stephen,
i might have asked you before but have you seen other mds's or tried other drugs?
there's the extended release requip and mirapex, azilect, selegiline, mucuana.

you live on the other side of the country but seattle has the booth gardner parkinson's center whose neuros have a great reputation.

My apologies to Soccertese. The "list" and, indeed, the whole thread (about PD and inner conflict), was by Reverett123 and not Soccertese. And so I stand corrected and contrite. I'd like to write the error off to PD clognition, but i have to take full responsibility. Mea culpa.

Judith

Ive tried mirapex, an it does do anything to improve my symptoms..requip makes me sick, I cant afford azelict, and my neuro doesnt think selegiline will help me

I have experimented with mucuna..it works, but wears off like a sudden stop..It actually works better than anything Ive tried so far, but when I tried it, I did it out of desperation during a rocky med change, and I really didnt give it a fair chance to see what it can do

There is a MDS who is supposed to be the best in the state, but patients are leaving him because of his bedside manner, and the fact that he doesnt spend much time with his patients..The guy Im seeing spends time with me and communicates well with me..Alot of people in my support group see this MDS and most of them are not happy with him, and I dont see results any better than mine

Greg-
Count me in on any exploring in this area. i have recently gotten serious about it and have had some success with dyskinesia. I am using a "modular" approach by recording a standard induction and wake up and then plugging in a specific script. This way I can turn out a disc within five minutes. And I suspect an advantage to its being in my own voice. Strictly self taught but I inflict myself on no one.
-Rick

my neuro is very good about supplying a constant supply of free samples, just a thought. seems a lot of people who can't tolerate requip can tolerate extended release version. of course if you can't afford it that makes trying it out a tough decision but you could at least contact the manufacturer about getting free or discounted meds if it helped. just throwing out ideas, you seem to be asking for advice.
selegiline gives me better mental clarity, can't say it relieves rigidity or extends on time.

My neuro is good about giving me samples too..Trouble is, if I were to try azelict for example, and it worked, I would have be able to have access to 52 weeks worth of samples, because the Stalevo alone puts me in the doughnut hole in 9 months without samples inbetween..I have also been on some prostate medication that has also been chewing away at the Part D piggy bank as well..I tried to get assistance from Stalevo for some free meds, but was turned down because I dont meet the total household income criteria

So its a catch 22 no matter what moves I make..I am going to try mucuna again when I wean of one dose of Stalevo, and when my system is stable, and predictable..Im also growing fava beans, and plan to try that out, and see what happens..If it doesnt work, then all Ive wasted is, a few dollars and some of my time

My main problems with Sinemet, is it doesnt last long enough, and I had been having too man failed doses..I think my body was metabolizing too much of it before it is able to reach my brain

Stalevo works 95% of the time, with very few failed doses, and is predictable, at the same 600 mgs per day of Sinemet or Sinemet CR that I had been taking previously..I function well on it after it kicks in,..(Comtan blocks some of the receptors that cause Sinemet to metabolize in the body before it crosses the BBB, hence my theory for few failed doses, and predictability) ..but the problem comes at the end of the day when it wears off..There is a four hour transition period, of wearing off, to unmedicated pd..I cant even lay down untill I get through that wearing off period because Im too uncomfortale to fall asleep..I also have a pretty bad vitamin D deficiency, that Im taking suppliments for..I have no idea what that may, or may not be contributing to this situation..and Im getting all kinds of feedback from the doctors that I see..(neuro, gastro, urologist etc)..Maybe its sleep apnea..Maybe its low vitamin D levels..Maybe I need to take 400 mgs of Amantadine everyday instead of 300 mgs..Maybe my receptors are getting irritated, etc, etc, etc

Im thinking, maybe this is just a simple matter of, this is what Stalevo does to me, and maybe this is the price I have to pay for the quality on time that I benefit from it

fiona,
so if you make a statement that i think is factually incorrect i should ignore it because the "big picture" is more important? that's asking a lot. but seriously, do you think i'm going to change?

some of you might remember the battle i had on the old braintalk board with the poster promoting tyrosine/depovite. compared to that i'm a ***** cat here.

but again, if this is just a social board, then i apologize.

Soccertese,
forget it - I deleted my post anyway - realizing I am just too crabby this morning. You're fine, proceed..........

wow. tough nut. have you tried
http://forum.parkinson.org/

I'll check it out..Thanks!