It is very hard to get off Mirapex. It is extremely addictive, and very insidiously powerful. After maybe 5-6 years of taking 4 to 4.5 mgs. daily, I switched overnight to 1.5 mgs. and a LOT of Stalevo. That actually was ok-ish. But I think that Mirapex gets more powerful or something the longer you take it. At that point some of my symptoms abated a little...

But then my doctor tried to switch me overnight from Mirapex to the Neupro patch (4 mgs.), and after ten days I wound up in the emergency room. Then he put me back on the Mirapex, and we tried again, exchanging gradually to 6 mg. of the Neupro over an 8-week period. Then they recalled the Neupro patch, and wanted me off it overnight. What a nightmare. My doctor wanted me to go on Requip, but to me that sounded like Mirapex in a slightly different costume, so I said no.

It's hard to quantify exactly, because at that time I went to Spain and got the permanent ear implants. I also was working with various alternative things like ozone IV's, and all kinds of other off-the-beaten track sorts of things. But now, a year after stopping Mirapex, I am not taking it, or Neupro or Requip or what have you. Just Sinemet and Stalevo, and some Amantadine. I recently started low dose naltrexone, and since then have been able to reduce my Sinemet about 20- 25% in a very short period of time ( a month or so).

I won't say it was easy - the depression is mind-boggling. I control it with positive thinking, prayer, exercise, as much social support as I can muster, trying to deliberately cultivate pleasurable experiences.....it's ALL important, because the task is huge. But it can be done. And I now sleep a very nice 7-9 hours nightly, have a clearer mind by far, and have stopped the obsessive behaviors. Oh, and my off periods have gotten better, and the dystonic episodes milder and now even considerably less frequent. I take lots of supplements like curcumin, as well. As difficult as it's been, I have no regrets about taking this path.

I know it does help some people, and god love you, I think that's great. But it just goes to show that there is extreme variation in our conditions and effective treatments, which really calls into question in my mind the value of the search for the definitive cure which will overnight transform the face of the disease. More complexity to it than that, but then more possible solutions and approaches, too.