Hello everyone,

I feel a little guilty, as I'm one of those forum lurkers, never posting until today, but reading and monitoring posts for a couple of years now. I don't have PD (at least, not yet, our neurologist says if we all lived long enough, we'd all get it) but my husband was diagnosed with young onset two years ago this month. I hope I am not intruding into an exclusive community by posting here, and if I am, let me know. I just wanted to share that my husband is going to see the doctor mentioned in another post (Izor) who is doing something similar to this at the end of March. Hopefully he will let us try the electrical acupunture that his practice has just started experimenting with for PD. I will let everyone know how that goes. We are all for any sympomatic relief that does not require prescription drugs as those have, as yet, given us as bad a side effects as the various disease symptoms itself.

We have been interested in mucuna for a long time since we knew sinemet was inevitable, but like most wanted to minimize how much we had to take to be functional. My husband still works every day, and the sinemet was a huge disappointment to us. We had read so much about that "honeymoon" but never got it. My husband found that if he ate ANYTHING at all, the sinemet was barely effective (of course, the side effects were still 100%! Odd how that works, you get greatly reduced sympomatic relief, but with all the cons of the med...). And not eating all day wreaks havoc with your blood sugar, which the brain needs to function properly, it's a horrible cycle. He could only go a few days without eating all day until dinnertime, and was miserable. So we went cold turkey (not a wise move, I have since learned) and got off sinemet, mirapex, and azilect on a saturday day, switching over the mucuna.

The first day my husband felt great, the second day, good but not as great, and the third, not good. We think he might have been on his "off med" honeymoon. By Tuesday, he was in pretty bad shape, and had one of the worst nights of his life (he also has RLS, we have learned). So on Wednesday he switched back to the sinemet out of desperation (he takes 100/25 three times a day). My husband found the following benefits to mucuna, in the short trial he did:

-faster onset
-smoother onset
-helped with his tremors more than sinemet (he is tremor dominant)

The disadvantages were these:

-impossible to be taking at work where he has told no one of his situation
-variable effect since there is no carbidopa to maximize the benefit and even the most benign of liquids seemed to minimize the effect of the mucuna
-messy-powder spilling all over when those hands are shaking!
-Rick is right-that stuff STAINS like you wouldn't believe, so you really have to be careful mixing it up

We are going to ask our neuro for an Rx for lodosyn which I understand is plain carbidopa, together with the dosage to combine it with the mucuna. Then we'll experiment with that combo, if our doc will prescribe it for us, and see how it goes. I am also going to try to find mucuna tablets or capsules, to see if they are as good or better than that powder-I agree with other posters, it just is not practical to be trying to mix those elixirs throughout the day, especially under your desk! I don't know why the Zandopa folks don't package their mucuna in a capsule, it would be so much easier for everyone. We would actually be willing to pay a little extra if they would! Maybe they're forum lurkers too and will read this and change their packaging.....

I'm very grateful for all the posts we have gotten the benefit of the last few years, you are a great group of people and this forum a wonderful community.
I am very optimistic about the future for those afflicted with this horrible disease, and their families, as we all suffer, just in different ways.

Every day is a gift, may yours be a great one!