Hi I talked to you all a few months ago when i decided to go off all my P.D.medication ...Madapar and Tasma and try the mucuna approach .After spending a lot of time reading what you all had to say about mucuna and against my neuroligist's wishes i tried it .I am pleased to say that i have been on it for 7 months now .I have not taken a madapar or tasma tablet in all that time .I decidsed to try the mucuna as i had so much dyskenesia that i felt uncomfortable in my body and did not want people to see me with it.i had been on the parkinson medication for 3 years and the dysk started about the beginning of the 3rd year .i feel great on the mucuna my off times are not as bad as when i was on the p.d medication and i have very little dyskenisia when i do it is because i have taken a little too much .I just wanted to say that this forum is great for information and i have learnt so much by reading all your posts .. .I live in Tasmania Australia i am 53 and have had p.d for 5 years and i do not know anyone that i can talk to who has p.d so it is great to be able to read how others cope .talk soon

Sue W

did you titrate one medication at a time?
was it an extremely hard experience?
well done!

Welcome Sue....a voice from another corner of the world...always welcome.

I have been dabbling in the Mucuna and keeping tabs on what Max is up to. I have been very cautious of it since I had my little moment of "revelation" regarding it's effects on libido. (which a few of you confirmed...thank you for that). I take 1/4 to 1/2 tsp in water every second day. The effect is subtle but it is there. I sleep better and my days run smoother. I suspect it has properties that are not documented and possibly even unknown to "modern" science. I am interested in Ricks comment about taking it with the sinemet, and finding that the two may be at odds with each other. Mucuna is a force to be reckoned with. CS,: speaking in laymans terms are you saying dyskinesia is caused by the conversion of l-dopa to dopamine on this side of the BBB? My experience is that sinemet actually activates my tremor...most notably in the morning. Exactly 32 minutes from the time I put that first dose of sinemet in my mouth my tremor kicks in. I then have to get up and get moving to channel the medication into the brain. If I just sit there my tremor gets worse and worse and meds don't kick in (what an appropriate term "kick in" is ) until 1hr+ 45 min later. Its as if the whole dose gets side tracked into my blood stream and goes directly to other parts of my body. In extreme cases, I suffer a meltdown where my tremor goes absolutley crazy and the adrenaline in my system surges through me,and I look and feel like a junkie going through withdrawl. Women tend to be more prone to this type of response, I suspect because of their hormonal makeup.
Hot Flashes are exacerbated by PD. Well, the positive side is it keeps the weight off our butts. Who needs exercise if you can just shake it off!

So many questions...so few answers.

I notice that Sue has had good results by switching completely. When I get careless mixing it with sinemet I get dk and when I do so with requip I experience the "rosebud effect". I have been trying to control both by careful titration but maybe switching completely would be better.

thank you so much for sharing your experience. dose is the big question. can you tell us how much mucuna you are taking? any side effects?
I am 65 ..dianosed since 2 years .. I take a tea spoon of mucuna twice daily .. I have typical but not severe tremor .. I do not have a yard stick of how much mucuna is helping if at all !

Hi imark


I am taking 1gram 3 times a DAY if i go out at night i might take another dose in the evening .I stopped my medication that i was prescribed by my neurologist one day and the next day i tried the Mucuna and i haver not loked back .originally i bought it locally but it was black tack that was unrefined it had bits of shell etc in it.I took this for 3 months but it made me nauseous because it was so horrible to take ...but still worked well just revolting .Then i found a web site with pure L-dopa extract and it was a fine powder that i only needed to take 1 gram ,with the other i took about 10 grams 3 times a day. this other fine powder is more concentrated and it is always the same grade where as with the other i could never judge what to take Each batch was different .I have not had a madapor I dont know if you have madapor over there i live in Australia, Tasmania.i am 53 years old and have had p.d for 5 years .the reason i wanted to try the mucuna was because of the dyskenisia that i had .now i have no dysk only if i9 take too much .i have given you the web address .i hope you have as much sucess as i had.the only thing i have not got a neurologist now he did not approve of me trying it.But we are the ones with the disease and know how our bodies feel i just feel that for me i felyt more normal on the mucuna not as rigid and stiff and when i am off i am not as bad as when i was off on the traditional. p.d.medication .i hope that this helps

sue


http://www.global-supplements.com



forgot to say that i put the powder in empty ggelatine capsules makes it easier when out and more convenient


i

hi CtenaLouise

It was not too hard the first dose i knew that it was going to work I was a bit aprehensive because i did it without my doctors approval .but i am so glad i did it ..before i tried the mucuna my joints wrists ankles etc were so sore from all the extra wriggling .i still have good days and not so good days but nothing like before on my other medication.My family and friends cant believe as to how much better i am .i feel that i was ok for about 18 months to 2 years on my P.D medication until i got all the dyskenesia .then the rot set in

good luck in whatever you try hope this helps

sue

Hi Rosebud I have had no change in my libido actually i was hopeing i would but it did not happen and i have been on it a while .i found that the mucuna kicked in a lot sooner than the other medication .i get up at 7 and by 7.30 i feel pretty good .i seem to be better in the mornings i usually get between 4 to 6 hours out of the mucuna i will not take a dose any less than 5 hours between i am better when i am off on the mucuna than the regular medication that i was taking .hope that i have not rambled and you can understand what i did .all the best in whatever you try


sue

hi Reverett123 .hope if you try just the mucuna that you have sucess with it

all the best

sue