Um, I seem to be getting better.
 

Hi People -
SO.... I'm not quite ready to talk fully about what I'm doing yet. I want to be a little further along before giving full details. But I wanted to give you the sense of possibility coming. There is a new medical age in the process of dawning and it's going to change a lot of things. This is rad stuff. It involves understanding how stress, intergenerational trauma, systems of belief, placebo response, the meaning of each person's disease to themselves, questioning many of the base medical assumptions that we've been operating under (hello?? Lou Gehrig?), challenging pharmaceutical - well, slavery....

It involves understanding what one of my friends (hi RM!) calls the inherent terrorism that is inflicted in receiving a diagnosis like PD, with all its nasty "stages" and horrible expectations loaded onto us and our families, the depressing absolutism of prognosis that we are immediately labeled with - how could anyone recover with this kind of identity of hopelessness?

Lest you think Parkinson's dementia has finally set in for this citizen - well, it hasn't. But a lot is changing for me.... ok, so this summer I went to Europe and was re-evaluated, with the conclusion that I don't have PD and never did. I don't want to discuss this fully yet, BUT... remembering that I was diagnosed with PD 19 years ago, that almost all this time I have been treated by top NYC neuros - that I have been on a lot of meds for 10 - 15 years, so no matter how much I don't have PD, there is the matter of that secondary PD caused by our friends the drugs. What I'm doing doesn't involve new drugs, surgery, or anything like that. It does involve a whole new mindset, some herbs we already know about (mucuna, curcumin, camu camu...), some homeopathic medicines, probably the fact that I already had the permanent acupuncture ear implants two years ago, craniosacral therapy, and most of all thinking about the brain and my experience in a whole new way....

Today I was looking at my bottle of Stalevo 75 because it was time for my monthly refill. I used to take six of those suckers every day (like back in May of this year, and since 2005), along with even more than that of Sinemet, Amantadine, etc. The July-August bottle of Stalevo is still almost full. I have been taking one Stalevo daily. Today I had virtually no ""off" periods - drove my mom on two extended shopping trips, reorganized the basement, went swimming - no dyskinesia - I feel calm, my body feels quiet, strong, and just good....I have reduced my overall medication load by about 50% in the last eight weeks. The doctor's office just called with my latest blood work for my underactive thyroid (nine years of pills for that). It seems that I need to reduce that medication as well.

There have been and are many ups and downs, and I still have a long, long way to go. But I am walking out of this PD thing, step by step, for good, calling it quits and going home - well, to a new version of my life.

Whether it's all because I was misdiagnosed originally - my US doctors never even would consider my requests to rethink the diagnosis lo these 20 years, said there was no way they were wrong about me. But I think many of us are actually misdiagnosed - and even for those who do have what we recognize as classical (?) PD, I think there are a lot of very different ways to think about it. And the fact that nothing is set in stone.....How could it be?

I'm being vague because as I said, I am not ready to totally spill the beans for a while yet. But I care so much about all my dear friends here, and I just wanted to say hang on, hold on, keep the faith. Don't give up now because there are better days coming.

Love to you all. And more soon....
Fiona

Fiona, I really happy to hear you are doing better..I know you've worked very hard on it

I made a decision to wean myself off of some of my pd meds, and see what happens..I suspect that Stalevo/Sinemet have more to do with my slide downhill over the past 10 months than Pd alone has..I seem to have crossed the threshold, of not being able to live with it, or without it

The wearing off periods are brutal, and I can definately do without dyskinesia..Im sure as hell that Pd didnt cause that..I can deal with the Pd, but I cant deal with the side effects

Yeah, Steve, you're right, I have been working on this in many ways for a long time now, and I think the point of critical mass is being reached for me because of efforts in many modalities. Some are hard science-ish, but a surprising amount of what has been helping is getting used to the idea that the things that I didn't think were possible were significantly defined by my fears. And believe me, I have so much empathy for any of us - the doctors included - well, maybe not Big Pharm - but those of us who battle fear at any level.

I have much, much to say and tell down the line, but I wanted to write this early "preview" style update because I had read some of the posts of folks like you, Steve, who are really struggling with the meds and their inconsistencies and side effects. I can relate to the most despairing of these - been there, I know just what that's like. And everybody's different, and I don't want to disrespect anyone else's challenges nor the solutions that seem most right for them...we all know that about each other. The issues I raise here are enormously complex and emotional, I know.

But I wanted to give a shout out, and say that I really think much more is possible than we have grown accustomed to believe. And I really do think there is a whole new kind of medicine about to be birthed in which the mind-body connection - and all its applications to our existing treatments - will be investigated and validated like never before, and it will be like the discovery of germs or modern surgical technique -at least - in its scope and significance.

Best news of the day, for sure
 

Just the fact that Fiona is talking like that is the best news I have heard in quite some time.
I have plunged into the mind-body-spirit thing of Continuum, and I have been surprised how it anchors me, even though I am just starting. It aims at a level inside me that is layers below the surface: below intellect, below concepts, below words, and - yes - below emotions. I am certain that it makes a big difference, and I am just beginning. I will crave to hear more from Fiona and others.

The diagnosis as Parkinson's does not happen until 85 to 90% of the cells in the substantia nigra have croaked. And I keep asking, what is the name of the disease that killed the first 90%? Movement disorder looks like the final system to crash. The remaining 10% of my brain cells witnessed what slaughtered the first 90%. They are not eager to go back to work with that kind of casualty rate at the front lines. The 10% sit around drinking Guinness and singing Ozzy Osbourne songs - they no longer believe that anything will work. 9 out of 10 brain cells died before the movement disorder started, and we don't even know what hit them.
I lost my sense of smell 40 years ago. No connection, maybe. But Something Happened. To blow away 90% of those cells and leave me with 10% seems to indicate that whatever it was that killed the 90% must have been very big and very strong and very deadly. It is something beyond the range of our sinemet treatment, that's for sure. It's something hot wired to the very soul, the mind, the person, or whatever that spirit thing is. The thing that makes us conscious, different from rocks
Wouldn't it be funny if the truth has been right in front of our eyes all along.

woohoo!
 

So glad to hear it Fiona - where in Europe did you go and how did they assess you?

Trixedee

good to hear from you
 

Fiona, You give us hope and we all know there is a mind/body pathway. I welcome the fact that you are sharing how you have used it to the fullest. Knowledge is increasing so rapidly that we have to be on the brink of something...I just hope they find it without chasing too many rabbits. There are many people who care, but then the sponsor of ceregene and other gene therapy treatments is selling and does the new company have the same dedication to this therapy?

Sometimes i think big Pharma needs a natural alternative treatment more than we do, but for entirely different reasons, if you get my drift.

best wishes and please keep in touch here,
paula

Hi Fiona,
Glad to hear you are feeling better. Over the past two or three years I have been following your post. While I don't think some of the things you have tried are for everyone with PD, at least you are trying to make yourself better and it seens to be working for you. It shows there is more than one way to treat the disease.

Paula, I would kick big Pharma in the *** for you but I don't want to brake my foot on thier hard heads. :D

GregD

hi
 

Hi Fiona,
Glad to hear that you are feeling better!

Girija

Fiona - I believe! Thanks for putting it all out there ....

So GREAT to hear from you all. Having confused visions of Bob's brain cells peeing on City Hall steps while Greg scarfs another Guinness and sings his favorite Ozzy song...oh, never mind.....

Greg, you are right when you say not everything I've tried would work for every PD patient - just as I think no one approach will help everyone. And I definitely needed to have a certain level of faith in the authority giving me new information to work with, based on the belief system I grew up in, etc. That said, it's surprising sometimes how much we can accept new paradigms when truly motivated...

I was not going to explain my history with this work I am doing until I had a better understanding and more complete experience - I am very much mid-process with it. But I got so excited looking at my 'leftover' almost full bottle of Stalevo last night...

I went to see a doctor in Switzerland - he came recommended by my cousin, who works with him there. It is a body of work that I believe emanates from German New Medicine. It postulates that much, if not almost all, illness (particularly chronic stuff I would imagine) results from unresolved conflicts both from one's own lfe, and those of the past few generations of ancestors. It focuses on 'decoding' the brain's response to these incompletely grieved-for traumas by largely unconsciously re-enacting or expressing them in the body through the symbolic constructs of illness.

Anyone still with me? Remember how many PD people have said that they experienced some kind of huge emotional shock in their lives just prior to onset? The idea behind this work is that illness can be resolved through making conscious and completing the mourning process for these inherited stresses, thereby essentially reprogramming the brain back into health. Now my understanding of this work is at this time very incomplete, so I hesitate to characterize it further.

The doctor I saw is not a neurologist but a brilliant physician who has worked with many extremely challenging medical cases. He is focused and thorough - he is the only doctor that ever wanted me to get a DAT scan to confirm diagnosis (all my US doctors have been happy with 15 minutes of watching me do toe taps before committing me to a lifetime of treatment....) I have enough French to work with him - he speaks no English - but I am looking for English-language materials and practitioners to disseminate to you all, if interested. The work is fascinating and moving, and involves reflection and deep examination of one's own life story, one's memories, passions, disappointments, family configurations, etc.. It brings into focus the ghostly stories of past generations and those who gave us life. It is about love and forgiveness of ourselves, our families, our communities... And this doctor is very clear about his particular intentions: "I am not interested in being resigned. I am not interested in being hopeful. I am interested in results."

A lot of the reading I have been doing about the plasticity of the brain, PTSD, and other related brain issues have been seminal in preparing me to accept this approach. These authors have included Norman Doidge, Peter Levine, Lewis Mehl-Madrona, and others.

I will let you know more later, but as I said, I wanted to acknowledge what I think is on the cutting edge of a huge step in dealing with the body, the psyche, and the meanings of our lives, the construction of a truly humane medicine.

sends a shiver down my spine...
 

... the stuff about ancestral trauma - my father grew up In Nazi Germany (in a communist family) and m ymother spent her first few years running away from Nazis in Europe - I grew up with two severely traumatised parents, and as a result was pretty damn traumatised myself. Interesting that it's GERMAN New Medicine...

I have had a DATscan and am definitely low in dopamine but am very intrigued.

Trixiedee

PS - my mother's autobiography http://www.amazon.co.uk/My-Innocent-...2340040&sr=8-1

no, shivers down MY spine
 

....my mother also, deported from Paris by Nazis to do war work, took last train out of Berlin before it fell. My grandmother at age 11 holding her beloved father's hand when he was shot in the street during Russian revolution, then raped repeatedly by father's murderer for a year, etc. etc. etc. I only learned this last year, but she had unexplained dystonia-like episodes of extreme shaking for the rest of her life...... The Swiss doctor explained to me how my own dystonia - while apparently medication-induced - is also the exact image of a trembling young girl in terror fighting off her attacker... How can those experiences of stress not affect the hormonal composition of one's tissues, the cellular memory? They say that when our mothers were fetuses inside our grandmother's body, that fetus already had all the eggs that she would have for her life. So in a very real sense, we WERE there for some of those experiences....

Thanks, Trixidee, for the link to your mom's book. I will write to you personally over the weekend....

Fiona thanks for your post, it gives me hope that things external to us can change and a different view of medicine and healing will emerge, but also that we in our hearts and minds can be helped to a better understanding of how to maintain health..... and perhaps regenerate it when everything gets really flaky.

Your post certainly hit a spot for me, from an early age I had to be strong and a survivor and mostly just absorbed the shock, got on with it, and ignored the internal damage........ i am interested in the inter-generational creation of dis-ease. Here in the UK it can be very visible, so I have no doubt in it's reality, and believe in the potential for reversal. The old damage that used to occur so much with poverty and hunger and grinding labour conditions have moved aside and opened a curtain on the other kinds of damage people can sustain.

Thank you for being tireless in looking for answers in ways and places that it is not always easy for most of us to do, I look forward to hearing how you progress, I am simply so happy that you can make that little statement that we would all love to be able to say. It is always great to read your posts, and when you re-surface it is always with a refreshing dazzle of life!

blessings!

Lindy

wow....serendipity
 

I believe illness has a revealing signature -how can anyone disregard trauma association with pd?
md

[QUOTE=Fiona;686869]Hi People -

Whether it's all because I was misdiagnosed originally - my US doctors never even would consider my requests to rethink the diagnosis lo these 20 years, said there was no way they were wrong about me. But I think many of us are actually misdiagnosed - and even for those who do have what we recognize as classical (?) PD, I think there are a lot of very different ways to think about it. And the fact that nothing is set in stone.....How could it be?

That reminded me of a comment made by Dr. Jerome Groopman. He is a professor at Harvard Medical School and is chief of experimental medicine at Beth Israel Hospital in Boston. As well as regularly writing for the New Yorker magazine, he has authored a wonderful book entitled How Doctors Think.
In it he says the most important thing you can ask your doctor after a diagnosis is, "Could it be anything else?" It is a question that will force good doctors to reach beyond the symptoms and allow you both to consider alternatives.

Fiona, so glad that your world is transforming. You've been an intrepid explorer for all of us.

Jon

Having already emailed my greetings, I will add some fuel to the fire if I may. From my blog:

Preconception Period

As hard-to-believe as it may seem at first, things that occurred long before one’s birth can directly impact the endocrine system. One’s mother’s experiences before she became pregnant affect the offspring in a manner similar to that experienced during gestation, but once removed. This can occur when the original happenstance has sufficient impact as to indirectly result in a higher level of stress hormones than would have otherwise been observed. A similar but even more diffuse effect can be observed in the various aspects of life that affect maternal stress response such as social support, economic status, family and spousal support, etc.

…preconceptual stress to the dam, even well before pregnancy, influences affective and social behavior in her adult offspring, depending on how long before conception it occurred, the behavior tested, and sex. Leshem 2009

I think it is quite probable that they can recognise these things in animal models, the whole generational stress thing, that it is physically manifested in lab rats, and primates and other creatures that are studied, and it is still far too controversial to apply to humans, as we are always deemed to have free will, and that is seen to include everything. But why wouldn't we, if babies are born stressed because of maternal nicotine use, or poor diet, or other physical stressors, why wouldn't other things that are part of our natural being have an effect, and why would mental or emotional stressors be ruled out.

I love the clarity that science can bring to things but also have to see that it is very selective, and only sees what it wants to see, and often is only able to shed light on things it is funded to shed light on. The small individual beacons seem to be the ones to look for, both within and without established thinking. They are the ones that show the potential for a better science, a new way of thinking.....

I am endlessly inspired by the thought that there are whole solutions out there waiting to be found, that the fava bean will help some without risking major damage, that intensive and personalized care will have better results than one pill fits all, and that balancing ourselves holistically with the right kind of knowledge might yield better results than we are currently getting, that exercise can be more neuroprotective than other treatments, and oh I wish for a tilted bed, because that subtle thing the lymphatic system is likely to be involved too, it helps hydrate the brain - and to be honest I'd rather sleep feeling as if I was sliding down a mountain, than take another pill, if I thought it would help me!:D

Today has been an eye-opener, both because of Fiona starting this thread, and because of news of downsides to stalevo, and thus by implication, entacapone also. I guess a lot of us have been taking this in one form or another and I relate it to an observation Paula made recently....... for those of us now in our sixties this could be something we really need to get checked out......

Lindy

Wow, wow, wow, all of you. What a strange couple of days... I had been planning to hold off on posting for quite a while - even though I missed everyone - because I wanted to process my own experience myself, and because I was afraid people would think I was more nuts than usual....:o

But then the whole thing happened with the Stalevo bottle yesterday night - and I had this strong feeling "I am so glad that I didn't let this whole month of this crap go through my body this time" - and it inspired me to post because I knew that people have been really suffering because of med side effects and I wanted to give whatever encouragement I could...But then, I read about the revelations about Stalevo today - and had a sicko feeling - hello Permax, hello Vioxx - I survived you all - but interesting how I had a strong urge to get off the Stalevo first, out of everything that I was taking. It felt eerie, but also told me once again how important to listen to our own instincts sometimes.

Ok, Sharilynn, thanks for joining the conversation. Yes, my mother had a hysterectomy, but ovaries left intact but probably weakened. But with all this brain decoding work, there have been a lot of very specific correlations made between brain focii, parts of the body, social contexts, etc. One thing my doctor said is that it is traditionally the oldest daughter's role (me!) to not have her own family so that she can take care of the parents.

And reading Lindy's comments also - actually much of this work is partially based on the theory that our brains and behavior are actually still very much tied to animal behavior (flight and fight, et.) The question of free will in all of this - well, a post-modern question in some ways, and one that always to me had an uneasy relationship to Freud's work, for instance...But when you look at all of the huge factors that even surrounded our own conceptions and births - what was going on current event-wise at the time, how one's parents felt about those events and their own roles in them, what expectations and unfulfilled plans or dreams they had surrounding one's conception - it's huge and it all plays a part in what shapes us and what we take forward.

I think looking at what befalls us through this context though does a whole lot to mitigate any sense of blame or guilt - and when you realize that no matter how crappy things were for one's ancestors or what crappy decisions they made, they gave you life, which wouldn't have happened otherwise. Now it seems like people across a whole generational spectrum could have a chance to address the wrongs of entire wars or large-scale human conflicts, starting with their own bodies and cells that mirror on a microcosmic level what was happening in several generations of history, and then to right those so they need go no further. So it's no longer "you got sick, so you go off by yourself and fix it," but that many people perhaps get sick as a way of bearing things so that other family members don't have to - but then perhaps a family can all recognize that this happened to all of them, come together as an extended family and super support the sick person until they get better... Then the waves of healing ripple outward further and further, until we get past the point of drawing lines in the sand, and "your dad did this to my dad, so you're going to pay" and on and on ito endless cycles of recrimination. And we say "the buck stops here, in my body, and my quest to try my best to resolve this very specific and physical manifestation of society-wide trauma."

Things are less scary when you change the lens sometimes.....I've never understood those Stage 1, Stage II things - how do they serve us other than maybe you will get your will written sooner...beyond that, does it tell you how to live any better, any more positively? And why decide what the outcome will be before it happens...there's this idea that we should all be man enough to face the truth of scientific verdicts about us. But then there's Lou Gehrig, who didn't really get the truth after all...

My Swiss doctor says that every healing is an act of love. The new medicine.

A higher level...
 

Wow, Fiona. This is simply amazing news and really proves how symbiotic the relationship between our emotions, mind, and body. I have been thinking in terms of muscle memory but only in the context of wanting them to move again effortlessly...this philosophy of healing takes that concept to an entirely new level.

It all makes perfect sense too. I don't have any dramatic historical past relationship, but this does make me think how a tremor has been in our family through three generations now. I happen to have taken it to the next level, why I don't know, but I do hope it ends with me and my son lives his life without ever knowing this beyond what he sees in me.

I was just noting too how odd it is that now on levodopa, i feel less anxious than i ever did though doctors seem to think I am having some weird psychosomatic manifestations of stress and anxiety...that is outwardly i appaer normal, and on the inside I don't have the gnawing at my gut sort of anxiety that I lived nearly every moment when in my twenties. Now I don't feel anxious, yet at times I go to walk and do not feel like I have any legs. It seems like freezing but it is beyond the state of FOG. All I can figure is that it is an extreme reaction to acute stress I had experienced at work for two months, and it was my entire being shutting down and saying 'uncle'. I am faced with returning to the toxic work environment that started it all and have decided to heed the message being sent.

Even though we think we have it under control, our bodies and minds find outlets for us or an escape valve when we do not take care of ourselves well enough. It seems like in PD, our symptoms, like Fiona's mom's dystonic tremor are that escape valve- think of how exacerbated they are by stress.

Laura

I think looking at what befalls us through this context though does a whole lot to mitigate any sense of blame or guilt - and when you realize that no matter how crappy things were for one's ancestors or what crappy decisions they made, they gave you life, which wouldn't have happened otherwise. Now it seems like people across a whole generational spectrum could have a chance to address the wrongs of entire wars or large-scale human conflicts, starting with their own bodies and cells that mirror on a microcosmic level what was happening in several generations of history, and then to right those so they need go no further. So it's no longer "you got sick, so you go off by yourself and fix it," but that many people perhaps get sick as a way of bearing things so that other family members don't have to - but then perhaps a family can all recognize that this happened to all of them, come together as an extended family and super support the sick person until they get better... Then the waves of healing ripple outward further and further, until we get past the point of drawing lines in the sand, and "your dad did this to my dad, so you're going to pay" and on and on ito endless cycles of recrimination. And we say "the buck stops here, in my body, and my quest to try my best to resolve this very specific and physical manifestation of society-wide trauma."

My Swiss doctor says that every healing is an act of love. The new medicine.[/QUOTE]


Fiona you articulated that beautifully!

The concept that we can presently heal the generations before us places time in a whole different non-linear context. Then there is the subject of parallel lives come into this conversation... (anyone in here a fan of the TV series "LOST"?) ....my favorite tv show as a child was "Lost in Space"!

Granted that focus is the paradox characterizing our dilemma with movement...we deliberate to be free yet mind over matter becomes an old brain entrenched habit that leaves us frozen in our tracks or with medication fluttering likebrittle leaves in the wind. ohhhh how i long to be the expression of sublime joy and effortlessness. Nikola Tesla said his mother had such dexterity she could tie a knot with an eyelash....

How can we heal without love??? to my mind living a lie won't invite miracles and the ONLY thing that heals is love...and there is healing of cancer , parkinsons everything . if we don't believe in love what else is there? give me the choice of healing my body or my soul and I'll take the latter with the knowledge that the former will follow.

this is not to say that healing can only take place when we've met ALL of our personal demons --you know...pride, shame, blame , anger etc. sometimes a door opens, a new pathway emerges when we clear a roadblock (a memory of our own or perhaps one stored in our DNA? its amazing how coming to terms can be enough sometimes and others we just have to keep digging. some peope heal in an instant - so we have to be patient.

I would venture a guess that a LOT of us in here don't enjoy much support from our family of origin or maybe very little at all and for you here is a poem:

from walt whitman;

I exist as I am, and that is enough,

If no other in the world be aware I sit content

And if each and all be aware I sit content.

One world is aware, and by far the largest to me, and that

is myself,

and whether I come to my own today, or in ten thousand

or ten million years,

I can cheerfully take it now, or with equal cheerfulness I

can wait...

I laugh at what you call dissolution,

And I know the amplitude of time.

I can wait.


thx for sharing,
md

mind - body, stress
 

Medicine is only beginning to recognize the role of stress in life. Yet it is probably the primary force in PD. So many of us have gone through hell that we should have our own gate. It is a factor in our lives; it kicked off our symptoms and can hasten our decline; it played a big role in our pre-PD years all the way back to the womb; maternal stress formed us; and if that weren't enough, the suffering of our maternal ancestors at the hands of our paternal against the backdrop of societal indifference still echoes in our ears.

The physical component of all this is a complex structure like some fantastic tinker toy construct except that the wooden hubs of our childhood are not fixed but instead are free to slide in response to our environment. But they slide only one way and are devilishly hard to move back to where they were. It makes perfect sense from a survival standpoint - If the danger was great enough to shift things around then prudence dictates that we err on the side of caution.

Unfortunately this multi-dimensional time cube evolved in a jungle where terror erupted quickly and was over before you knew it. Acute stress. Shove one of these sliding tinker toys and quickly release it and it slides back. Just fifty years before Dr. P's infamous pamphlet, the Industrial Revolution brought chronic stress - the tinker toy was shoved and held in place until the warpage took old.

We were not allowed to reset even between generations. Insult was passed down through epigenetic and social memories - preserved in the complex structures that we are. We are the canaries in the mine.

It is continually nice to hear from everyone - Jon, Girija, Carey, Paula, Sharilynn again - thanks for the beautiful poem. Mr. Everett - always a pleasure. Lindy, Laura - such beautiful words as always. In fact, your Honor, I would submit as Exhibit A for the Defense in the matter of Dementia Vs. Parkinson's Patient, the collected words of an amazing bunch of people who far from having lost their minds, seem to have heightened them....

I have been reading ol' cs posts, and feel so strongly the cry out of pain and the horrible loss of love, and it is indeed almost unbearable what he and many of us go through. And I think it is so much - well, the opposite of what we need obviously. We could do so much if somehow our families and communities came to embrace each of its "fallen" with love, compassion, involvement..... This is such a given that I'm a little embarassed just articulating, other than to say out loud once again, things can often really suck in terms of social support for the chronically ill. I feel that doing something to address that is probably the most important work that the medical field could turn its attention to, and would have by far the greatest reaching impact if we could make some real change there....

Here is a link to some information about German New Medicine which laid some of the groundwork for the doctor I've been working with and his colleagues. The original work was a lot about cancer, but much applicable to our various situations here...

http://www.healingcancernaturally.com/hamer.html

PLEZ spill the beans . . .
 

just spill a few beans, plez, Fiona.

When you say, "the depressing absolutism of prognosis that we are immediately labeled with," that tells me that whatever you are doing must be affiliated with the "mental" you, instead of the physical. I very much subscribe to that philosophy. People say "You are what you eat;" and I also add "You are what you think."

This became very evident listening to the doctors' discussions while attending the recent NIH Shan Neurological conference. If one can "think" oneself as much as 30-40% improved, and science cannot prove it statistically, then why oh why isn't placebo effect used therapeutically?

I am so looking forward to what NIH comes up with for recommendations. I contend that there is not room in one's brain for thoughts of wellness and a surgical instrument, too. What I mean is if science doesn't accept the "think thyself well" rule, then forget any invasive procedure until they can.

Am I making any sense?

Glad you are feeling better no matter what, fiona.

Peg

fiona,
has it anything to do with what is called "conversion disorder"?

from toxins to anger to activism to knowledge to faith
 

in something or someone.


ttp://www.beyondpesticides.org/health/parkinsonsdisease.htm

This is just one of many articles we have read about toxins causing pd. We seem to be pretty sure of that. So according to this theory the toxins can be survived better by those who are emotionally sound, with less trauma, but those who have a trauma, and there are people here who have had severe trauma ..likely all of us on this forum....including losing siblings and suicide in the family, losing children.....then the trauma in combinaton ( and with different circumstances cancer, etc.) actually changes our cells.
No surprises in the article in the link above just a review of toxins.

what is different is the healing process that fiona has gone to great lengths to discover for herself from the mountains of south america to europe. i find it very significant that someone's doctor said it was love that heals. All we can do is read you fiona, and that us important because most of use can't go where you go .. your sharing is important.

I know we all could give an example of someone we lost who was long suffering and emotionally mistreated..who held it all in and just quietly gave up. i can think of many examples, one being my high school guidance counselor who was a friend of my mother's, and whose wife sang with my mother in a trio at banquets and weddings.

One day his wife up and left him for another man. She said she never loved him and stayed with him for the children. He was devastated, got cancer and died just like that. He died of a broken heart which is just another way of saying it but now we are learning what a broken heart really is.

Without his wife and children he didn't want to live - had a death wish to escape the pain as Imad suggests people do. i still feel terrible about it if i think about it. he was so tactful with me but of course called my mother when i said i wanted to be a beautician in the 7th grade -- was spending 45 minutes in the morning teasing my hair and fiigured i could do that. Styling salons nowadays can bring in money but i wouldn't have had the head to own one. So my mother worked on my aspirations. lol

There is less and less love in this world; there is hate everywhere. And more illness and death. everyone must find his own way and leave other people who chose a different way alone. Aetheists have a saying that they are good people without the promise of an afterlife. if that is the quote that defines you, in derision and superiority of those who do believe in an afterlife by nature, i would ask, " can you explain that without offending anyone?" the definition contradicts itself by its nature. so we don't try to change anyone.

Acceptance works and with this many people it could be healing.

Fiona has described without naming what many of us who have faith in a spiritual dimension believe. But Fiona may have a different spiritual imagery and obviously it includes love at some level of definition and is reflected in a kinder ,gentler Fiona.

...i can feel a different Fiona from the one who came into the forum much more challenging and sometimes angry (?) [ who didn't? lol- we were all angry !!] what a mess we were and amazingly mike fox had much to do with it...not intentionally [ he was the only one who understood it having dealt with celebrity for 20 years already] we came out of that chat room and into this forum loudly and angrily.

Toadie if you are reading this i know you remember it all. So does Jaye.we now are communicating in interesting ways and are very up to date from the various contributions.

we all can't go to south america or europe fiona but you have brought it to us and that is a message we are supposed to hear ....life just works that way all the time.

thanks fiona lots to explore. Fiona's doctors are making some very bold statments and i have not read it all yet. but we already knew it at some level, i think.

well just check the clock and there it is - my sinemet ramble but with less whining and more good will.

this is at the heart and soul of the matter.

paula

Dear Fiona,
Your post is an amazing critique of modern medicine and I am thrilled that your long 20 years journey with illness has led you to the realisation that illness is a manifestation of our whole being trying to deal with old child trauma as well as present stress.
In many old cultures the word doctor does net exist and is replaced by the word "hakeem" which means ‘The wise man’. Illness was considered to be caused by disharmony between the internal constituents of person's inner world of thought and emotion, or a disharmony with external world including family, society and the universe. Therefore, the Hakeem never deals with any illness in separation of the whole person, family and society.
In contrast, modern medicine is modeled in a way that considers a human being as machine and illness is due to a faulty part, which needs to be repaired (or replaced).
So, for example, if you have a symptom or pain in the abdomen you will be referred to the specialist dealing with digestive system and the specialist will make the tests (usually highly mechanized) and he will identify the faulty part and rarely go beyond that such as discussing life style and the emotional state of the patient. Moreover, the specialist has no interest if the problem is outside his specialization area and he will advise you to go and see another specialist.
The modern medicine has been extremely successful in treating (providing quick fix) to most illnesses but many times the illness returns because the deep hidden cause of illness is not dealt with.
This approach of dealing with illness through isolating "the faulty part" fails miserably in treating illnesses which is obviously involves the whole body such as cancer.
Another example is PD which was thought to be caused singly by the death of the dopamine producing region of the brain but more recently it is proved that it is much more illusive and other areas of the brain are involved. The brain, perhaps more than any other part of the body is whole structure incredibly interweaved and interdependent that makes it hard to believe by me that it is merely a dopamine loss illness.
So where all this lead us. How many of us has the strength, the imagination, the resilience that you dear Fiona has ? How many of us can challenge the medical establishment which enforces its text book and approved medications ?
A suffering PD patient has normally no option but take sinemet and other dozens of prescriptions opting for temporary relief only to discover later that the symptom relief medicines has side effects which may be more devastating.
Waiting for your next update
Imad

"Lest you think Parkinson's dementia has finally set in for this citizen - well, it hasn't. But a lot is changing for me.... ok, so this summer I went to Europe and was re-evaluated, with the conclusion that I don't have PD and never did"


huh? i would love to get more specifics on this.

Me too Soccertese. Fiona, can you please fill us in?

The burden, it was raised
 

from the New Isaiah: approximately, from blurred memory, he called out from a distance, and he said something like this:

Show me where you have been wounded
In every atom I will feel the pain
written on my heart in burning letters

that's all I know
I do not know the rest

I was bound to a burden
but the burden, it was raised
I can no longer keep this secret
Bless the name, the name be praised

PD - a masked bandit
 

We lived with"Festus" a fawn-colored pug for over 15 years. A few summers ago we made the very difficult decision to have him euthanized. Because he had little raccoon eyes, my husband nicknamed him the "Black Masked Bandit." I think that is a good nickname for what we're discussing in this thread.

Parkinson's has to carry more ambiguity than all of the other neurological illnesses combined. First, you will have lost 75-89% of your neurons before that first twitch in your finger or foot dragging occurs. Second, doctors diagnose it by "observing" your symptoms. Third, I don't see very many scientist putting the pieces of the puzzle together.

I didn't have time to research this, but has anyone surveyed PWP to see if trauma preceded diagnosis? There surely is some work in psychology or Psychiatry that has done this.

I have often thought that the medication may be what continues the symptoms (but that's reserved for another long post).

Everyone knows that stress bathes our CNS with toxins, so why can't we bathe it in some chemical good for our brains?

Fiona - your misdiagnosis scares the #@!$% out of me. I am happy for your improvement, but hope you stick around to help solve this puzzle.
Peg

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

Fiona
 

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.:hug:

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!

liberating times
 

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.