Phew - so much to discuss and answer here or try to answer or something-

and remembering, I'm not all the way through my process, so while the issues raised are indeed provocative and emotional, I don't have a slate of fully-formed answers yet. All I can do is tell you some of what I'm working with right now - but some of it needs to remain personal and private until the work is done and we have the perspective of time, because while I am exploring things and want to share, I can't neccesarily shoulder everyone's doubts and apprehensions for both myself and everyone else all at the same moment...I do want to let my experience be as helpful as possible, and so I decided to report on the incomplete process rather than wait a year or two when I'm more fully evolved, but meanwhile those who are seeking may have to be satisfied - as I am right now - with an incomplete set of answers yet. Everything in due time.

BUT let me try to deal with certain things as I can. Firstly, I need to ask you, dear Peg, why are you so scared about this idea of misdiagnosis? I'm not following you on that yet, and I don't really get it about the raccoon...what are you saying here? And while we're on it, could you point me to the hard evidence that proves that percentage of neurons die before symptoms show up? Or where do you get that information? I realize these are highly emotional issues for everybody. Nice to hear your voice again, tho, Peg, and thanks Imad for your words, and Paula, and I will try to respond to as much as I am able....

http://www.parkinsonsonline.org/foru...hp?f=250&t=286

Peg-
In fact I did a similar survey of PLM members. The link above takes you to a write up on it when I had 39 replies. It has since grown to about 100 with no change in the patterns.
-Rick

And while we're on it, could you point me to the hard evidence that proves that percentage of neurons die before symptoms show up? Or where do you get that information?


Fiona,

I know of another woman (40 something??) from another forum whoo was misdiagnosed and got much better after the movement disorder specialist took her off the pd meds. She was able to say goodby to pd !

here is a link discussing the removal of ovaries increasing the risk of pd - i wonder if it is not only the estrogen the ovaries provvide but on a more esoteric level the dna memory which sort of indirectly applies to the ancestral influences for illness as well as the bodys' innate ability to respond and heal illness. How much do we really know about hormones?

having just gone through menopause i muse that my brain underwent a sort of hormonal reboot that at first cycled me through hot flashes , anxiety, frozen shoulder,fatigue etcc etc but some of those got better and how does one differentiatee those sx from pd or menopause? personally i don't take the reductionistic linear approach ccrediting onee sx to a single cause.

http://www.cbc.ca/health/story/2007/...-estrogen.html

md

I am so happy for you and for whatever circumstances have brought you to this point! I look forward to reading more posts about this - whenever you are ready to share.

Kind regards and best wishes for your continued improvement - Jean

First of all, I really really value everybody's contribution - marvelous stuff, and wish I could have long conversations with each of you about each post!

Ok, Peg, rereading your post, I think I got what you were saying now, it's clear. No, no abandonment plans here...I'll give yas whatever I can when I can. In terms of bean spilling - the link I gave earlier to the info about Dr. Hamer's work is probably the most resonant image I can relay of the gestalt of my current path...

The whole issue of diagnosis or misdiagnosis - very, very loaded, and ultimately vitally important. But in just speaking about where I'm at right now- it's not really the point either. I guess I would ask people what if instead of being cloaked in this garment called PD at the time of diagnosis, you were told you had some kind of dopamine problem, that there were treatments that could ameliorate the symptoms, but it was unknown how things would wind up going with you - would that make you feel better or worse?? This is where I think the meaning of the illness to the patient becomes very important - some people feel very comforted by the definitive world of the diagnosis even with its pessimism, but at least one can feel more or less "understood," validated for one's symptoms, part of a population that has a collective identity... On the other hand, a person can have completely the opposite reaction to the whole thing, feel trapped, doomed, labeled, judged, and foreclosed on. It's hard to see how that helps people live positive lives, and just living with that supposed knowledge would suppresss the very endorphins we need to keep our systems as healthy as possible. I think the important thing is to listen to one's body as it is now, and pay attention to the symptoms as they occur, but to stay present with them, and not use them to build an increasingly fearful forecast for the future.

As I said, being released from the diagnosis doesn't let me off the PD hook yet, because of my years with the meds, and figuring out how to disengage and built up my own vitality again. I think the crucial thing for me was and is my relatiionship with my current doctor - his confidence in the strength of his work, in the accuracy of his interpretation of my situtation, and in my potential for recovery. I've been looking for this for a long time!!! Although interesting that upon return to the US in the last few weeks, I saw another doctor - great guy, teaches at Harvard Medical School - told him about the original assignment to PD, and he immediately snorted and said, "Who gave you THAT diagnosis?" I said, "So you think it wasn't accurate originally?" He said, "Look at you - anyone with a little common sense would see that was way off the mark...."

But it doesn't really matter about that. What matters is how I deal with my situation, and in the largest sense it comes down to my determination, my surrender, my generating a transformative situation to heal my body. There is no reason that the plasticity of the brain can't extend itself to this task - none. So if gaining understanding not only of my own personal history, but that of my grandparents and their grandparents and their worlds is part of it, if finding ways to develop the ability to work and live from a place of muscle relaxation rather then tensing up about everything is part of it, if letting go of the fear that everyone else has that healing just not possible for you is part of it, if letting go of the meds by substituting mucuna, other herbs, physical exercise and meditation is part of it - the most important part for me is feeling free and licensed to envision a healed life in THIS lifetime and moving toward it, and letting go of all that came before.

Understanding the role of post-traumatic stress - Peter Levine's book Waking The Tiger is excellent, and he has concrete suggestions about how to address it. He says that even what would be a considered a "normal," routine event to many - an ordinary surgical procedure for instance - can generate PTSD for someone else. Harley, in terms of conversion disorder - well, don't know much about it, but yes, I think Freud's work is very related to the work my Swiss doctor does, although these contemporary guys take it way past what Freud was working on. Again, the link to Dr. Hamer's descriptions of his work are informative in this regard, but again, the development of exploring the patterning that is established in the brain long before our own births is the big deal here...

I think that there are people (doctors) working with this psycho-bio-geneologie modality in the US and other places- I am just currently trying to find out who they are, and I will report on that.

There were many wonderful comments made, and I may hopscotch a little in reply, but I plan to continue and complete the conversations we have started here.

Fiona said:

….I think the important thing is to listen to one's body as it is now, and pay attention to the symptoms as they occur, but to stay present with them, and not use them to build an increasingly fearful forecast for the future…

..There is no reason that the plasticity of the brain can't extend itself to this task - none…
.
….the most important part for me is feeling free and licensed to envision a healed life in THIS lifetime and moving toward it, and letting go of all that came before. ….
Said Fiona

Bob said:
I can read those sentences over and over, and I feel so much better. It is all at a human scale, and completely immersed in the best things, and looks forward because the best is yet to come.
Fiona, scientist.
Fiona, artist
When the two combine, fireworks light the sky
Science and the widest concept of art are needed to deal with this disease on a day-to-day basis, and defeat it in the end.

i still don't get it. do you have pd or just calling it something else? if not, why are you taking mucana? what are you treating?

Maybe drug withdrawal?

Fiona, I'm smiling ear to ear at your progress. You go girl!

I believe what Fiona is saying and experiencing because I know of no one - NO ONE - who says they think they are improving on mainstream PD medications alone. Does anyone? They might be maintaining or masking symptoms; feeling better for a while on a sinemet honeymoon - but actually getting better by simply downing a regimen of pills as prescribed for PD for the last 50 years?

I've been reading and thinking about this thread, knowing that what Fiona describes is probably true, and wondering how that squares with my excitement about what I have learned as a patient adviser to MJFF. They are all about fairly mainstream medical research. The new difference is that they, and the scientists they engage, which are the top minds in PD, understand that they don't understand PD. They know they have a lot to learn; they know it is not simple; they know that they have to look under every rock and behind every tree to even try to figure out what is the Hydra-headed beast called Parkinson's. Plus they understand that the answers lie in the patients - as donors of biological specimens and as people with symptoms, emotions, families, and lives.

At the research roundtable in Portland earlier this month, Dr. Penelope Hogarth, who is heading the MJFF biomarker study at Oregon Health Sciences University, said she thought the most important development in Parkinson's research was "an idea," - the idea that the thinking about PD was changing; that we don't know the truth; and that was "revolutionary." Now that science is questioning everywhere, there are more possibilities for answers.

So, in my mind, Fiona's experience lies within the realm of possibility because the borders of our realm are so wide. As she said, a PD diagnosis puts us immediately into a box of limited vision and cramped space. Our horizons disappear. Now, just the very fact that we know that we don't understand, that the answers aren't stuffed in that box with us, that, in fact the box might be mislabeled, is liberating - it busts us out of the restraint and allows us to see the horizon again. Anything is possible.

It really is very exciting.

indigogo,
i understand the desire to get better treatments, whether pharmaceutical, physical, surgical, spiritual, gene therapy, stem cell.
at least for me, i'd like to know what the new diagnosis is. did it change due to reversing pd or was it the wrong diagnosis from the start? if it's the former that's quite profound. it would be a first. maybe i'm missing the point. just be happy.