Quote:
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
|
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