[Fiona]

Hi everyone,
I haven't written for a while, and I have sorely missed everyone. I went to India in the fall, and since my return I have been examining my life and my illness like never before. And it's been hard. I put up a good fight for a long time, but now things have to change in a really fundamental way.

I have been very depressed. All the writing and raging and researching I've done on the PD subject over the past couple of years has left me feeling of course very cynical about the mainstream PD world, and with a great feeling of weariness. But more than ever I feel increasingly clear that many of the essential paradigms about PD are wrong. They are based on a bunch of assumptions, and judgments, and market concerns, and lack of disclosure, and they use our fear to make a continuing profit on us possible. Ok, nothing new so far in this rant.

First of all: India, and those who are interested in the Ayurvedic method. There are a number of things to say, but overall those Ayurvedic guys and their medicines are for real, and are more genuine and powerful than most things out there. At the AYurvedic hospital I went to I encountered amazing people - a UN official, a surgeon from Mt. Sinai in NYC - as fellow patients. Cultural differences did pose some problems, and I would like to go back and renegotiate some of the issues, but overall those people are operating on a plane of thinking and sincerity that we very rarely have reflected back to us in the medical situation in the US anyway.

Now some of my recent conclusions as I get really determined to go forward with things. I have been extremely depressed and struggled mightily with the issue of suicide. I have laid it aside by recognizing that I do want to live, hence for myself I think it would be immoral to take my own life, and that I must live "all the appointed days." That is unless I saw a noble purpose to be served by my death, in which case I would reconsider, but until that time I have decided to leave it in the hands of the Almighty, and try to be as graceful as possible. Without faking it. So no matter how bad I feel, I have pretty much put that issue aside.

Here are some things which I think we really have to consider as we go about engineering our futures.

The methods for diagnosing PD are woefully inadequate. The methods for clinical assessment along the way are also woefully inadequate. I think misdiagnosis, or a very shallow understanding of the various complications that will become labelled Parkinson's, are rampant. BUT we all get herded into a mentality that we are all going to deteriorate inevitably. I think this fear is incredibly powerful and becomes a self-fulfilling prophecy for many, and an agent to control our thinking.

But it is more complicated than that. The medications that we are provided are very simplistically designed in many ways. They do that Western thing of trying to isolate a huge array of symptomology and individual difference down to one thing: dopamine. And the synthetic replacement of that skews the whole matrix of neurotransmitters so that inevitably our bodies wind up compromised in multiple ways. And our systems become increasingly dependent on this stuff so that we have no hope of ever regaining our own natural function. But we don't expect it because we are told it is impossible.

I was looking at some advertising for Stalevo. It said something like "you may experience the re-emergence of your symptoms." It firmly cast any problems developed through taking this substance as part of our innate pathology, rather than perhaps acknowledging that having such a mono-emphasis on one particular chemical could eventually create its own problems.
So we fearfuly and tearfully think, Well, I am just getting worse and there's nothing to be done about it.

In my 18 years of treatment with this disease, no one has ever attempted to balance my neurotransmitters, or even to assess what nutritional depletion I may be experiencing from this drug onslaught. This is such bad science, yet we think our neurologists are so smart and know so much better than we do. Some of the stuff I've heard them say is really laughable - :"unless you have Parkinson's, you will show absolutely no response to a levodopa pill." C'mon. As if there was any credibility in the idea that PD is one thing...

I have had the opportunity to experience chemical agents that release a lot of serotonin into your system, and believe me, it chased my symptoms away like nothing else. So I've known for a long time that it's not just about dopamine. But how to find someone smart enough and willing enough to do the work of helping me balance? It's a problem.

On the balance, altho I've been depressed, I feel a little hopeful because I really think that if some of the base assumptions can be examined in a more mature way, then there may be many possibilities for improving our situations. But I really think it's time to start challenging lazy thinking and treatment, start pulling all the suppressed research out of the holes they''ve been pushed into. Reading today about the sudden discovery that anti-depressants don't work for most people - and then the fact that out of 75 or so studies, half had positive conclusions for the drugs in question, and half negative or inconclusive. Yet somehow all the positive ones were published in major journals, and almost none of the negative ones were, if they were published at all. And they want us to go on respecting their science???

ANd what about all that info in those quiet little patent applications that never seems to become part of the discussion? Enough.

This is why I really don't care about clinical trials and registries and what have you. Until intelligent leadership is shown in managing that information, I ain't got the time, and it's just a distraction, and that dreaded term - false hope.

Our medicine has to get out from under the profit-making impetus, or it will never heal us.

I hope to have the energy to get back into the discussion. It's been a tough year, but I care about you all very much.
God bless.
Fiona

[violet green]

Thank you Fiona, for your thoughtful post and for returning with wisdom to share. I especially like your statement:

"This is why I really don't care about clinical trials and registries and what have you. Until intelligent leadership is shown in managing that information, I ain't got the time, and it's just a distraction, and that dreaded term - false hope."

But I do hope we can work in a new direction.

[reverett123]

And so sorry about your depression.
I share your feelings about the sorry state of the PD world. So many sheep stumbling toward the cliff it seems at times. I've been spending some time over at Patients Like Me and, if you want to get depressed, that's the place to do it. They know so little and have so much blind faith in the system. Most of those who post have only been diagnosed two to five years and really think that they know what they are dealing with. It is morbidly laughable at times.

But enough of that. Your comment on registries and such got me to thinking. Could we do our own registry of promises unexplored? Say, an analysis of those patents, the possibilities of dextromethorphan, methylene blue, amino acid supplementation, electrolyte replacement, and other areas that are so obviously neglected? I'm sure there are others, but those are floating on my own surface at the moment.

Another might be the concept of the nervous system being so sensitive to what are called "bi-phasic" reactions - that drugs at extremely low doses have totally different effects than at the ones usually employeed. The difference between the dextromethorphan dose that Robert uses for PD and that stated on the label for cough is smaller by a factor of four or more. Use the larger dose and the receptors you are trying to work with get saturated and you get a negative effect. I seem to recall a similar result being reported for both turmeric and ginseng. If three drugs exhibit that, how many more do so? Oh, and methylene blue is purportedly another. Maybe they really are using a hammer when they need something far more subtle.

Well, Fiona, you've got me to ponderin' again. Welcome back.
-Rick

[pegleg]

Fiona
It's about time you got back here. And I recognize in you something that I struggle with daily: depression. But one "good" 'thing about depression is that it makes you stop and think. And you have thought this through and came up with this conclusion: " it would be immoral to take my own life, and that I must live "all the appointed days." That is unless I saw a noble purpose to be served by my death, in which case I would reconsider, but until that time I have decided to leave it in the hands of the Almighty."

Leaving your life it in the hands of the Almight is the best advice I could give you. But I caution you about this thought: "unless I saw a noble purpose to be served by my death, in which case I would reconsider." There's nothing noble about death, and even less noble when we try to choose when we should leave this earth. You have a noble purpose to LIVE. You may think that you would not be missed, but you are WRONG - everybody has a purpose. Some people spend their whole lives looking for it, but it's there. Promise me you will share with us your thoughts if they start going in that direction.

You brought up some thought-provoking topics:
QUOTED (Fiona)
I feel increasingly clear that many of the essential paradigms about PD are wrong. They are based on a bunch of assumptions, and judgments, and market concerns, and lack of disclosure, and they use our fear to make a continuing profit on us possible.

This is very, VERY true! Research and how PD is being managed needs to be totally redesigned. I think we can help solve this dilemma together.

Ayurvedic method - This whole-body approach is catching on globally. However, because such therapies do not conform to the theory of Western Medicine, it probably wwon't get far in the US.

QUOTED (Fiona)
we all get herded into a mentality that we are all going to deteriorate inevitably. I think this fear is incredibly powerful and becomes a self-fulfilling prophecy for many, and an agent to control our thinking

In my 18 years of treatment with this disease, no one has ever attempted to balance my neurotransmitters, or even to assess what nutritional depletion I may be experiencing from this drug onslaught.
See post:
"Chemical Balancing Act or Mental Management?"
http://neurotalk.psychcentral.com/thread111914.html

I agree that this is needed. The efficacy of some medications is often dependent on our diet. I ate at a Chinese restauant the other day and thought I wwwould die later in the evening. Although the resstaurant staff denied its use, I'm sure I got into a little MSG.

I'n not even going into diagnosing PD. Like the song often sung around the New Year celebrations, "Let there be peace on earth, and let it begin with me," we all need to be chanting, "Let there be change on earth, and let it begin with me."

Thanks again for your pos.
Peg

[lindylanka]

Happy New Year Fiona, you have been missed.

It is very good to hear your voice here again........

[paula_w]

Beautifully expressing that you are in sync, current and you summarize it with spiritual accents that only you can create, Fiona.

welcome back, don't overdue it. but there is more than ever possible to do right now. You have a grip on the feelings among the advanced pd community. It's stressful...but enlightening. just read if you can or are up to it.

you are missed,
paula

[indigogo]

Fiona! What a welcome voice! As always, your point of view is sharply in focus.

Some good news from the West Coast: Dr. Laurie Mischley spoke at the annual Hope Conference in Seattle in November. She is a naturopathic doctor with a practice in Seattle's University District, and although she didn't have the time to include it in her talk, is a proponent of Ayurvedic medicine.

She has a book coming out soon - Natural Therapies for Parkinson's Disease

You can read about her practice here: http://www.seattleintegrativemedicin...iemichley.html

So good to hear your voice!

[imark3000]

Fiona,
One can only appreciate your posts and the spirit behind them which made your 18 long years of PD a testimony of the human ability to survive, discover and adapt.
The key word for me is to live and adapt with or without medication.
The big philosophical question ‘what for’ is always there but set aside for a while as I realize that it makes all of us (wpd's and without) equal in facing our destiny.
Imad

[Fiona]

thanks so much, everyone, for weighing in... and I'm waving hello to all you others as well. Thanks so much for reaching out about the suicide thing - it really does help and means so much...about the noble death - well, you know if it was either me or a young mother and somebody had to go, I'm not sure I wouldn't volunteer, but at least right now that's not an everyday kinda choice!

I think we are coming up on an interesting time and that there will be more opportunities for any and all of us to feel better, although we may have to be bit pushy to access them.

So we keep talking and looking and questioning and we will find things. And we will get better.

[tinglytoes]

Hi Fiona, the India reference caught my eye and thought I would read more and then chime in. I have other seriously progressive, chronic health issues. But one thing I recognize is the reference to ending it all as a choice. I am glad the support so far has helped your perspective change. Going to India must have been a big trip which by it's radically different environment is bound to create some changes. The generalizations of how western medicine, along with western attitudes about suffering, are one of the most thought provoking and sometimes depressing issues to face every day. That you offer your own honestvoice and speak up is invaluable to everyone.

I have not had the good fortune to go to India in this lifetime. I am a student of yoga however (and not just hatha). I am curious about the ayurvedic tx protocol for pd. Would you recomend this here in the US? Forgetting about the high cost for the moment. How would you compare the Indian style of care, to our style over here? Are there not expectations for the clearing out of toxins in Ayurveda leaving one depleted and depressed for a time? I know several friends who go over for different reasons to get tx. And thought the rebuilding process is the real work long after the detox is finished.The herbal regeime, the periodic re-visiting of tx and dietary changes etc...

As for the surrendering to what IS. I once had the experience of knowing in my deepest cells, that for as long as "Lord Ram" or (jesus for some) wanted me to be here, I would have to do my best for His sake, for it is completely not my choice, I can only surrender. This re-frame helped me, and I pass it on, in case it helps you someday. There is a reason you are here. Filling us in on another way to consider treat chronic illness is a good reason. Thanks for your honest sharing Best Wishes TT