I saw in soccertese's and Fiona's post mention of hypnosis.
Three years ago I became a certified hypnothearpist. Something that I never thought I would do. Why you might ask? Because playing with self-hypnosis I found I could escape some of the aches, pains, tremor, and even gait issues to some extent. What I found though is I could not concentrate enough and still hypnotize myself.
I met and talked with a very good hypnothearpist later on and his father had PD. He used to hypnotize his father on a regular basis to help with the PD symptoms. I asked if he could try trancing me. While I didn't think anything had happened he assured me that I did in fact go under. Well, on my way home I noticed for the first time in 7 years my right hand and arm were not shaking. My neck and shoulder muscles were loose and relaxed. I felt better than I had in a few years. The next morning, I was back to the same old stuff again. That small brake in the symptoms was enough to encourage me to become certified and try to help others.
Being a PD support group leader, I knew where to find some willing victims, I mean volunteers. I met with 5 of our group members at thier homes. Thier ages ranged from 36 to 93. I explained what had happened to me and what I wanted to try. All 5 agreed to participate. One at a time, as thier appointments came up with thier doctors I had them ask for a complete assesment of thier PD. The following week I started teaching them how to relax and breathe and slowly took them into trance. Once they were able to trance, I began taking them into deep trance and and planting suggestions in thier subconcious. Things like " there is nothing wrong with you arms or legs, there is no reason for them to shake". "There is nothing wrong with your gait, there is no reason you can not walk normal".
It may be hard believe but we saw dramatic changes in tremor and gaits. I continued trancing them once a week for the next 6 months and thier next appointment with thier doctor. 4 of the five had major changes in thier assesments. The 5th had some improvement. None of the improvements were permanent. However, the spirits of these five people were greatly improved because they were getting a rest from the symptoms.
Hypnosis can help in my opinion. Oh by the way, I did not charge anything for hypnotizing them but I feel we all gained alot from the experience.

I in no way shape or form suggest you go off of your medication or quit seeing your doctor.

GregD

[QUote The following week I started teaching them how to relax and breathe and slowly took them into trance. Once they were able to trance, I began taking them into deep trance and and planting suggestions in thier subconcious. Things like " there is nothing wrong with you arms or legs, there is no reason for them to shake". "There is nothing wrong with your gait, there is no reason you can not walk normal".
It may be hard believe but we saw dramatic changes in tremor and gaits. I continued trancing them once a week for the next 6 months and thier next appointment with thier doctor. 4 of the five had major changes in thier assesments. The 5th had some improvement. None of the improvements were permanent. However, the spirits of these five people were greatly improved because they were getting a rest from the symptoms.
Hypnosis can help in my opinion. Oh by the way, I did not charge anything for hypnotizing them but I feel we all gained alot from the experience.

I in no way shape or form suggest you go off of your medication or quit seeing your doctor.

GregD[/QUOTE]

Greg, I am at a loss for words. Replace "hypnosis" with "dance" and you've nailed down the only thing I know. A friend bombarded me with the Blues, and i deal with breathing and talk to myself, and if I am not too screwed up I go to a place I call The Zone, and in the Zone there is no Parkinson's Disease, because the part of the brain that handles music and dance is not the same part that handles walking or holding a spoon.
I decided at one point to be my own clinical study, and I put earphones on during the day, and left music on while i slept, listening to music at leasts 20 hours each day (while continuing to work, drive car, etc. and I did that seven days a week, for FIVE YEARS. That`s why I often talk in song lyrics..... it did not cure Parkinson`s, but man, man, man.... there were moments when I don`t think I ever felt that good before in my entire life.
Is there a doctor in the house... errrr whassup, doc

"BUT I AM NOT RECOMMENDING ANYTHING - I am just giving my experience."
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"No, I had never heard of PD when I was diagnosed. I was just giving an example with the med students about one way the brain can work.

Now the question about Sinemet - actually it is inescapably complex. One reason people take it is because they are not presented with alternatives - and you are right, few have been developed in terms of pills. Let me point your attention to one of my mainstay info go-to's, a patent application made by some enormously prestigious doctors/researchers for the use of Mucuna Pruriens as a far superior alternative to Sinemet. http://www.freshpatents.com/Pharmace...0060165822.php
This is a commercial document to be sure, but then most studies are, in essence, these days. I find the research voice authoritative and compelling, the scientfic qualities impressive and elegantly put forward. I particularly direct your attention to Sections [0017] and [0027]. Now this is a plant - but I feel like if a drug company could design a product with these attributes, it would be heralded as a major breakthrough. But have you ever received information about this? By the way, you can get it at Vitamin Shoppe, amongst other places."

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fiona, you can't have it both ways, you state sinemet is toxic, addicting and praise mucuna. yet there is absolutely no definitive evidence that sinemet is toxic, they have done toxicology studies on it.

i read the study, 8 patients were in the trial. http://jnnp.bmj.com/content/75/12/1672.abstract written in 2003
Conclusions: The rapid onset of action and longer on time without concomitant increase in dyskinesias on mucuna seed powder formulation suggest that this natural source of l-dopa might possess advantages over conventional l-dopa preparations in the long term management of PD. Assessment of long term efficacy and tolerability in a randomised, controlled study is warranted.


"0128] On an interpatient mean basis the duration of full "on"-status was 37 minutes (22%) longer on 30 g Mucuna compared with LD/DC. This difference was significant (p=0.021). The duration on 15 g mucuna was somewhat shorter than with LD/DC; by 20 minutes (12%). This difference was not significant supported by the normalized intrapatient evaluation (mean of % difference in individual patients) in which 15 g Mucuna reached 99% of the "on" time duration time of LD/DC. Although a difference in UPDRS scores at baseline reached significance for 30 g Mucuna versus LD/DC in the mean interpatient analysis, best UPDRS motor scores and tapping speed (BRAIN) when "on" did not differ significantly among the three study drugs. "

--- 20min. less on time with 15mg of mucana. they are comparing apples to oranges, you increase on time with more mucana, you can do the same with sinemet cr or possibly increasing the regular sinemet dose.

"In spite of the significant differences in LD plasma levels, both the inter- and intrapatient DMI values did not differ significantly, but a dose dependent reduction in index values for Mucuna compared with LD/DC was recorded. Whether this reduction has a clinical basis needs to be further evaluated in view of the results with AIMS and Goetz. "

this study seems to be a good start but it basically tells me mucana might be as good as sinemet.
i was in a phase3 clinical study for sumanirole, a dopamine agonist. the trial tested it against requip and patients were allowed to dose up to the most effective dose which this small study couldn't. this study showed mucana works, imho it didn't show it was better than sinemet.
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btw,
i am trying mucuna, purchased it from bazaar of india, they call it kapi kacchu, it comes in 8oz bags.
the bags have the name vadik herbs on them and the website www.vadikherbs.com which i just found out is bazaar of india website

trying 1tbsp, not very scientific

[QUOTE=soccertese;.....not very scientific[/QUOTE]

Uh huh. Ol' Soccertese ain't very scientific.

Soccertese, that altogether is like the finest choreography; entrance stage right, Shakespearean. I am privileged to have witnessed your own very personal method of teaching.
You know what it's like - when you have to go back three times to read it again, thinking, "Wow!"

boy, you and i seem to think quite differently. i feel more like i'm grading lab projects

Ok, Soccertese, let me know how you like the mucuna. I think there are many reasons for it being preferable.

Bob Dawson, is there a way to converse with you away from this thread? PM me if so....

That's exactly why we paid the head-hunters to find you

you mean that funny little guy from borneo that wanted my hat size?

Greg, what a wonderful post and thanks for the great info. Very interesting...I am formulating some questions....

Robert -

I can tend to be direct, passionate, cynical, and somewhat sarcarstic..I call them as I see them, so please dont you, or anyone else, take offense to anything I write here, because it isnt directed towards you..It is directed at my frustration with the situation as I see it and experience it

I am not a pharmasist or a doctor, so all I have is my experience, my gut feelings, and my neuro's advice, and direction

I am going to start off by repeating what my neuro told me about dyskinesia, wearing off periods, and going through phases of not being comfortable standing up, sitting down, laying down, or in any position whatsoever, and wanting to jump out of my skin, and found myself in a mental state where I no longer fear death, and if Stalevo gives me a heart attack, I hope it is a good one

My neuro told me that the reason why I get dyskinetic and unbearably uncomfortable is because I have reached the point where the sinemet/stalevo are irritating my receptors, and the amatadine is supposed to calm the waters, so to speak..I take 300 mgs of amantadine daily, and I dont even know if its working, but I am afraid not to take it, because if it is working, I dont want to find out what it feels like if I were to stop taking it

So, with this information, combined with my neuro's direction and advice, my personal experience, and the shared experiences of others, I have arrived at the following conclusions....

If it is true that sinemet/stalevo is the cause of dyskinesia, then the more of this stuff I take, the worst the dyskinesia is going to get..No?..Then the worse the wearing off periods will become, and the more uncomfortale it is going to make me

At 6:00 every evening, my stalevo wears off for the day..I start getting dyskenisia, and then that uncomfortable feeling sets in, and radiates off my body, somewhat like what novacaine does on my teeth and gums in the dentists chair, and my body becomes rigid and weak..Then at around midnight, my body begins to relax, I can walk without shuffling, and I begin to feel comfortable again..Stalevo makes my urine very dark yellow when it is in my system..At midnight, after the wearing off period is over, and when my body snaps out of it, my urine is its normal color..This process repeats itself, in the same manner everyday like clockwork..After I experience this every single day, day after day, after a while I have to believe that the sinemet/stalevo that began as a blessing, has now become a blessing wrapped up in a curse

On more than one night I stayed up, with insomnia untill 3:00, 4:00, and 5:00 am, and was still feeling reasonably comfortable, and was able to walk around the house with a minimal of shuffling, but no matter what time I finally get to sleep or wake up, if I dont take my meds immediately, in the morning, I cannot function..Why is it that my body can function after midnight, but when its time for my morning dose of meds I cant function without them?.Is it pd, or is it a dependant reaction of addiction?

Another problem..When I wear off in the evening, why is it a smoother transition..(if you want to call it smooth)..than if I take my second or third dose too late..When I wear off inbetween doses, I cant even talk sometimes, nevermind walk..Is it because my body is addicted to sinemet/stalevo, and has built up a dependance?..Or is it a cooincidence, or a calculated figment of my imagination?..No offense intended

In my honest opinion, when the drugs I take start to cause as many symptoms as they treat, then something is seriously wrong with that drug

Call me cynical, but I dont trust corporate America to treat pd, and I am certain they arent going to cure it either..Amgen-gate got that message out loud and clear..It is more profitable to treat the symptoms, of a long term illness like pd with pills, and the pharma co's line the political machine's deep pockets with campaign donations to insure that this horse and pony show continues..It is not in their best financial interest, to cure pd..Stem cell research is a political ping pong ball, that always seems to pong more often than it pings..On the subject of stem cell research funds and donations..who benefits from that?..Not me..Not yet..One political party suppports it but ties one hand behind its back, and the other party ties the other hand, and both legs together..One step foward, and three steps backward..Seems like an exercise in futility, but the money keeps on rolling in to ride the Capital Hill merry-go-round

The way I see it, is if I dont start thinking outside of the box, nobody is going to do it for me

Ive gotten desperate at times, and seriously thought about DBS surgery, as a matter of fact, I was going to a DBS support group for a while, gathering info, talking to surgeons, programers, and PWP who have has successful results, some results, tragical results, and no results..And those who had not so good outcomes, ask the neuro surgeon why....He says he doesnt know why..Sometimes it is a misplaced lead/s..So they go inside again and move them..Sometimes it works, sometimes it doesnt..That tells me that DBS might be a blessing for me, and it might be a crap shoot..Having said that..I am not ready to roll the dice

So what does one do?..Since Nov of 2004, it just so happens that every time Ive seen my neuro, except for one, my meds were working.."You're doing good he says..See you in 6 months"

He doesnt see what happens to me when my meds wear off unexpectedly, or dont kick in at all..The one time he did see me in a mess, he took me off of sinemet CR and put me on stalevo..Now the tough times are tougher..I dont blame him..He doesnt feel what Im feeling..He cant live my life, and I cant give him my pain, so he can feel it too..He can only go as far as his his knowledge, experiences, and as the boundaries of the law allow him to

So I guess that drives some of us parkis to committ "medical civil disobedience", and take our health into our own hands