the National Association of Sexual Addiction Problems, "6% of Americans are sex addicts." That’s not 6% of the People With Parkinson’s, that’s 6% of everybody – men and women. Starting at what age? Ah, more research grants required for that. And of course they do not define the meaning of “too much sex”. A lot of the researchers in the labs probably think that having sex more than twice a year makes you a pervert.
The medicalisation of behaviour is more moralistic than scientific. It’s the village priest pointing the moral finger at the fornicators, and saying God will punish them with an illness. It's the New Soviet Man, selecting those in need of re-education. And compulsive shopping – it has been declared a mental illness too, with its own associations to send out newsletters and collect money. This is all very funny until you recruit 48 “addicted shoppers”, drill into their brains and put pumps in their abdomens and then throw them aside. Any compulsive shoppers want to volunteer for a clinical trial? Any sex addicts want to volunteer to have it fixed for them, permanently? And chocolate addicts – don’t they have institutions where they can be locked up? This is science we are talking here, science in the service of social control.
Excerpts from Anuket’s Crusade
Gambling & Parkinson's Meds – Just Read the Studies, OK? They Are Short!
… chances are you have seen at least one headline since August of 2003 purporting an association, and even a causal association (there is a distinction) between a certain type of Parkinson’s medication and pathological gambling (PG).
Since then, one hears – rarely firsthand, in my case, and usually not even firsthand for whomever one is talking to – horror stories of people losing their jobs, houses, spouses, children, everything, because they started to gamble uncontrollably while on this type of Parkinson’s medication. The primary “evidence” of an association is a loose (so loose as to be undefined, in some cases) temporal relationship between the start/cessation of the drug and the onset/cessation of the behaviour.
The medications in question are known as dopamine agonists (DAs), and they function by stimulating the reaction on the part of dopamine receptors that dopamine would if it were present in the appropriate quantity – which it isn’t in the case of Parkinson’s disease (PD). The dearth of dopamine, which is crucial to the facilitation of normal movement, results in three cardinal symptoms: tremor, bradykinesia (slowness of movement) and rigidity (involuntary, immobilizing clenching of the muscles).
Anuket keeps on hitting them:
When I first read about the gambling claim, I was disturbed for two reasons. First, because for many people, DAs provide a grace period of indefinite length before they may have to start taking the mainstay of Parkinson’s therapy, levodopa, which is crucial, given levodopa’s side effects. Second, because I knew that compulsive behaviour could occur while one was taking a DA but be completely unrelated to it.
WHEN THE “GOLD STANDARD” FOR TREATING YOUR DISEASE IS SAID TO HAVE A HONEYMOON PERIOD, YOU KNOW YOU ARE IN TROUBLE
Levodopa works for varying periods of time for each person – the younger one is, the shorter the “honeymoon period” is likely to be. The fact that the term “honeymoon period” is employed at all, in reference to the period of time during which the drug actually works should be a giant red flag to anyone considering taking it.
Once the honeymoon period is over, which is within five years for about 80% of those who take it,…. the efficacy of levodopa begins to deteriorate, a phenomenon euphemistically referred to as end-of-dose “wearing off.” There are various strategies for trying to manage these deficiencies, which ultimately leave most people with PD tied to a complex cocktail of medications (upwards of 20 pills per day) that must be taken on a meticulously timed schedule– all of which might not be so bad if these drastic measures actually worked, but they don’t.
The length of efficacy of each dose continues to decrease, leaving people immobile with rigidity at inopportune moments. People also start experiencing mid-dose failures of the medication (known as “on-off fluctuations”). These are even more unpredictable, and therefore dangerous, than the end-of-dose wearing off is. And when I say dangerous, I mean like falling down in one’s house and not being able to get up. Keep in mind that one’s inability to move will not just go away by itself – one would be stuck there until someone happened to come along. And, for the piece de resistance, when people are experiencing the most benefit from levodopa, i.e., their ability to move is at its peak, they also experience dyskinesias, which are uncontrollable, involuntary muscle movements, which, as you might imagine, interfere with the benefit one is gaining from being able to move.
I do not have dyskinesias myself, but have come into contact with quite a few people who do. For example, I spoke to one woman on the phone who said she was lying on the floor because her bodily movements were so violent that she could neither stand nor sit; I could barely hear her over the noise of the handset being knocked around.
Once this side effect manifests, it only gets worse. There are myriad drugs, known collectively as levodopa adjuncts, prescribed in the name of ameliorating all of these debilitating side effects, but none of them really works. Once the honeymoon period is over, it is straight downhill, at one speed or another, to brain surgery – the ultimate levodopa adjunct.
Anuket is relentless: DOPAMINE AGONISTS – NO HONEYMOON PERIOD
My own experience has shown me that DAs can be effective indefinitely, without any of the side effects that come with levodopa. I have been on one for six years, and while it is not as effective as it once was, I do not have dyskinesias, I do not experience end-of-dose wearing off or mid-dose failures – and I have had symptoms for 10 years.
As far as randomized, controlled, clinical trials go, a study published in 2004 had the following to say:
“Our findings show that after 4 years of treatment, 74% of subjects assigned to initial levodopa experienced a dopaminergic motor complication (wearing off, dyskinesia, or on-off fluctuations) compared with 52% of subjects assigned to initial pramipexole. The treatment differential was most striking for dyskinesias (54% of subjects in the levodopa group vs 25% of subjects in the pramipexole group) and wearing off (63% vs 47%, respectively)” ….
(…. Excerpt only; for full text see Anuket’s Crusade website)
However, a second study published in 2006 analyzed the same data as above
COMPULSIVE BEHAVIOR CAN OCCUR WHILE ON A DA BUT BE UNRELATED
It also disturbed me because I knew that one could engage in compulsive behaviour that was completely unrelated to the DA one was on, because it happened to me. For part of the six years I have been taking a DA, I got a little too much pleasure out of shopping – but it could not have been classified as a side effect of the drug by any of the standards of measure used by any of the studies I plan to dissect. I was depressed (due to circumstances in my life for the most part unrelated to Parkinson’s) plain and simple, and that is what the onset and resolution of the behaviour corresponded with, temporally speaking – it did not correspond with initiation of the drug or any dosage change (there has been no dosage change in almost six years).
So, I started reading studies.
But before I go on, I want to be very clear that I am not advocating the taking of pramipexole over the taking of levodopa even if with pramipexole one experiences adverse events that one considers intolerable. I am advocating being fully informed when making decisions about one’s therapy. I am advocating actually reading the studies themselves, because what gets published and publicized is mind boggling. I am advocating that people not eliminate pramipexole as an option without even trying it, based solely on this sort of publicity. But I would never advocate that anyone continue to take something they feel is not good for them.
Excerpt from Bob’s letter to a lawyer suing the makers of Mirapex:
Nuns on Mirapex went to Vegas and had orgies. A small-town bank manager embezzled from the bank and spent it all in Vegas. All because of Mirapex. And the researchers are more eager to find out about the sex and the nuns in orgies than to find a cure for Parkinson’s. And the newspapers adore these stories.
Is this considered to be serious science? What percentage of other fatally ill people go hog-wild when told they are going to die? Of all the gamblers in Las Vegas, how many have Parkinson’s? How do the gamblers who do NOT have Parkinson’s compare to the “general population”? What IS the “general population”? Everybody except People With Parkinson’s? Or everybody except gamblers? And if 3% or 6% or 8% or 13% (depending on the research grant, or the definitions, or the sampling, or something) of People With Parkinson’s are addicted, how many of those are addicted to gambling and how many to sex? Or chocolate? Some reports make no difference between chocolate and cocaine – it’s all “compulsive”.
There are billions of dollars in lawsuits going on about this, so of course the casinos, the lawyers, and the pharmaceutical industry are very eager so pay money for more research provided it reduces the liability they may face.
So if 8% of People With Parkinson’s become very extroverted and loud and behave wildly, that’s where research is headed - it is exciting, glamorous and lucrative to set up your research lab in Vegas.
But the other 92% of People With Parkinson’s tend to become introverted, withdrawn, silent, closed off. It is one of the major problems of PD – many tend to drift off and remove themselves from society, become isolated and cease communications with the human race.
But that is not exciting research that the media will jump on. The media LOVE the money and sex and danger – the disease that turns you into James Bond. A small-town bank manager embezzled from the bank and blew it all in Vegas. And the press say it is because he is a Parkie. I SAY IT IS BECAUSE HE IS A THIEF.
But, promised millions of dollars in damages, and seeking revenge against the Parkinson’s establishment for the atrocity that was committed by the Amgen experiment, lawyers encourage People With Parkinson’s to testify in court that they could not control their own actions; the drugs made them do it. And now there is a case in the USA where someone is claiming they do not have to pay off their bank loan, because when they signed for it, they had “diminished mental capacity” because of Parkinson’s.
Public acceptance of Parkinson’s is set back by about three centuries. We can’t have brain-dead zombies on drugs wandering in the streets if they are unable to control their immediate impulses. You can’t hire someone like that to do a job: they might embezzle from you for gambling, have sex with everyone around you, and leave chocolate-bar wrappings all over the place. People who cannot control themselves cannot be allowed to be free. There are institutions where they can be warehoused until they die.
So that’s where the war against Parkinson’s stands today.
The industry believes that what was done to the Amgen volunteers was okay – they have paid “bio-ethicists” to certify it.
The 48 volunteers disappeared from history and have been forgotten by all but a few.
People With Parkinson’s are suing the only companies that make the drugs that I need to survive.
In the court cases, People With Parkinson’s can win millions of dollars if they persuade the court that they have no free will, cannot control their own actions because of the drugs, and, like children or the severely retarded, should not be permitted to have a credit card or a bank loan because they lack “executive decision-making ability”. They are winning an argument that is very dangerous to win.
The “general population” finds out that Parkinson’s patients are unreliable, unemployable: they get addicted and cannot control themselves; they steal to go gambling & etc.
We have gone back about 3 centuries. Exorcism will be the next wave of therapy.
In Part One, I addressed the authors’ failure to adequately support their central assertion, that DAs cause PG, in the context of what criteria must be met to identify a causal relationship. In Part Two, I addressed specifically the authors’ failure to provide any indication of the prevalence of this phenomenon and show how that pretty much single handedly invalidates the study. And in Part Three(a), I will address the authors’ failure to delineate the parameters of what they call a temporal relationship, and question the resultant inclusion of two of the 11 PGers.
I apologize for the enormous gaps between my posts but I write these things at night, and my meds are only carrying me through the work day in terms of typing. So, I may have to finish Dodd in more bite-sized bits.
Dodd et. al. base their assertion that there is a causal association between dopamine agonist (DA) therapy and pathological gambling (PG) on the presence of what they call a temporal relationship. A temporal relationship exists when Outcome Y follows the introduction of Variable X within a period of time that is considered plausible for a connection. Plausibility is determined by the natures of variable and the outcome – for example, if Outcome Y is deemed to be an allergic reaction and Variable X is a bee sting, the plausibility of their being related remains intact for a far shorter period of time than if Outcome Y is lung cancer and Variable X is smoking.
It should come as no surprise at this point that Dodd et. al. fail to delineate the parameters they use to identify the purported temporal relationship between DA therapy and PG.
Bob sends a letter to the President of a company with 600 employees:
(Names deleted to protect the guilty)
I looked up the word “scumbag” in the encyclopaedia, and there was your picture. You finally excelled. Your mother must be so proud.
I do not represent Erik. I exchange e-mails with him. And with a dozen of his co-workers. Your employees.
Erik worked for you for 15 years. That was about 14 years and 11 months and three weeks and six days and seven hours too much. He is too fine, too refined, too honest, too loyal, too hard-working, too competent, too intelligent and too valuable to be wasting his time working for a small-minded, hollow-shelled vulgarian such as yourself. He deserves much better. And you deserve much, much worse.
So as you can see, we don’t want you to give him his job back. We are not asking compensation, or even for a decent severance package, as trying to be “decent” would cause your head to explode, spraying toxic waste and foul, putrid rotten excrement all over the neighbourhood.
We are not asking for anything from you, because there is nothing, nothing, nothing that you have, or own, or live, or think, or do, that we would want to have slithering around in our lives.
Your memos to your employees are comedy gold, if we read them out loud with different accents, such as a British accent, a retarded accent, a cowboy accent etc. Done as a series, it is quite funny. YouTube would love it.
It is good to have such scumbags among us, to remind us just how rotten a human being can be when they have no principles or faith or self-awareness; For you, we are all toys with a big key in the back, and you can wind us up and we will scurry around at your command, but if we fail to bend over when you push the button, we become the toy that you smash and throw out. Or give to the Christmas baskets handed out by tax-deductible charity organisations, such as the one where you are on the Board. We just have to laugh when we see the local press fawning over your presence at the annual charity ball, with your latest rent-a-bride. As free entertainment, it is fun to watch your entourage of sycophants lining up to kiss your ring and swear fealty to defending the tiny pond where you are the only big fish. And we burst out laughing when you make your speech about charity and community involvement and good corporate citizenship. When the spotlights are on and the news cameras are whirring, it’s all about how much you really care. But when the cameras are gone, and there are no witnesses, and the lights are turned off, there, in a dark corner, Mr. Millionaire Charity is beating the shit out of a cripple, just because he can.
Erik is 37 years old and he finds out he has young-onset Parkinson’s; he has been sentenced to death in a slow downward spiral; a fatal incurable disease; a week later he finds out he lost his job, and then he finds out the whole town has been told, by you, that he has something like leprosy-of-the-brain; that he is incapable of controlling his own actions. Look at him. Watch Erik work. You see anything wrong? Little bit stiffness of the joints. He is in the early stages. It is hardly perceptible.
And we explained Parkinson’s to you in depth, and we had his neurologist call you to say that Erik is fully able to work and is no danger.
If you fired him because there is a recession, that would be normal. In fact, I am so conservative I believe that you have the right to fire anyone at any time. Freedom of association. But where do you get off telling people that Parkinson’s leads to a break-down of morals? Gambling and drugs and other addictions? And you spread that around, for the “security” of your employees? What, exactly, is wrong with you?
You have known Erik for 15 years and – check his file – he has never missed a day at work. Not even for illness. Ask his co-workers about how he works. Ask his manager. Ask anybody in town. Erik is not the problem in your company.
Oh, and Vegas, that’s where you hold your annual sales meetings, right? Erik has never been to Vegas. You go there every year. Erik does not gamble.
Does it make you horney to deliver the coup de grace to a wounded person? Does it give you an erection? Does it make you feel strong? Business is war, you say. And now you are finally a warrior with blood on your hands? You make me puke. If a war started, you would throw the first stone and then run and hide, wetting your pants all the way.
Good luck, Mr. Scumbag. What you are doing never wins. It may take time, it sometimes takes a long time, but companies that do what yours does, and people who do what you do, never, never, never win. It’s a simple law of nature. You could turn it around, but we both know you won’t. In your theology, there is no heaven, there is only hell; and there is nothing to look forward to, because you are already in hell. Your deals are all long-since done. You have no more cards to play. You amortized your conscience at sub-prime rates and sold it on the derivatives market. You had no use for it anyway.
When you are so low down that you have to maul a fine human being such as Erik, you are too low to recover altitude. You will crash into the septic tank that is the rotten foundation of your ill-begotten business.
The Parkinson’s e-mail posse is agitated… they have seen this kind of thing before….. There are about 200 e-mailers asking me what I am waiting for.
I’m waiting for a train to come smoking down the track.
Friends - We don’t need to do anything about Mr. Scumbag, except take the word “Mister” out from in front of his name. His use of the word makes real Misters feel ashamed. He will fail and be disgraced, all on his own. There are some things that just take care of themselves.
So, Scumbag, just continue on your merry way; the less we hear about you, the better. But cease and desist from stating that Erik’s disease disqualifies him from full participation in the activities of his choosing, or the activities of what you strangely call “your community”.
We helped Erik get another job, with your competitor, in a higher position. He is very highly motivated. He will be recruiting some of your best employees – the ones who are really fed up. You will receive some resignation letters tomorrow morning. He knows your big customers better than you do, because he has been serving them for 15 years, while you were out playing golf or cruising in the Bahamas. Erik has friends and supporters out here, unlike you. It is not because he has accomplished more in his life than you have. It is because he is a better human being.
There is no reason why he has to suffer just because you can’t find anything big enough to stuff into the gaping hole in your soul. I wish that for just one time, you could walk in my shoes, and you would see how repulsive it is to know you.
I trust that I have made myself clear and this completes our conversation.
Bob said: Do you record these at home? Is that you playing guitar too? Did you sell albums?
Anuket: yes, i record these songs at home, with a $25 microphone from radio shack and a program called garageband that came with my macbook pro. yes, also, the instrument is me - everything is me - but the instrument is a piano keyboard that plugs into my laptop and works with garageband, which can make it sound like other instruments. no, i have never sold or made any albums. i have been singing since the 9th grade - was in every school chorus there was - madrigals, jazz choir, and there was one other, too. i sang for a little while in a choir in college, but between then and about a year ago, i didn't sing much at all. now, i am realizing that i would rather sing than do pretty much anything else. my relationship with these songs is that something in each one of them captured my heart.
Bob writes to a company:
What is it with you? I know negative selling has long been the rage in some industries - differentiating yourself by spewing out a contrived list of put-downs of your competitors. But you really take it too far. It was bad enough when that young guy came in from the country and you went around telling everyone he would be no good in the rough, tough world of the city. Your life experience was so narrow you somehow thought that living on a farm in the forest was not rough and tough, compared to living in suburban townhouse. You made a fool of yourself, which was not hard to do.
Then when Hank had his heart attack and was down and out for a year, you targeted all of his clients, which did not make you look like a fool, it made you look like a crude and shallow creep.
Now you have been calling my clients telling them they should switch suppliers because of the dangerous effects of Parkinson’s, and then you recite the list: mentally ill, will embezzle your money and be addicted to gambling, will be unable to work anyway, etc.
So you look like a fool again. All of my clients know I have Parkinson’s; all of them read this weblog. In fact, my clients suggested that I should include your personal name and your corporate name right here, right now, in this sentence. Oh, it is so tempting !!! His name is…. And he represents the well-known firm of…. Oh Lord, take me away from this temptation! And I could YouTube you into commercial oblivion!
But it is actually more fun to watch you screw up your own life. You spread your stink like an alley-cat. You claim that the cream rises to the top, but the only thing I have learned in observing your career is that shit floats.
Keep up the good work. You provide a clear choice in the marketplace. They can hire the handicapped, or they can hire the reprehensible.
Have a nice day and a pleasant tomorrow.
Bob hassles Dr. Daniel Levitin, who replies and does not give up. This site was launched to defy what we thought he meant: that we cannot dance. That’s why every chapter starts off with the headline: Parkinson’s Patients: yes we can dance. Dr. Levitin aggravated and provoked us into this. All from one off-hand remark in his book “Your Brain on Music.”
Mon 26/11/2007 8:28 AM
To Dr. Daniel Levitin
James McGill Professor of Psychology and Behavioural Neuroscience
It is excellent to have a book published about music, and the central and essential part it plays in what it is to be a human being.
But there is a bizarre error on page 253:
"Many mental illnesses are now known to undermine the ability to dance or perform rhythmically - schizophrenia and Parkinson's, to name just two - and so the sort of rhythmic dancing and music making that have characterized most music across the ages serves as a warranty of physical and mental fitness, perhaps even a warranty of reliability and conscientiousness."
This is wrong. What were you thinking ?
Thousands of people are using dance to fight Parkinson's, usually alone in their homes - YouTube has videos of it, University of Calgary is researching it.
My complaint is that some Parkinson's people may not take up dancing if it filters down to them that a best-selling book by a neuro-scientist says that their condition undermines the ability to dance (when it is the other way around - dance and rhythm eliminate the disease, temporarily).
Maybe that line about Parkinson's was a throw-away line. But it is disinformation. Yes, Parkinson's makes it hard to walk. But dancing makes it hard to detect Parkinson's. And it always did, "across the ages". People get up out of wheelchairs and dance like teenagers. Blues is the Healer. Or Manitas de Plata. Or the last part of Beethoven's Moonlight Sonata, where he is Jimi Hendrix. Not necessarily music that you know from long ago. But, necessarily, music that you can disappear into, where the sound comes up through the ground, into your toes, up your legs, and out to your fingertips, and suddenly your hips are like rubber and your joints move freely and the pain is gone and for awhile, you are cured. It is an amazing thing to experience. And anyone studying the brain on music must surely have heard of it.
"Many mental illnesses are now known to undermine the ability to dance or perform rhythmically - schizophrenia and Parkinson's."
Let's conduct a simple test. University professors on one side of the dance floor. Spastics on the other side. Subdued lighting. Red wine or beer. I choose the music. It will start with Muddy "Mississippi" Waters Live; extremely LOUD; and then it will continue with some of my CD's from Darcey Jerrom's Friday Night Beer and Blues show at Dust My Broom.com. And that will be even LOUDER, because it is the medicine that myself and other Parkinsonians have been using every week - every day - for the past several years. Turn it up LOUD, stop talking, stop thinking, and permit your body to dance.
And we will see who can dance their ass off and who cannot: the neuroscientists, or their subjects. We will see who gets it on. We will see who will take up their bed and cakewalk. We will see whose brains are zapping with the music. Because the professors will dance to the words, but we dance to the heartbeat of the sound. We will see who is hot and who is not. Parkinson's "undermines the ability to dance?" As my folks used to say, too much book learnin' will seize up yer brain. Ya dance with a feelin', or you ain't dancin' at all.
Surprisingly, Dr. Levitin replied:
From: Daniel Levitin
Sent: November-26-07 8:36 AM
To: Bob Dawson
Subject: Re: Parkinson's - not my brain on music !
This is not an error. I checked this with many neurologists, specialists in Parkinson's, and with Oliver Sacks. Parkinson's affects people differently. While it is true that dance can be used as therapy, and that some people are unaffected by Parkinson's when it comes to dancing, this is not always the case.
YouTube and a single study at the University of Calgary should not be pit against the judgment of experts.
Bob keeps it going:
Nothing is always the case.
People are affected differently.
In a cold laboratory, suffering, frightened, dependent people are played cold music and they don't react to it. They have not danced in 30 years. And they are told that they can't dance, can't follow the beat.
And granted, I am not talking about the terminally ill; I am talking about patients who still have time to fight back against the disease. Possibly your experts are dealing with the dying, when all hope is lost.
But it is not just YouTube and U of Calgary where something is going on.
In fact the reason it gets on YouTube is that Parkinson's people are trying to get the word out.
Let's put it this way: you can't write, you can't type, you can't hold a spoon steady to eat, your bowels seize up, you choke when you swallow, you have difficulty walking. But you can dance. And ALL of the symptoms are gone. Until you drop from exhaustion. And then ALL of the symptoms are back. And this happens ONLY with music.
And the experts tell you it doesn't mean anything at all. Ah shut up, swallow your levodopa pills and get back in your wheelchair. There has been no progress at all, in 40 years - just new versions of the same drug.
And then you start finding out that hundreds of other people in many countries are having the same experience. They try it in their own living room. And for the first time in YEARS, they are free. For a short while. So what do the experts have to say about that? If that part of my brain is dead, then what is going on here? New chemical in the brain? The brain re-wires itself around the burnt-out area ? A temporary, last-gasp production of dopamine from the remaining brain cells ?
We do not get any answers from the experts, so we spread the word among ourselves, on the internet. If you have PD, find the music that affects you the most, and dance your ass off. Not having danced for decades, it takes some of them time to find their groove. But once they are into it, they dance as well as anybody else. Parkinson's does not inhibit dancing; dancing inhibits Parkinson's.
You've got it backwards. I just have to hope that people with Parkinson's don't believe you.
RE: Parkinson's - not my brain on music !
From: Daniel Levitin
Sent: November-26-07 10:24 AM
To: Bob Dawson
Subject: RE: Parkinson's - not my brain on music !
I didn't intend for this to turn into an argument between us. I am on your side. I have been lecturing about music and Parkinson's for 15 years, ever since the research in the 1990s at the VA Hospital in Northern California showed that people with Parks who couldn't walk, could walk if they set their feet to music. I know about the research that some people with Parks can overcome it through dance. Others can't. At all ranges of the spectrum. None of this is the point I was trying to make in the book, that certain neurological conditions that would otherwise be hidden can be revealed through difficulties with dance and music. Not all of the time but some of the time. This was not meant to discourage people with Parks from dancing. Only to show that sometimes Parks shows up first in difficulty coordinating muscle movement, even dancing.
Did you ever correct that momentary lapse of reason in your book about your brain on music? It's just a little footnote that seems to most people to be of no importance; but it is bizarre.
A top-selling science book written by an internationally renowned neuro-scientist, with tremendous support from prestigious reviewers - New York Times Best-Seller, Scientific American Book Club Selection, L. A. Times Book Award, published by the highly respected Penguin Books, says the following about me:
Bob Dawson is mentally ill.
Bob Dawson's mental illness is in the same category as schizophrenia, in some way that I don't quite get.
You can tell that Bob Dawson has Parkinson's, or schizophrenia, because he can't dance.
And he can't follow a rhythm.
And that's why, down through history, it has been understood that people with Parkinson's do not have what other people have, "a warranty of reliability and conscientiousness."
The misbehaving, addicted People With Parkinson’s are said to number anywhere from 3% to 13%, depending on which study the lawyers, casinos, pharmaceutical companies and Parkinson's patients choose to quote in the court cases, the hundreds of lawsuits for billions of dollars, being conducted against the only two companies that make the drugs I need to survive. And to win their cases - first guy won $8,500,000 - they MUST convince the judge and jury that they are incapable of controlling their own actions. And they are winning that argument. In fact, it has gone further - new court cases to the effect that People With Parkinson’s don't have to pay off their bank loans, mortgages or Visa bills, because the banks should have known that Parkinson's patients have diminished mental capacity and therefore could not have understood what was going on.
It's a dangerous argument to win.
These court cases teach the public that you can't trust a Parkie - they are mentally ill, psycho, unreliable, untrustworthy, unconscientious, they will steal your money and blow it in Vegas, and they themselves testify in court that they cannot control their own behaviour.
It's a very serious matter for people with Parkinson's trying to find a job. Or an apartment. Or a bank loan. Or the renewal of a driver's licence. If it's all factual, well the facts are the facts. Put them in institutions like the old days. Truth is truth. Let's not pretend the spastics are safe to have around if they are not.
But the whole story gets bizarre when you say that you can recognize these people by the fact that they can't dance. They can't follow a beat. That's just about all some of us can do, on the best of days.
And you say that you have been watching People With Parkinson’s move to the beat since the 1990's. How can you have known this for 20 years and still say that we can't follow a beat. What happened to those People With Parkinson’s who were moving to the music in the 1990's? Did they all die early? Were they tracked?
Where are the videotapes?
And somebody else says it was going on at the Veterans hospitals in Northern California much earlier than that - in the 1970's, the story goes, the neurological damage was among veterans who had spent several years spraying Agent Orange to defoliate Viet Nam. And they developed Parkinson-like symptoms. But typical of the murky, Byzantine, secretive and manipulative Parkinson's Research Industry - where they won't even share the results of their research with other Parkinson's researchers - I do not know if that Agent Orange story is true. Somebody told me they had seen the videotapes from inside the Veterans hospital. I think they moved in a line across a gym; moving their feet in rhythm to the music, which was sort of dancing. Maybe 20 years ago, maybe 40 years ago. Maybe never happened. If it did happen, nobody seems to have been told. But the People With Parkinson’s pass these stories around among themselves.
For sure, there are people who cannot dance. For sure, Parkinson's in its advanced stages is like being tortured day and night; people who cannot sit in a chair, or even lie in a bed, because they are trembling too violently. But it doesn't make them unreliable, it makes them soon dead. But, there are people in wheelchairs who get up and dance. And some People With Parkinson’s are trying to make it like training for the Olympics, or for a concert at Carnegie Hall, trying to activate the plasticity of the brain, to migrate from the burnt out dopamine bomb shelter to the parts of the brain that handle song and dance; to see if it is possible - let's say with 10,000 hours of rigorous practice - is it possible to teach the brain to teach the muscles to get it on permanently instead of for just a few songs - like it can take 10,000 hours of rigorous practice to teach your brain to teach your fingers to play violin at Carnegie Hall.
So you see all the fun you are missing.
There is a wave of dancing going on around the world, People With Parkinson’s trying to use dance to relieve the pain. We take it further and dream of actually kicking the disease in the ass - not making it disappear, but kicking it around a lot, mastering it like you master gymnastics at the Olympic level. Thousands and thousands of People With Parkinson’s are up dancing. (usually not enough commitment - the one hour on Thursday night in the basement of the church is NOT anywhere near enough. But it's a start.) And actually it is cool, when People With Parkinson’s read your strange sentence about how, being mentally ill, they can't dance, and then they DO get up and dance. It moves immediately to beauty, thank God, but it starts with a whiff of defiance. So if your sentence inspires them to prove you wrong, that's good. But these days, the problem is not what the People With Parkinson’s believe. The problem is what the "general population" believes, which is a mixture of medieval superstition, and the statements the media pick up from the entrenched Parkinson's research establishment.
Most of the time, we just ignore the outside world - what do we care if they think we are all vampires or gambling thieves who have endless sex, or whatever lurid story has been leaked from the researchers. We have our doctors and we have our dancing and we e-mail each other. The problem is when there is an attempt to "interface" as they call it, and the other person has read newspaper articles about People With Parkinson’s. Nuns in orgies. Bank managers embezzling. Uncontrolled gambling. Crazed shopping in stores and on e-Bay. In fact, it has gotten so bad, that the famous Mayo Clinic found eleven people with Parkinson's who were addicted to something, especially gambling; but also sex, chocolate and shopping. Sinful, sinful, sinful and out of control. ELEVEN people out of the 1,500,000 Americans who have Parkinson's, and out of the 30,000,000 people who visit Las Vegas every year. Eleven. But that's what people remember. People are afraid of someone who twitches and falls down, as if possessed by demons.
BUT - the thing to do is to print up cards with your quotation, and hand them out to people, and then start to dance. That would prove we don't have Parkinson's disease. They cannot discriminate against us when we have the Scientific American Book Club selection and the NY Times best-seller saying that you can recognize People With Parkinson’s because they can't dance. So if we dance our asses off, they will know we do not have Parkinson's. Of course we do have a Parkinson's disease, but not the one they hear about. The one they hear about doesn't exist.
Dr. Levitin replies immediately! (Usually we get no reply, except when we criticize law firms)
I seem to have hit a nerve here. Please understand that I work with patients with Parkinson's, and one of my closest friends and mentors died of it. By "mental" illness I didn't mean "psychological," but an illness of the brain. I now understand how this could lead to confusion; I was using the terminology that my colleague Oliver Sacks suggested using, and it made sense at the time. Oliver still likes that passage and in fact has used it in his own work.
Parks can (but doesn't always) lead to movement and motor control disorders. It was one of my mentors, Steve Keele, who showed back in the early 1990s that rhythm can be used to help Parks move from a frozen state, or to dance, but there is a decidedly unusual look to such movement and dancing, due to damage to the basal ganglia. The evolutionary argument that I was trying to explain - though not necessarily endorse - is that music making, listening, and dancing may have served as reliable indicators of physical fitness in evolutionary timescales. Although Parkinson's may not be heritable, and may indeed NOT indicate a lack of physical fitness, the larger idea is that our ancestors needed to use heuristics -- little tricks -- to figure out who was going to make a good mate and who was not. Those heuristics were sometimes accurate and sometimes inaccurate. This was all a relatively minor point in the book. I agree I could have done a better job of explaining and elaborating. I did not mean to offend you or the memory of my mentor who passed away ten years ago this month.
Please accept my apology.
Bob replies: Oh, no apologies required at all.
I am amazed how fast you replied, or that you replied at all. We usually get no reply. (Except when we refer to certain well-respected law firms as “reptilian predators”. That seems to strike a nerve).
I’m in the Blues group in Parkinson’s and largely ignore the outside world, but recently there have been uproars about the Amgen fiasco and the Mirapex lawsuits and Andy Grove and being fired from jobs and the gambling - there is no war on Parkinson’s; there is chaos.
The one thing that is rolling is the dance for therapy movement and the dance for beauty movement - and it is rolling across N. America and other countries to an astounding degree - even just in the past 6 months. As you are this musical person you should check it out.
But I feel they are not going at it fiercely enough; that it takes a lot more effort.
But it is amazing who all is up dancing, with PD - even in small towns now.
I am not at all offended; I am pleased that the Senior Executive Committee has declared that you passed the Litmus Test with flying colours, despite being hassled.
I want something about PD to shake loose. Trouble is my middle name. Your sentence DOES aggravate people enough to start dancing to prove you wrong. Along with a visit I had from a scientist from China, plus pressure from Darcey’s blues posse, your sentence provoked me into an entire website, which uses your sentence as a launch point. Don’t worry, nobody reads it except some People With Parkinson’s dispersed all over the place. I figure the next chapter I do will be the last chapter - so it would make great sense and knock everybody’s socks off if I put in the complete correspondence between us. It’s a political chapter; correspondence from the past few years.
Whereas all the chapters so far are not argumentative.
It’s a very long website to read and I don’t know of anybody who would plough through it unless they had PD.
It’s a rather 1960’s kind of thing - the Baby Boomers are getting PD and so we turn the music up LOUD and you would understand that.
Everybody agrees the dancing is good for PWP; good for anybody but especially us - but that is not the end of it. I think we can “cure” the disease. Not make it disappear, but get it under control -- by migrating to the music and dance parts of the brain, where the disease is too chicken to follow. May not be possible - but we do it for hours at a time; we dance for hours; can we prolong that; can we train our brains to go around the smoking wreckage of the dopamine factory? Show us we can do that and you get yourself a nice shiny Nobel Prize.
Post-script: Did not foresee ever saying this, but here it goes: we send our thanks and gratitude to Daniel Levitin, author of “Your Brain on Music” and “The World in Six Songs”.
Under new management: AMT Buys Amgen’s GDNF for Parkinson’s Disease
Amsterdam Molecular Therapeutics announced that it purchased a license from Amgen to use their GDNF gene for the treatment for Parkinson’s disease…. Conditions of the deal were not disclosed.
Prof. Sander van Deventer,
Chief Science Officer and Co-founder
Chief Executive Officer
Amsterdam Molecular Therapeutics
1105 BA Amsterdam Zuidoost, Netherlands
You bought GDNF from Amgen! We hope that you succeed with it. Through no fault of your own, your acquisition has skeletons in the closet. And I do mean skeletons. You should recognize the contribution made by the PD volunteers who were used to test the drug, and you should note the substantial evidence that many of them benefited from the drug before Amgen threw them overboard. You should contact the volunteers directly and learn about them, as Amgen is most unlikely to have told you the truth about anything.
There is real hope that GDNF, with a proper delivery system, may help millions of suffering people, and we are grateful if you even try. Be sure to honour and respect the people who sacrificed themselves to prove the benefits of the drug; the 48 volunteers who tested this drug, who were treated like cattle in a slaughterhouse by Amgen. Their names should be chiselled on your wall. Without their courage and generosity, you would not have the opportunity you have now.
And, you should embrace them publicly, if you have any hope of clearing the name “GDNF” from the stain of shame that Amgen poured over it. We know it is a good drug; but there is a great deal of distrust because of the misconduct of Amgen. You could start to heal the wounds by saluting the 48 volunteers who made it possible. And you will have to disassociate yourself dramatically from the perpetrators at Amgen, if you are to gain the confidence of Parkinson’s people. You will have to pass the Litmus Test, or else you will not succeed. The savagery that was inflicted on the volunteers must never be repeated, and if you want to work with Parkinson’s patients, you must understand that, or else find another line of work.
We look forward to supporting your efforts, rather than campaigning to shut you down. The choice is yours to make.
I sent you my address and telephone number
AMT press release:
AMT has started preclinical research of a gene therapy (AMT-090) that will introduce the gene coding for the GDNF protein. GDNF has potent neuroprotective effects for dopamine-producing neurons. Previous studies using intracerebral injections of GDNF protein in animal models of PD have shown that GDNF can efficiently protect injured dopamine-producing neurons, promote regenerative sprouting from the damaged dopamine axons, and stimulate dopamine turnover and release in rescued neurons. These data indicate that GDNF could restore dopamine function, prevent further neurodegeneration, and have the potential to restore and enhance neuronal function.
AMT-090 is intended to provide a consistent supply of GDNF to the relevant areas of these patient’s brains. AMT believes that this therapy has the potential to significantly extend the period with high quality of life, arrest ongoing neurodegeneration, and reverse some of the neuronal damage, resulting in a reduction of disease symptoms.
August 6, 2009
Prof. Sander van Deventer,
Chief Science Officer and Co-founder
Chief Executive Officer
Amsterdam Molecular Therapeutics
1105 BA Amsterdam Zuidoost, Netherlands
Hello? Hello? Is there anybody home? Has Amsterdam been evacuated? No one in your company will return my telephone calls, or answer letters or e-mails about GDNF. Even your Communications department does not want to communicate, which is very Orwellian. Are you starting a new clinical trial? Lots of volunteers lining up at your door? Did you tell them what happened to the last group of volunteers?
As it appears you do not want to hear from me, I introduce you to Volunteer Number 42 in the Amgen GDNF trials, years 2001 to 2004: TOM ISAAC:
"I think what hurts most is the total lack of communication by Amgen, who have put up a brick wall and won't discuss the issue.”
Ahem… Seems that Amsterdam Molecular Therapeutics has the same policy as Amgen… not a good start…
TOM ISAAC CONTINUES:
Sufferers who'd been trapped in a living hell were suddenly able to walk, talk and smile again. Men who had been unable to get up out of a chair unaided were walking normally across a room. Their hand co-ordination was unbelievable, in exercises they could move their hand easily from left to right, something that had previously been impossible under the onslaught of Parkinson's. The doctors didn't believe there was anything wrong with the drug and yet it was being taken away. They couldn't offer their patients an explanation because there was none to give. - Tom Isaac
And I introduce you to Volunteer Number 35 in the Amgen GDNF trials: STEPHEN WAITES
Stephen was 27 when he was told he had Parkinson's, and as his condition deteriorated, he had to give up his flourishing architecture business. He volunteered for the GDNF experiment. He says he was given back his life. 'I was able to restart my business. I had more than 40 projects on the go and I really had taken on a new lease of life. I could drive again and even bought myself a new Jaguar. GDNF made me independent, and after years of living with Parkinson's, I began to get my confidence back. It was a cure because it improved my condition more than 60 per cent - I could not ask for more than that and I was delighted. When I was told that the drug was being taken away I felt that they'd taken my life away along with it. I had committed myself to a huge workload and without the drug I couldn't fulfil my commitments. I've deteriorated since the GDNF was stopped - I can't drive any more so the Jaguar has had to go and we also had to downsize the house because I am unable to earn money. I was willing to sign anything to absolve Amgen of responsibility if anything went wrong, if only they'd let me keep taking GDNF, but they were having none of it. I am very low mentally now and I just can't seem to rise above it.' - Stephen Waites
That’s 2 of the 48 volunteers. Each one has a story. You should get testimony from all 48 of them, so you will comprehend the marketing problem you will face. Amgen said the drug was of no benefit, they said there was only a placebo effect; (eight days later they applied for a new patent for the format you are now working on); they lied and after that they told lies and after that they said things that were not true and then they confused us all with a series of falsehoods, after which they became deceptive, and then they committed a savagely cruel and brutal “project cancellation” that People With Parkinson’s have a habit of referring to as “None Dare Call it Manslaughter”.
You see, you have a marketing problem here, in terms of image and branding. How are you going to position your brand in the marketplace?
“NEW ADMINISTRATION! –THIS TIME YOU CAN TRUST US!”
Or how about: “GDNF – 48 volunteers agree – it’s so good, you would be willing to die for it.”
“The New, Improved GDNF – electric drills and abdominal pumps now optional!”
“9 out of 10 Parkinson’s researchers agree – it is unlikely you will be treated as badly as that last bunch of spastics who got butchered”
Dr. van Deventer, None of this was caused by your company. It’s just part of the baggage you purchased. But it is very, very heavy baggage. The stain of shame that Amgen poured over GDNF does not go away just by changing the name on the label and maintaining the same policies; such as, as Tom Isaac says Amgen put up a brick wall and won't discuss the issue.
If Amsterdam Molecular Therapeutics is following Amgen’s policy on this, is there any reason for us People With Parkinson’s to believe that you are not following Amgen’s policies all the way down the line? One thing that Parkinson’s does to us, curiously, is reduce or remove our sense of smell and taste. But it will be hard to swallow the new GDNF pills; we are afraid they are going to taste like blood.
The names of the 48 volunteers should be chiselled into the exterior walls of your head office. Then, maybe, just maybe, maybe we could start to trust you.
This one-way conversation, consisting of my questions and your deafening silence, is being published on the Internet. It may be forgotten by you and forgotten by Amgen, but it will be there in the computer memories of cyberspace, so that the children and grandchildren and great-grandchildren of the 48 volunteers will know that what was done was witnessed. The volunteers’ intentions were pure, their courage was awe-inspiring, and their generosity made us weep, when they offered up their living bodies in the hope that it might cure all of us, and then they were cut down by an enemy they never expected: the zoo-keepers.
But the old cohort is dying and being replaced by the newbies, who have never heard of the volunteers. So some senior People With Parkinson’s spread the word to the new cohort. The 70-year old woman who gave me the photocopies in the waiting room of the hospital and who told me about the experiments - the fact that she came at me was not spontaneous; it was arranged. Some PWP in the Montreal area read my Chapters 8 and 8.5, discussed it, and decided to conk me on the head. Emotionally instinctive, she told me just enough to make me angry.
The volunteers have been forgotten by the Parkinson’s Research Cartel ™ and “the general population” never knew about this in the first place; but some People With Parkinson’s want to keep the story alive, because all the rules and regulations and methods and attitudes and greed and ethical standards that allowed it to happen are still in place; in fact those who approved it are riding high, victorious, masters of the universe. That’s why it is too early in history for us to say, about the 48 volunteers, that it is over now and it is “time to move on” and let by-gones be by-gones. Because it is not by-gone. It is not over. It is right there, right now, in front of you.
There is this guy in the United Kingdom who has PD and he does a lot of Monty Python type of humour on the internet, such as YouTube. I find him hilarious, although in North America we usually think the British are always in the middle of a Monty Python skit because of their accent, and their wit. He proposes we get some of the surviving volunteers to make joke commercials to put on YouTube.
“The all-new GDNF – now in cherry-flavoured bubble-gum format, with FREE COUPONS for COOL GADGETS.”
“Ask your doctor for GRANDMA’S ORIGINAL GDNF WITH NO SUGAR OR ARTIFICIAL COLORING.
“No more messy stomach pumps! No more holes in the head! Now, ask your pharmacist for GDNF in snortable powder format! No fuss, no bother, no blood-soaked bedsheets, no more leakage from the holes in the skull, no more battery failures in the implanted stomach pumps – there are 48 good reasons why you will LOVE the all-new GDNF. Stock up in case we decide to pull the plug again. A limited time offer.”
“48 martyrs were crucified for you. They died for your sinful disease, you fornicators and gamblers. Repent! Repent! Buy our new GDNF drug now or else lose all hope of redemption!”
Run it up the flagpole and see who salutes!
Bob Dawson, President, Parkinson’s Underground Internet Conspiracy
Pre-post-script. July 27, 2009. AMGEN SOARS, EXCEEDS MARKET EXPECTATIONS
Bloomberg news – Even in recession, people need medical care… Amgen soared in heavy trading, beating analyst’s predictions by a wide margin… year-to-year profits at Amgen soared a spectacular 40%... The company expects full-year revenue to be at the upper end of its projection of $14.4 billion to $14.8 billion.
Now, let us spray the room with disinfectant, forbid those people to come anywhere near us, try to shake the horror out of our heads, and get back to the Prime Directive.
We send our thanks and our gratitude to The Mysterious – and so incredibly brave – Anuket. Her fighting spirit, her intelligence, her pain, her faith, hope and charity, shine warm light in our darkest hours.
Turns out the drug is being leased out in all directions
Letter to Professor Barbara Waszczak
Bouvé’s College of Health Sciences
716 Columbus Place, Suite 598 Boston, MA 02120
Please also forward to: Robert A. Schatz, associate professor of pharmacology and toxicology at Northeastern, and Mattia M. Migliore, assistant professor of pharmacology and toxicology at Massachusetts College of Pharmacy and Health Sciences
Letter to Barbara Waszczak:
Congratulations on getting a grant to fight for a cure or at least a treatment for Parkinson’s. We are thankful and grateful to those, such as yourself and your colleagues, who devote immense time and energy and soul to help other people who are suffering. GDNF showed great promise in the clinical trials.
The following is absolutely and entirely not your fault, not your doing, not your responsibility: there is an immediate, harsh and angry and bitter reaction to the last sentence of the press release that was sent out by Northeastern University: … “This research was possible with the generous donation of GDNF from Amgen.” That is a very polite and standard thing to say, but I receive angry e-mails about it – just that one sentence – because the only generous donation ever made in relation to Amgen’s monopoly on GDNF was when the 48 volunteers offered up their living bodies to test GDNF. The misconduct of Amgen towards the 48 volunteers has not been forgotten by People With Parkinson’s. The fact that Amgen still has a monopoly on this drug sticks in the throat. The fact that they have a supply on hand six years after denying it to the Parkinson’s volunteers brings bitter smiles among the patients in the waiting room of my neurologist. It is talked about among PWP around the world; it is the major event in Parkinson’s since Levodopa was introduced half a century ago. What was done to the Parkinson’s volunteers by Amgen was WRONG. And the fact that hardly anyone above the level of critically ill patient is aware of that is stunning. Everyone else from nurse to doctor to scientist just seems to dismiss it as ignorant complaint. Ignorant we may be; I was absent the day they taught science in school; but there is still a problem that the Parkinson’s industry seems unable to grasp: the patients in the PD waiting room talk about it among themselves, and what they say is that it was WRONG. This is an important point. Everyone has tried to maintain silence about it for the past 6 years, expecting that the story would go away as the older PWP die off. But, before disappearing, the older patients are passing the story on to the Newbies, warning them to watch out. It is a wound that has not even begun to heal.
We want your research to be successful; we would be overjoyed if it relieves the suffering we see everyday in fellow PWP. But I have to tell you, just seeing the name “Amgen” in the same sentence as “GDNF” gives us nausea that is not caused by Parkinson’s, or by Mirapex, Selegiline or Levodopa. The memory of what was done to those volunteers circulates from patient to patient, year after year, and it a major unrecognized problem. There are people who would rather die than allow anything from Amgen into their lives. The stain of shame that was poured on to GDNF by Amgen’s treatment of the 48 volunteers is a very difficult legacy to overcome.
None of that is your fault, of course. We hope that if your research works, some company will buy the rights from Amgen - give Amgen a few billion dollars, rewarding their reprehensible conduct; but freeing GDNF from the stigma of Amgen’s malfeasance. And, in addition, someone, sometime, is going to have to recognize that the sentence “This research was possible with the generous donation of GDNF from Amgen.” must be changed to “This research was made possible by the generosity and courage of the 48 volunteers, who were treated like pawns on a chessboard”. If there is no recognition of the contribution that was made by those people, and if there is no awareness that what was done to them was WRONG and should never be done again, the stain of shame that Amgen poured over the whole process will never wash away by itself.
Holographic message from President Dawson
(play tape of applause here)
Fellow Conspiracy agents:
I have been following the situation (hidden cameras in every office) and although normally I would have to fire hundreds of you for interrupting the music and dance and love of Beauty that is a Constitutional requirement, you were correct in your invocation of the Notwithstanding Clause to release suppressed documents. Fortunately you only got as far as the letter “A”; what is hidden in the files marked “B” and “U” would disturb social peace and global stability.
You now understand why these documents are unconstitutional and kept locked up. They open the door to a Parkinson’s version of hell that makes you feel like Marlon Brando when he whispered, hoarsely, “the horror, the horror, the horror”. In that charred wasteland of manipulation and deceit, there is no hope and little humanity, just rock and no water and the sandy soil; where survival depends on fighting off the onslaughts of the hidden high priests of the Church of Unethical Research, where reptilian predator lawyers patrol the swamps looking for easy prey, where life-and-death decisions are made without the presence or awareness of the people whose life and death it is; where brave volunteers, offering up their living bodies to be sliced and diced, find out that their great courage was squandered, and the memory of their existence was somehow deleted from history.
Let us close the door on that twisted world, that cold and stony and lonely landscape of bitterness and anger and betrayal and despair. That is so far from being a place of healing, you wonder if they know the difference. You wonder what exactly they think they are doing. Spray disinfectant, take a shower, close that door, and pile some furniture up against it.
We must return again to the Prime Directive. We must return to the places where angels pour out their mercy on all these wounded hearts. The place where life is worth living, as hard as it may be.
One such place is Anuket singing in the forest. An antidote for the poisonous atmosphere of Dante’s Inferno, the depths of hell from which we just escaped.
There is one kind favour I ask of you: pass it on. The whole thing. The 48 volunteers, Anuket singing, the whole thing. Why should all of this be a secret guarded by People With Parkinson’s? Why not let the “general population” have access to the information as well? Because today it is us; any day it could be them. Once the predators get a taste, they will be back. And the “general population” has long since forgotten what it was that defeated the sabre tooth tigers. It was music and dance and a burning desire to stop creatures from killing the ones that we love.
Oh, and by the way, I didn’t get very far crossing the desert on foot, before a group of Nubian warriors caught up with me. They gave me food, water, and a camel.
THE MYSTERIOUS ANUKET SINGS FOR US
Final e-mails in the “A” files: Bob said: Anuket, I was walking in the forest on my land, struggling, shaking, trying to surf a black wave. And I heard you singing in my head. And the forest became more beautiful. And I stopped shaking. And that was the help I needed at that precise moment. Thank you for your songs. I did not summon up your music when walking in the forest; your music came to me at that moment without me expecting it. I did not even know my brain had recorded your singing and was ready to replay it to me in the middle of the forest. By sending out beauty to the world, not even knowing where it would go, you placed the memory there.
Anuket: Bob, when there is a black wave, talk. I will listen.
Bob: Mysterious Anuket, would you sing me a song and allow me to put it on the internet? Please.
You may choose which song we will shoot into the sky with a bow and arrow. Your music already resonates in the forest; I did not choose it, it chose me, when I was walking through the forest and everything seemed impossible. Sing a song for me. Please. It would mean a lot to me.
YES! YES! YES! YES!
Anuket sang TWO songs for us. Moments such as this are sacred and holy. Pay close attention; this is the everyday machinery of the universe combining elements that are the basic ingredients of miracles. Many people have learned a remarkable skill: many people have learned to see with the heart.
All images are images of Bob & Ursula’s land. This is the forest where Bob goes walking at or before sunrise; the forest that provides the firewood that is the only heat we have in the house, the forest where you go to find out what condition your condition is in: can you walk in the forest for an hour and wash your face in the stream? If you can do that, you know it is a good day to be alive. We know, we all know, what is right and true and beautiful and worth living.
Listen to Anuket’s songs that resonate in my forest; watch Sören’s images of the forest, that he combined with Anuket’s singing; and let your heart and mind and soul return from the miserable depths we have seen, and recover our spirits once again. It is a daily requirement.
All the oil paintings and photos are by Sören Dawson.
All vocals, all vocal harmonies, and all instrumentation are by The Mysterious Anuket.