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07-02-2010, 07:02 PM | #11 | |||
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Junior Member
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**Quote A book about dopamine-enhancing drugs and supplements is available for free on this website. This book, The Medications of Parkinson’s or Once Upon A Pill, explains how and at what rates the medications work, the lasting brain damage that they can cause, including irreversible drug-induced parkinsonism, and the safest techniques for reducing dosages of medications that have become ineffective due to addiction or that are causing adverse effects due to excessive dosage. This book is based on a four year-research project. Im sharing so play nice. Have your own opinion sure, state it politely always be aware no one has all the answers Jak |
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07-03-2010, 12:00 AM | #12 | ||
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Magnate
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there was a message board devoted to pdrecovery, if my memory serves me correctly, everyone suffered greatly as they tapered off their meds and noone "recovered" in the slightest. http://content.nejm.org/cgi/content/extract/352/13/1386 http://health.groups.yahoo.com/group...1521?var=1&l=1 |
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07-03-2010, 06:07 AM | #13 | |||
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In Remembrance
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Jak's "extoling of an unproven theory" is far more at home here than somebody copping an attitude. Just a brief look at the archives will show a ton of unproven theories and there aren't any guards at the gates trying to keep them out.
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000. Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well. |
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07-03-2010, 08:25 AM | #14 | ||
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Magnate
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i stated an opinion, you may not like it but i am not censoring anyone. this person posts on this board, states that the 1 drug that gives me decent relief is bad for me, define "bad" for a pd'er, and offers up an alternative treatment that started in the 90's, no independent validation that it works at all and if it did it's been around long enough how could it not be widely adopted since it's a potentially free treatment. you are basically asking me to believe in the tooth fairy. it might exist, it might have a placebo affect for young kids but i stopped believing in her years ago after i learned to read. did you read the posts on that pd recovery message board? every hoping it will start working? i call a spade a spade. |
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07-03-2010, 09:05 AM | #15 | |||
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In Remembrance
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Actually, I was coming back on to apologize for handling that in the way I did and I still will do so. I'm not sure that a better way existed, but things often look different in daylight.
------------------------ Please allow that first paragraph to be an example of a gracious way of greeting the morning, because I'm going to stir the pot now. ------------------------ Quote:
Yes, it has been awhile. I haven't been back lately. One thing positive that I do recall, however, is that it gave people hope and that is no small thing.
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000. Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well. |
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"Thanks for this!" says: | anon72219 (07-03-2010) |
07-03-2010, 09:42 AM | #16 | ||
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Magnate
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[QUOTE=reverett123;671422]Actually, I was coming back on to apologize for handling that in the way I did and I still will do so. I'm not sure that a better way existed, but things often look different in daylight.
------------------------ Please allow that first paragraph to be an example of a gracious way of greeting the morning, because I'm going to stir the pot now. ------------------------ i see your point. what you consider possibly silly i see as downright rude, possibly phony, possibly a prankster and possibly a hidden agenda. he didn't come here politely asking for an opinion on pdrecovery. enuf said, i agree to disagree. btw, i have hope. hope based on fundamental and clinical research. letting someone undertake a multiyear useless procedure because it might give them hope when they could have maybe done very well with a DBS or one of the newer drugs or benefitted from a clinical trial? whether it's foot massage, accupressure, accupuncture, chinese herbs, exercise, ultimately something has to change at the cellular level and i really don't care how that is done as long as the researcher ultimately proves that thru a pet/spect mri rather than endless anonymous anecdotes . |
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07-03-2010, 10:00 AM | #17 | ||
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Magnate
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"would not support censoring an opinion for a second. The sad truth is that for PD, almost all the things that we know are opinion. No one knows cause, course, nor cure. So it can be assumed that anything expressed here is opinion. And BTW, levodopa/carbidopa is a dangerous and addictive drug that should be treated with extreme caution. IMHO of course. "
so is sugar. so is insulin. the DEA does not regulate levodopa. i can read the warnings on the pkg insert. what are you saying, don't take it? make it a scheduled drug? dangerous? how many people die of a levodopa overdose or suffer irreversible side affects? can you imagine having pd and no levodopa? there's a big difference between educated opinion and quackery. what about the risks of a ALA moving metals into your brain rather than out? |
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07-03-2010, 10:25 AM | #18 | |||
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In Remembrance
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I think we will agree more than not. And so you have a better idea of my thoughts:
1) Science is the gold standard when it is allowed to work properly. But with PD external forces and conditions have to be dealt with. 2) One is the force of money. We represent about five billion dollars a year. To pretend that that much cash does not impact things would be naive. It is a factor at every level, too. From my decision between brand and generic. To a scientist's calculation of how to structure a grant proposal. To a department head's decisions that influence a subordinate's tenure. To public funding allocation at NIH. To Big Pharma boardrooms where the discussion is on duty to shareholders, not to welfare of the patient. To the multi-Orgs where staff's first duty is to raise funding for their own salary each year. Each level influences the science. 3) Another is the force of the marginalization of the patient. With few exceptions, nobody cares what we think and they darn well don't want to hear why we think they are wrong. And as individuals, our voices grow weaker each day. 4) Another is the force of academic conformity. Nobody gets tenure because they discover that a blamed foot injury really is the cause of PD. Truth would be irrelevant. 5) Another is the sheer success of science in gathering data over the last forty years coupled with the failure to interpret it. It is like those NASA warehouses of precious lunar orbital data from the 60s left to rot. 6) Finally, there is the fact that the current orthodoxy on PD is dead wrong and time and money are being wasted. PD is not even a neurological disease! It is an immune-endocrine disorder that, with a little help from the GI system, damages the nervous system under the onslaught of environmental insult mediated by genetics and epigenetics. IMHO, of course. You see why they don't invite me to their parties. 4)
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000. Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well. |
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07-03-2010, 11:09 AM | #19 | ||
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Magnate
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please don't put words in my mouth, i don't endorse anything you just posted.
you don't think medtronics wouldn't love to sell a super duper accupressure/electrical stimulator gizmo that you attached to your foot if it reversed pd? they have no skin in the drug game. or chiropracters would be embracing this procedure if there was the slightest hope? you also ignore the european/asian/canadian pd research community which is much more collaborative and accepting of alt. pd research. you think german pd community, in germany naturpathy is huge, wouldn't have embraced this procedure if it worked? i don't think it's nearly as much publish or perish outside the u.s. btw, google exercise and pd., a lot of research. chiropractors have published research. you might think academics don't do that research because it makes no sense? there is a tremendous amount of research in europe/asia on natural supps. you ignored my specific questions and responded with a critique of the u.s. commercial/academic pd community. i don't get it. |
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07-03-2010, 12:20 PM | #20 | |||
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In Remembrance
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Of course, there is always the option of ignoring someone who wants debate but not discussion.
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000. Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well. |
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