To all my friends on Neurotalk.... I apologize for being out of communication for so long. Hearing the news of Rick Everettīs death was absolutely heartbreaking for me - athough no less the passing of Paula Wittekind, Ibby Kenna, and others... But it made me realize the time is perhaps right to report back to you all some about why I have been away - not to receive public feedback on my treatment etc. - but just to let a bunch of folks that I care about a LOT - that is all of you -what I have been doing, and why I havenīt been on this board.

This whole Parkinsonīs conundum can be so complicated and endlessly confusing, as we all know. And as I have found out, belief is so much of the picture, or it has been of mine. I donīt want to discourage anyone with my experience, nor to encourage anyone to do things that would be dangerous for them. I just want to tell a little bit of what has happened to me.

I was diagnosed in 1991, at the age of 34. I never thought that the diagnosis sounded right to me, but I didnīt know what else to do but what my highly regarded top neurologists in NYC were telling me, which was to take more and more medications. After a number of years, I had a mountain of side effects, three hours daily of full body dystonia for 11 years, dyskinesia so bad I could barely speak at times. When I questioned my diagnosis, my doctors continually told me I would be sadly deluded not to accept my diagnosis of PD.

Well, finally I saw a number of alternative doctors, and one in Switzerland who said very firmly ĻYou donīt have this disease, and never did, but you better get off these medications right now.Ļ That was in 2010. I was on maximum doses of a lot of stuff. I had gotten off the 4.5 of Mirapex two years before by myself, and it was extremely challenging to do so. And I know about all the possible syndromes that can occur when one does this unsupervised. But there was no one with any relevant experience to supervise me.

Kids, donīt try this at home. So I didnīt. For the sake of finances and to be around some shaman friends, I moved by myself, alone, to Colombia in a wheelchair and lived in a sanatorium run by Seventh Day Adventists in rural Colombia for more than a year and a half . At first I spoke no Spanish (and nobody here speaks English!). I switched off a lot of stuff by replacing it with a LOT of mucuna pruriens. I treated with the most respected neurosurgeon in Colombia, who also believed that I never had PD, and that I can recover completely. He works entirely with visualization and self-hypnosis..

It was not easy. But I got off all Stalevo, all CR Sinemet, all Amantadine, and am now taking less than 10 percent of the Sinemet and Mucuna combo I was taking a few years ago. I still have some serious physical problems to work on, and my support has not been ideal. But it is very clear that I do not have now the symptoms I had when diagnosed, nor do I have the symptoms I had at my worst. The dystonia has gone entirely. I have my voice back to the point where I am singing for the first time in my life - in public presentations. Solo. In Spanish. (before I couldnīt even sing happy birthday). I do fairly well here with my newly acquired Spanish. I have been working at a professional level a little again, choreographing and directing dance theater, and even performing publicly in dance theater - without tremor, and with a movement confidence lost to me many years ago.

The only way I could accomplish this was by not thinking about PD, not identifying myself with PD, focusing on imagining well-being and trying not to think too much about symptoms. As much as I care deeply, deeply, deeply about my friends struggling with this really tough diagnosis, I could not take on the doubts, fears, opinions, information of others during this time because if I didnīt keep to myself, it was too hard to make the leap of faith that this improvement has required.

That sounds so harsh, and I am so sorry that is the way it has been. But before anything else, I had to get my own oxygen mask on, any way that I could. This path has required tremendous sacrifice for me. It was and is my hope to be of help, to be of service. I offer my story as the only thing I have to give right now. I still have a ways to go, but I do believe I will complete my full recovery. And whille I donīt have a normal life yet, I am alive. And I am dancing and singing in public, doing botanical drawings, writing poetry in Spanish... And sending you all so much love.

Fiona

Fiona,
So good to hear from you, Welcome back.

Girija

Thank you for sharing...

It is a very emotional thing for me to write this post. I know many people who have been and are struggling so hard with this thing...and I think of Rick - and others - who was the very model of mental sanity and graciousness making the decision he made...and all I want to do is to be able to give the magic answer, and say this is how you do it, my dear friends. But in order to have arrived at the point I am at now, I had to leave everything behind, the whole paradigm, the whole idea that there is this thing that we all have, and that one path or method will help everyone or it helps no one. I believe that is a false construct.

And while I am not going to present my medical records in order to convince people - in fact, I am not trying to convince people of anything. In a way, one walks the healing path, and the road rolls up like a carpet behind you, and the next person still has to find their own path. But for anyone open to my experience who wants to ask me something about it, feel free to PM me. Meanwhile, I want to say that what I have been through has been quite the ordeal, and involves many factors, but that for me, I am finding my way out of this labrynth more and more. I wanted to do it in time to hep Rick, Ibby, Paula, Carole.... But I can at least now try and leave a trail of breadcrumbs, a golden thread... Some will be angry, and say it is false hope. Hope is not a guarantee, but hope. A thing with feathers. Bless you all.

Fiona, you write so beautifully. I would like to hear more of your healilng journey in detail, if that is possible. What role did diet and shamanism play in your recovery, if any?

Blackfeather, thank you for your kind words. Bueno. In terms of diet, I stopped eating refined and processed food almost entirely and eat mainly vegetarian. While my initial symptoms of weakness on the right side (that I now no longer have) were not prompted by gut issues I donīt think, the many years of meds definitely left me with horrible constipation. I have cured this and made a better intestinal health than I think I have ever had before by drinking a large glass of aloe vera gel (fresh, from a piece about the size of my forearm) mixed with fresh pineapple juice and chia seeds daily. I also make yogurt from raw goatīs milk and Eptavis, a probiotic product. This has served me very well. I also eat fresh papaya, mango, avocado, banana, ginger, fava beans, raw honey, tumeric, sunflower seeds, sesame seeds, maca powder, coconut, amongst others, very often or daily. Celery juice or tea is great for cleaning out the system. So my focus has been very much on eating whole fresh foods, and not so much on specifically targeting certain vitamins and such. Coffee helps me quite a bit, bathing with it as well as drinking. I also bathe with salt, aloe vera, and at times basil. The doctors here prescribed tea of coca leaves, or powdered coca leaves - these would be illegal in the USA, but available here at the indigenous shops...remembering that the raw, unprocessed leaves are to cocaine as like a loaf of rye bread is to Jack Daniels. However, consuming this gave me horrible dystonia all over again...

In terms of shamanism, it is a complex subject with many sides to it. There was definitely a conflict that presented itself between the energy of the shamanic world of medicine, and that of the Western pharmacological treatment. But beyond just the meds, they are such different world views, I donīt feel I can address it easily here. Perhaps if you had a more specific question, or if I meditate more on the subject, I will come up with a better answer!!!

Fiona - which doctor did you see in Switzerland? I've just heard of a very good clinic in Switzerland and am wondering if it's the same place. Also how did he reach the decision that you don't have PD?

Trixiedee