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

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"?

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?

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

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