I applaud your efforts to research and report on various products and modalities that you and others have found to be beneficial in coping with the effects of Parkinson’s disease. I have noticed that some of your posts on a few Facebook Parkinson’s support group pages have met with opposition. The page administrators sometimes associated your posts with commercial attempts to prey on people who may be desperate for relief from PD symptoms. In your case I think that the censorship is unfair.
The page administrators (and I am one on several pages) need to walk a fine line between restricting bogus and self-serving claims of Parkinson’s cures from testimonials and posts of PWPs who have actually discovered ways to reduce, and in some cases eliminate, their PD symptoms.
I do know that many of those claims are genuine because of what I’ve seen in others over the last 13 years and what I’ve experienced myself. (I went from 7.5 Sinemet tablets a day in my sixth year post diagnosis to being totally western medication free over the last four years, and counting.)
I see two main problems. First, too many of us are blind followers of our doctors and the mainstream medical community. If we don’t hear about a treatment from an M.D. we assume that it's a scam.
Second, and this is related to the first issue, too many of us accept as a fact that it’s inevitable that our condition will deteriorate and that there is nothing that we can do about it. This mindset was reinforced to me when I recently read a book about living with PD written by a friend of mine. The book was a brave account about how Parkinson’s has affected his life. But, the most heart wrenching part to me was that he used the word “incurable” ten times in the first 100 pages. How can we find ways to live well with this disease if we’re only willing to listen to the established medical community, and we are resigned to a continued deterioration in the quality of our lives?
Yes, Facebook page administrators have to protect their members from scams and charlatans. But, they also owe it to their members to spread the news of, and open their minds to, complementary therapies that can improve the quality of their lives.