... 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

....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

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!

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