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.

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.

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

Trixedee

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.

GregD

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

Girija

[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