Hi there-
I have a wonderful neurologist - I think - a very humane, learned person, a big doctor that leads a lot of cutting-edge type studies, and believes in things like dance therapy being effective, etc., so able to think outside the box. But still, all he really does for me is suggest different or more of the standard medications that are out there....which for me - considering how severe a lot of the side effects of things like mirapex have turned out to be - it feels like a lot of what we have is just as experimental as the things that only have 'anectodal' evidence; the only difference is there is a lot of financial investment and interest behind them. So while I love my doctor, he is not a healer, I wouldn't say, except in his encouragement...but even discouraged me when I told him last year that I had reduced my meds some and felt better - he was like, oh no, go back to your previous levels. Which made me really discouraged at the time. He recently recommended Requip - I looked it up and it said one of the most common side effects is 'worsening Parkinson's symptoms.' And I'm like, "and this is neuroprotective how exactly?" He said, "oh, they have to say that..." And I thought, "yeah, they have to because it's true..."

So whether you're trying something outside the mainstream protocol list or totally on that standard list of 'approved' drugs, I think we're all basically being experimented on, and to a large degree are on our own. I haven't heard of a neurologist who is really inspired to the point of using some approach that really makes a huge difference, so I think it is up to us to explore and see what works for us. Because even if we don't, what's available in the mainstream is just about as unpredictable....and now all the increasing news we hear of drug side effects and interactions being more and more of a problem, I think we're just beginning to see the tip of the iceberg of a huge problem in our very medicated society.....

thanks Fiona for the advice it is great to here how others are coping with this disease

thanks so much it is great to talk and see what others take


Sue

I agree totally .. the medical establishment has only L-dopa and the other drugs which seem to serve the industry more than our lot. I think for incurabe diseases an aternative "holistic" strategy and proactive attidude seems to me a better strategy. This is my approach any way.

thanks imark I am going to continue on with the mucuna thanks for your message


Sue