Hi ECD,

I've come off meds twice, the first time I did very well but then my progress was hampered by a sudden onset of nut allergy and an episode of anaphylactic shock. All that eventually landed me back on PD meds.

But then I quit them again 1.5 yrs ago. Since the start of dx in 2003 I was on meds and not too long after that i also started on Dopavite. It's hard to see the difference Dopavite makes while on meds but it certainly makes a difference off meds. I wouldn't be without it and at this point I can tell if i miss a day. But it's not the whole story. I cannot afford physical therapies like massage at the moment, which in the past has been, without a doubt, beneficial.

I also attribute some of my current problems to damage caused by the years on meds when i was basically in starvation mode.

My thoughts on it all right now: I deeply regret ever taking PD meds, they are useless and dangerous. Commitment to nutrition, physical therapies, meditation, tai chi, yoga and so on is without a doubt the way to go. Spend 50% of your day at it if necessary.

My quality of life off meds is infinitely better but i still have a lot of problems with PD, including terrible pain. I don't have to debate with myself about it anymore though. I will not go back on PD meds. Each and every problem i have, i search for a way around it. And I fully believe that eventually I will recover completely. It's all a matter of getting the right practical support. That's what we are all having the big problem with around here. The competition for limited resources.

The pharma industry have the situation stitched up. If a large proportion of those pharma dollars and euros were spent on cooking decent food for people who are unable to do self care, driving them to jobs where necessary, providing an extensive range of physical therapies, suitable housing, retraining for appropriate work etc, many people would probably rehab themselves into a totally different quality of life.

Most people 'get stuck' trying to meet obligations to financial commitments. They cannot take the time out to engage in the extensive work, and i mean 'work', grueling lonely work of body repair. Nor do they realise it is possible because of the unjustifiably negative and self fulfilling prophecy of the description and prognosis that attaches to this dx. The symbolic power of biomedicine and the pharmaceutical industry is overwhelming. I think they have totally screwed up the management of PD. I know it in my heart and head but I still have to grapple with the impact of it on my subconscious.

Muireann