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!

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....

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.

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

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

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....