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07-04-2008, 06:10 AM | #51 | ||
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Wow, what a lot to say in this one - how great. I think we at least should start a comedy team - you guys are a total laff riot - spinning last night with dreams of guys on all fours in 4-inch stilettos and -oh, no, it was just my neo-burlesque performance art pals in NY.... -or hard to tell the difference.
Max, I'm sorry about your breakup. That's rough, dood. Hope you're weathering it ok... Rosebud, about your frustration about mucuna not even being considered as a viable alternative....Well, over the last couple of months, I've come to a very sad conclusion which is that nobody in the mainstream is really interested in curing or even significantly helping us. This is a little negative, so Paula or whoever, else, please argue me down from this. But especially after reading more in depth about the Amgen trial - I was so disgusted by what happened. That was the closest thing then or for the foreseeable future that seemed like it would really help, and they not only killed it for very dubious reasons, but that statement by the company exec, I think it was who said that they discontinued it in part because we didn't have the many neurogsurgical sites that would be required to deliver it to all those that wanted it, and therefore it wouldn't be a major moneymaker for the company - excuse me, you guys couldn't have done a little counting of facilities available that would be required to deliver this kind of treatment before you actually embarked on a very expensive clinical treatment and implanted all this surgical equipment in people and gave them brain surgery, etc??? Beyond belief. Similar to but worse than suddenly withdrawing Neupro because they forgot to put it in the fridge. Are these people accountable to anyone for the havoc they create???? And then the fact that Amgen refuses to let anyone else license the one most probable hope that we had......So now I am convinced that they do not want us cured. The prescription drugs we have available are good to help symptoms for a short amount of time before they start destroying the body as much as they help it. And bascically we are abandoned with them.... SO what to do. I'm looking at every means possible. I know mucuna is still a 'drug' but it is also more purely a plant, has an internal nexus at work of its own coherence, which our attempts to make into another pill product with profit at the heart of its intention, may denature and then render it either harmful or irrelevant. I think there is no real healing intention in the Parkinson's establishment, otherwise these obviously hepful things like Mucuna and GDNF would be taken seriously at least, along with all this other....stuff. But I'm on the trail of a couple of other things that have come up in our discussions and will report when ready. Meanwhile, I don't know if I can really accomplish healing in the United States where we swim in this toxic soup of chemicals, prescriptions intended to keep us totally dependent, etc., and a medical environment which at least for us really does not have healing at its heart. They give us dire, horrifying expectations right from the start without allowing any possible positive visions for our futures. Their core intention behind the treatments they give us as maximizing profits for their shareholders. No wonder we don't get well. There's gotta be a better way, and I don't have time for them to diddle around with their second phase trials which then get halted and killed forever because, at best, they didn't do their homework. This is my life and it's going by, and I think I may be headed for other shores soon to try and save it, and as many others as I can. But it might have to be kind of an underground thing or shall I say not accepted fully by the medical establishment. But if I get anywhere at all, I promise not to leave any of you behind.... Sorry, guys - not exactly a laff riot this am. But I have SO enjoyed all the fun and wit - proof to me that we are very much salvageable and have great life energy beneath our suffering. |
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"Thanks for this!" says: | imark3000 (07-04-2008) |
07-04-2008, 07:16 AM | #52 | |||
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In Remembrance
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Yes, aphrodisiacs are very much gender specific. That has been known since 1923 when it was found that tap water was effective in males but not females (unless it was used by the former for bathing).
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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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07-04-2008, 08:59 AM | #53 | ||
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In Remembrance
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I suppose air is an aphrodisiac for men but only for women after males have breathed it?
No way! That would only apply with Brad Pitt. paula
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paula "Time is not neutral for those who have pd or for those who will get it." |
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07-04-2008, 09:12 AM | #54 | |||
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In Remembrance
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The editors wish to make it clear that the effect on the female subjects was only noted when the males had bathed and were clean and well groomed. The females had no direct contact with the water.
<An interesting footnote to the history of science is that this observation led to the principle in quantum physics of non-locality.>
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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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07-04-2008, 09:25 AM | #55 | |||
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r123, OK you got me............ Did you ever consider writing as a career choice, your pretty good. And........... I don't want to gush or your head to swell so I'll stop at And.
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"Trust your nervous system" - Timothy Leary |
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07-04-2008, 09:26 AM | #56 | ||
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In Remembrance
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Ok thanks. I've already referred to the pancakes as hotdogs so the fog hasn't cleared yet this morning.
paula
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paula "Time is not neutral for those who have pd or for those who will get it." |
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07-04-2008, 10:13 AM | #57 | |||
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mucuna causes hyper-sexuality iin men.
So whats the problem?? Chas |
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07-04-2008, 10:48 AM | #58 | |||
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Quote:
Bonnie
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"Trust your nervous system" - Timothy Leary |
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07-04-2008, 11:10 AM | #59 | |||
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haven't we been a busy bunch early this morning!
I have to agree with Fiona, it's pretty clear from what we have come to know collectively is that no-one has an interest in curing us, but at least on the other side of the culture coin where folk medicine etc is still practiced there are people who care and take healing seriously and as a higher art. Makes you rethink the meaning of "witch-doctor", I'm not ready to turn in my Pharmacare card yet (that's what the govt drug program is called in Canada) but its value is certainly diminished as I am learning more and more about how things really are. On the one hand they won't cover my Comptan -which may be a blessing in the long term, but... on the other hand, I am finding value in a much less toxic form -an old folk medicine that the "uneducated and backward" have to offer that actually works. Hmmm I just took my mucana with my oatmeal, milk and raisens. It's a good thing I have little in the way of taste buds, because its a "unique" flavor. Evan at a distance Oh just a small observation, I slept last night without my usual sleep aide... I woke to find it still next to my water bottle this a.m. could that have anything to do with the mucuna in my system? I have to go to the bank this morning...it's very close to my favorite shoe store. This will be a bit of a test too...
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I would never die for my beliefs because I might be wrong. Bertrand Russell |
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07-04-2008, 11:43 AM | #60 | ||
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also, today's thoughts on shirt talk ... perhaps we ought pay homage to the plant's full nomenclature. ..mucuna pruriens - which supposedly refers to the severe itching caused by contact with the filaments on the mature bean pods. Humpfh............. as above, so below? Happy Independence DAY all - and may we someday regain our independence from any and all drugs - no matter what! ibby |
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"Thanks for this!" says: | paula_w (07-04-2008) |
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