No, I'm on Madopar too. It was the combination which was causing me severe dyskinesia and many other side-effects. But I am also slowly but surely being able to reduce the levadopa too, through holistic therapies. In particular, strategic light therapy is working for me, as it has for very many others in lots of trials (thus the blue light glasses in my profile photo), combined with scientifically chosen supplement regimes and a very healthy, PD targetted diet, plus music and dance therapy. I am getting better all the time. Have some "now" and "then" videos comparing my current state with a year ago, if you would be interested?

At eight years it is remarkable you are / were / only on an Agonist. It is so dangerous for a PWP to go off Levodopa. You are doing something right to have avoided Carbo-Levo for 8 years ! Cheers !

Gary, how long have you been diagnosed?

Yes, this sounds more like Dyskinesia which is a side effect of PD drugs.

This is in no way medical advice, just the sharing of my own experience with a dopamine agonist and what happened after I weaned myself of it. I started taking myself off the medication called "ropinerole" a while back, and have not used it at all for a over a month now. The reason I did so is because I independently became convinced the side effects of the drug were worse for myself than any benefits.

WARNING: there can be severe withdrawal issues from dopamine agonists!!!

Observations:

On the third day of withdrawal I started feeling grinding depression and high anxiety about my own personal situations. So I pulled into play all the things I know about combating this. I started using my bright light SAD lamp in earnest. I started going out for walks around the block - something I have only done once since moving back to my parents. Lo and behold, I found the pavement around here is mostly slabs - which means I can use the visual cues of the patterns of cracks to help me really walk more properly and step out some of the symptoms. I started speaking to people more - on the phone, online and even visiting family - again something I have barely done in a long time. These days, I take an half hour to an hours walk while in an "off" state every day.

The depression and anxiety was not only quickly addressed, but I also began to realize that the ropinerole itself had been causing marginal obsessive-compulsive behaviours around online activities. Worse still, it had made me anti-social and prone to avoidance behaviors, unable to face things I found stressful and hence increasing those stressors markedly.

My pain, rigidity and stiffness also began decreasing noticeably by the day. Each day, as the ropinerole was flushed from my system, I was having better "ons" without the disabling dyskinesia I would have got weeks before. I am able to access movement more, and thus to move my way out the "offs" or at least ease the pain of them, more. I can pick up my smovey rings and use them more effectively, for example.

My mind is becoming sharper and my clarity of thought is improving rapidly.

I can quantify all this, and have an external observer, because I can count how many times I have to ask my mum [currently my primary carer] for help, both during the day and at night. It has dropped from frequently to rarely. In fact I haven't had to get my mum up in the night at all lately.

So, counter-intuitively perhaps, by markedly reducing my drug burden I have managed to get my independence back. Right now, I feel I have rolled back my Parkinson's Disease by years.

Are the "full body" movements that you are referring to tremors or possibly dyskinisea from the medication (sinimet)? I know I can slow my body movements down by taking less sinemet, but I also become less mobile and more rigid and stiff.