A large part of the problem seems to come from trying to force an art to become a science. There was a good reason to speak of the Art of Medicine. It is far more accurate.

The perception that there was money to be made changed things and the Art died. When one is seriously ill or dying, one does not want the starched white coat. One wants the warm breast of comfort that says "Sleep, child. All is as it should be." Heck, isn't that the whole idea behind hospice?

-Rick

Just a reminder folks... we're not here to judge other people's experiences of recovery, even if they don't jive with our current scientific knowledge or understanding or our own personal experiences.

We don't want to de-value others' experiences. We can be skeptical, but we have to do so in a respectful manner that doesn't put words into other people's mouths.

At the end of the day, since we don't know the actual causes of disorders like Parkinson's (still just a whole lot of theories), we also can't say that X will never work, while Y maybe will. Different things work for different people and we're all just here to share our experiences with one another for information and emotional support.

Thank you for your cooperation.

DocJohn

DocJohn, thanks for how you expressed that. I am a caregiver/advocate for my dearest pal who has some kind of Parkinsonism. She is one whose Parkinson's diagnosis came reluctantly from neurologists 13 years ago; it's still not uncommon for a physical therapist, doctor or other expert to comment how atypical is her presentation -- yet this is the path that is the closest fit. Yes, she does get benefit from l-dopa but that alone doesn't convincingly confirm a diagnosis of Parkinson's, in our humble opinion. The brain is a mystery.

Because her condition is acute and complex, we have sought and continue to pursue the widest range of allopathic and traditional medicine to support betterment.

What is recovery? What is healing? It looks, from here, to be something that one must define for themselves. Sometimes the spirit heals whilst the body goes its own way. That is healing, to some. If the body doesn't degenerate as fast as it would have without "experimental," "unproven" or culturally different method, is this not some kind of recovery? Recovery of otherwise lost life?

Anyhow, I'm writing here to thank you for your posting. I found GREAT help and solace four years ago from this group when we had to take up self-help and advocacy to prevent Jan's death. She's much better today because of what I learned here, yet I stay away for months at a time because of plainly hostile responses on this listserv I can expect to receive when I post questions, information sharing and express interest in non-pharmaceutical possibilities.

On this group, I've been repeatedly accused (by one person) of being a shill for a manufacturer, of selling product, of having financial interest in the remedies we were researching or giving a trial. It was heartbreaking to have this directed my way.

We do not need to insult one another when our points of view or life choices differ.

I do want to know when someone personally knows of reasons for caution. I do hope that insistence of PROOF that something is formally established as a solution for Parkinson's can be dropped from our conversations here. If that cannot become an agreement among us, then make that a requirement for posting. I would oppose limitations on our speech, of course, but if you read through many threads the same challenge appears repeatedly: how dare you say anything if you cannot cite medical evidence from mainstream U.S. approved channels?

I hope this issue can be resolved here, so that people like Jan can get the solace, help, inspiration and advocacy needed to keep up the struggle against giving in to this disease.

Warm wishes to all,
Trisha

In my extensive conversations with Robert Rogers, I realize that he defines recovery much the same as Tricia. That leaves a broad range of interpretations for what is happening to various people. I find a more narrow definition suits my way of thinking. I think that a person has recovered when they no longer have any manifestations of whatever it is they recovering from. Using that definition, I don't believe that any of us will recover from Parkinson's until at least the cause is known or the causes are known and treatments have been verified to actually rid the person of the disease. The cycling program that I'm associated with, PFP, has certainly brought relief to hundreds of people, perhaps thousands, but there is no statement that this is a cure. Although I am still diagnosed as being at level one, I can certainly feel changes to my body that I relate to PD. Nonetheless I cycle on. Whatever helps.