I think the meds can work in different ways for different people and there are many factors that go into the balance. I am one of those who completely disagree that the worsening off-time is entirely due to the worsening effects of the disease. I have been on various Parkinson's meds for at least i think 14 years now. They only started to get really problematic when I started Mirapex about nine years ago, and have gotten somewhat less problematic since I decreased and now have (at least for the moment!) entirely stopped mirapex. The thing is that during my good on times that I still have some of the time, even my doctor says he wouldn't know I had PD. I don't think ths would be achievable if the off times were really representative of my actual idiopathic disease state. I think there is definitely an under-acknowledged secondary (if you want to call it that) disease process that is created by the medication.

In my experience, the painful dystonia described above is totally caused by the drop of medication in the body, and only appeased by its replacement, although some things like Benadryl and Klonopin or even Atavan can help relax the muscles, as can working with breathing techniques, and having someone help move the affected person's or limbs around (very sensitively) to help relieve the cramping. I would do all that I could to avoid the dystonias because I think they are very shocking to the body.

So I think the l-dopa definitely decreases your body to do its own work properly, that ultimately for me the agonists have been a quick fix that cause even more serious problems, and one should not make sudden changes in any of these...making the recent recomendation by the Neupro patch people to make the required titration off in three days bordering on the criminally negligent in terms of how it endangered people.

And no, I was not warned about any of this before embarking on taking them. I feel increasingly angry that the side effects and dangers of these meds are not taken that seriously by many doctors, and that they don't even take the time to educate themselves about them.