Originally Posted by pegleg

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

Originally Posted by Fiona

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

Originally Posted by harley

currently renting room in practitioner of german new medicines home