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08-07-2008, 11:45 AM | #31 | |||
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Dear bluedahlia: please don't be offended by my opinion. It is merely and only that...an opinion. We each see life through the prism of our own experience. "Judging" others is my last intent, and who am I anyway that my words can carry such weight in another persons life. You are right of course ...they could have put a little sticky label on the bottle. I my case, my Neuro warned me and monitors me. "forgive us our trespasses as we forgive those who trespass against us"....
Joy Quote:
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I would never die for my beliefs because I might be wrong. Bertrand Russell |
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08-07-2008, 02:10 PM | #32 | |||
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No worries. I agree with "We each see life through the prism of our own experience."
Take care. |
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"Thanks for this!" says: | lou_lou (08-10-2008) |
08-07-2008, 03:06 PM | #33 | ||
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thanks. Well, I'm on 2 mg for a week, and sleepy, a bit. !! Yikes--24 mg seems like alot! I know, it's all so person-specific. That's good news, though, and great that you're doing so well on it. Thanks. I totally get your analogy,too--what a shame that we have so many bad med's to choose from, though. But what a pleasure to see the Bush/Cheney crowd run out of town, altho' soooo much toxic waste in their wake.....Later, Leonore
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“WHEN I DARE TO BE POWERFUL, TO USE MY STRENGTH IN THE SERVICE OF MY VISION, THEN IT BECOMES LESS AND LESS IMPORTANT WHETHER OR NOT I AM AFRAID.” Audre Lorde: (1934-1992) African American, lesbian-writer/poet/warrior, who gave us the gift of her courage, before cancer stole her away |
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08-07-2008, 04:24 PM | #34 | ||
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Leonore, have a great vacationn, hon.
Rick - that's very interesting about Requip...it's true that every body is different. But the free will versus evil drug thing -my personality totally changed. My behavior was way different than it had ever been. And my doc just saying to me as she prescribed it, "you're gonna be up cleaning closets with this one," was hardly adequate warning for the mental confusion and change that resulted in me. Never a drinker before, I became not an alcoholic, but someone that got into reckless recreational drinking and carousing to the point where I found myself being raped in the back room of a hardcore gay bar. Sorry to have to be so harsh about this stuff, but I'm talking serious personality change and inability to act appropriately. I was not like that before or since, so I take issue I guess finaly with the idea of personal demons - if something does stir up personal demons, then that's very serious side effect, and since they knew about it, we should have been told, too. And at that point when you are that confused, it's hard to just make a decision to just stop it and be different. It causes a sense of mania, which can be hard to recognize and address. I disagree that there are no evil drugs. Drugs that seem to have built into their design addictive properties that ultimately worsen and hasten your condition at the same time that somebody is making tons of money from your being on it forever, when they never warned you that once on it, you couldn't get off of it..........and if not inherently evil in themselves, the way drugs are administered in the US surely is reprehensible. Just how much more expensive they are here - Stalevo cost me 1/8 the price in Colombia, South America. And no, it wasn't a fake. US citizens, I urge you to consider the role of the pharmaceuticals in our society. Once again, we have by far the most expensive health care system in the world, but the worst record of the industrialized nations in preventable deaths - those that could have been prevented by timely and effective care. We are like 42nd in world ranking in life expectancy, and 35th or something in infant mortality. Yet our system costs more than twice as much as any other...Why? Where is all that money going? With all our resources, I think these figures are just shocking, and anybody who doesn't read them and not think that there's a very serious situation - basically we're being totally robbed and at the expense of our health... We need major change and the need for it becomes more obvious daily. That's why hearing about the Mirapex verdict felt like better than dopamine. It felt just a little bit like the people who have been jerking us around (oh, it's the FDA's fault for not making us warn people what we already knew was wrong) - were starting to - just a little bit really so far -to reveal that they've been cynically manipulating the public for years. Now they're finding out that mammograms cause or spread cancer more than they detect it - hello, it doesn't even take a scientist to figure out that something blasting you with radiation 1000x greater than a chest x-ray might be a tad dangerous? Who are you guys feeling sorry for the drug companies trying to protect? They're laughing all the way to the bank. I know it's so disheartening, especially when we need this medication to survive, and we want to believe that it is actually 'medicine,' as the pharmas speciously refer to their products. But it's making us dependent, not more healthy, and the only real chances we've seen out there for a cure have been halted inexplicably in their tracks, others forbidden to pick up the ball, and the key players have 'moved on.' I really think we have to unite and say we're not going to take this crap anymore. Forget about appeasing this organization or foundation or medical institution, or drug company, and say we PWP make public DEMAND that Amgen release the licensing rights on GDNF if they're not going to pursue it, DEMAND that if our nation's top doctors are sitting on a patent on something that they have done research on and already know it's a good thing and already widely available - that we BE TOLD that information. We should be demanding FULL DISCLOSURE of all researchers, names of who did what work for what industry. Finding out that one of the world's best neuros wrote papers for the welding industry so that it could be proven that welders didn't need protection, received a quiet $3 million for that work, and then lo and behold, it seems that he was on the Financial Disclosure Overseeing Body at his hospital.... Why are we taking this lying down?? Where is it getting us?? What do we get - thrown a bone like a new Neupro patch every coupla years? C'mon... We are paying TOP DOLLAR and what are we getting that is so hugely advantageous? To me, that's what taking personal responsibility is - demanding truth, integrity and fairness in the way I am treated. |
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08-07-2008, 06:01 PM | #35 | |||
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Re: Mirapex
The saddest thing for me while I was going through the Mirapex take-down was that I was so sick that I couldn't spend time with my mother who died last October at 87. She was in a assisted care home 270 miles away, lonely for my company as I was hers. I hardly saw her at all the last two years of her life when she needed me the most. I finally made arrangements for a ride to Victoria to surprise her on a Thursday, she died Tuesday, two days before I got there. The appalling behaviour from my health team, one being a neurologist I had been seeing for ten years to suddenly decide I was a difficult patient and didn't know what I was talking about (I kept telling them what was happening to me) was the last thing I expected or needed. He told me that one of the reasons I was picked for the Clinical Drug Trial was because I was an organized, credible person. It was all about his ego. When he saw me after I lost the 25 pounds he had one of his assistants telephone me to tell me that he had empathy for me and realized I had been through a very rough time. I was told to be kind to myself, that the way back was going to be slow and would take a long time. Too little, too late. Interesting enough my GP showed me a warning letter sent out recently from the Movement Disorder Centre, that he heads, warning doctors who were treating patients with pd to be aware of the adverse affect Mirapex had on a certain percent of patients. Too late to prevent what I went through. Bonnie
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"Trust your nervous system" - Timothy Leary Last edited by smithclayriley; 08-08-2008 at 06:55 AM. Reason: personal |
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08-10-2008, 12:04 AM | #36 | ||
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Junior Member
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Arvid Carlsson , swedish winner of the Nobel Prize in Physiology or Medicine 2000
Interview in Nature: Neuroscience: The molecular wake-up call Another side effect of L-dopa treatment is that patients may develop an irrational tendency to gamble. It is now well known that the neural pathways controlling behaviours such as motivation and feelings of reward pivot around dopamine. These pathways drive pursuit of food and sex — and are hijacked by addictive drugs and addictive behaviours such as gambling. In the 1960s, Carlsson was among the first to spot that drugs of abuse work by boosting dopamine transmission in particular brain areas. Too little dopamine in one area produces Parkinson's, too much dopamine in others can cause psychoses. Nature 447, 368-370 (24 May 2007) Nobel Lecture in December 8, 2000, at hall Adam, Karolinska Institutet, Stockholm. “A Half-Century of Neurotransmitter Research: Impact on Neurology and Psychiatry” The whole lecture is great, and among all, a scheme of repartitition of dopamine, norepinephrin and acetyl-choline in brain dated of 1966. As PubMed gives evidence-based demonstration.. first works about role of dopamine in reward circuitries, addiction and compulsive disorders were held in the late 60's -early 70's Ernst AM, Smelik PG. Site of action of dopamine and apomorphine on compulsive gnawing behaviour in rats. Experientia. 1966 Dec 15;22(12):837-8. Snyder SH, Taylor KM, Coyle JT, Meyerhoff JL. The role of brain dopamine in behavioral regulation and the actions of psychotropic drugs. Am J Psychiatry. 1970 Aug;127(2):199-207 Stein L. Neurochemistry of reward and punishment: some implications for the etiology of schizophrenia. J Psychiatr Res. 1971 Aug;8(3):345-61 Lippa AS, Antelman SM, Fisher AE, Canfield DR. Neurochemical mediation of reward: a significant role for dopamine? Pharmacol Biochem Behav. 1973 As for hypersexuality Andy OJ, Velamati S. Temporal lobe seizures and hypersexuality. Dopaminergic effects. Appl Neurophysiol. 1978;41(1-4):13-28. ] Vogel HP, Schiffter R. Hypersexuality--a complication of dopaminergic therapy in Parkinson's disease. Pharmacopsychiatria. 1983 Jul;16(4):107-10. Uitti RJ, Tanner CM, Rajput AH, Goetz CG, Klawans HL, Thiessen B. Hypersexuality with antiparkinsonian therapy. Clin Neuropharmacol. 1989 Oct;12(5):375-83. .......Other evidences may be found too upon sites selling chemicals tablets or plants with "specials" for people searching for higher resistance for gambling or huuuuuuuuuge sexual performances... And I think to myself.... what a wonderful world........ |
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08-10-2008, 12:18 AM | #37 | ||
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Junior Member
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PRE-EMPTION
If this perverse legal doctrine, known as federal pre-emption, continues to spread, the public will be deprived of a vital tool for policing companies and unearthing documents that reveal their machinations........... The Dangers in Pre-emption , N.Y.Times April 14, 2008 http://www.nytimes.com/2008/04/06/wa...ml?ref=opinion http://www.nytimes.com/2008/04/14/op...in&oref=slogin http://content.nejm.org/cgi/content/full/358/18/1883 http://www.duanemorris.com/alerts/alert2812.html Yes I think to myself .......what a wonderful world.... Anne. |
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08-29-2008, 04:34 AM | #38 | |||
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In Remembrance
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MIRAPEX sucks!
even though many were hurt and killed because of Mirapex -most patients usually do not know they have been put on a bad trippin drug - because the doctors whom they trusted, did give them a prescription! and the drug companies who hid hid the "real clinical study findings" are all part of the problem truth in labeling means nothing to a board of directors who invested in this drug! they are giving it to highschool kids for restless leg syndrome...
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with much love, lou_lou . . by . , on Flickr pd documentary - part 2 and 3 . . Resolve to be tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant with the weak and the wrong. Sometime in your life you will have been all of these. |
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08-29-2008, 10:00 PM | #39 | ||
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Junior Member
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I have also been on Requip since dx in 2000. 30 mg daily with "good" tolerance. I have also maxed out on sinemet. I want to eliminate requip as an unneeded drug that I just got "hooked" on unless someone comes up with a good reason why I need it. |
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09-02-2008, 11:48 AM | #40 | ||
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Hello - I am sitting here in the dark pondering my failing marriage, my various addictions (gambling, sex on line, baseball cards??, fishing, etc). I am scared and do not know where to turn - except to demand of my Dr. that i be taken off of mirapex and hope that i can start to rebuild my life...
Oh, how rude of me.... I am Dave, 46 yrs old and have been on mirapex for years... Quote:
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