Shake up your little world and listen for a minute

I''ve started this blasted letter a half-dozen times and I am getting tired of being charming. :-) So you are getting the plain spoken version.

How on God's green earth can anyone with PD be unaware of the importance of stress in the disease??? Those of us in the early stages thrive on it! We humbly brag about the load we carry, the hours we work, what a good job we do. We get high on the adrenaline and feel important. We are adrtenaline addicts.

But about the time we begin showing symptoms our relationship with stress changes and that surge of adrenaline hits us like a truck and leaves us shaking and broken on the side of the road. There are very few diseases that do like that and they are endocrine disorders. You are counting on a neurologist to save your bacon. It ain't gonna happen.

But PD is a lot more than that. Your immune system is hypervigilant and is a constant source of destruction in your brain. And your stomach gets crankier and crankier until they start wanting to put a tube in you to get your Cheerios down. Not to mention constipation.

They give you a pill that is forty years old. It was a darned site better than nothing back then but it wasn't a cure and it still isn't. It floods you with dopamine, but dopamine breaks down into toxic "metabolites" and kills a few neurons for good measure. And you seldom hear much about the fact that other neurotransmitters are low in PWP even though they have nothing to do with the neurons of the substantia nigra.

And don't kid yourself about it not being in your head. Psychogenic ("self produced") will kill you just as dead as any "real" disease. What are your ghosts and how have they affected you? The young salesman who was just here was trying to sell us a new age therapy called Emotional Freedom Technique. I know because I googled his site name and EFT is something that I learned from my wife who has benefitted greatly from it over the last 15 years. I, myself, have gained a great deal of self-knowledge and see links through my life that eerily lead to my PD symptoms.

The only thing we know about PD is that the current view will kill us. Time for something different.

5 Replies

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  • wow - some letter -- thanks - i think ....

  • Well spoken, more then you know. This passed Saturday my wife and I attended the memoral of one of our suport groups, more importantly my friend. You see in a last etempt to take back control of this bloody illness he asked to have his feeding tube removed so he could retain what dignity he had left.

    I plan to share your comments with my group on Thursday, and thank you for the time you toke to write it.

    My ablity to spell correctly seems to be gettring worse but I will continue to do my best.

    Kind Regards;

    Eric

  • So to summarise you have said

    1. The degree to which stress is involved in PD is underestimated.

    2. PD has an autoimune component to it.

    3. Yes, L-dopa is still the best PD drug we have, even after

    40 years work.

    4. L-dopa has a neurotoic effect.

    5. The power of the psychogenic aspect of PD or any disease

    for that matter is greater than is regularly allowed for.

    Perhaps I am out of date but there are a couple of things in

    your post that I thought had been concluded

    1. L-dopa does not have a neurotoxic effect

    2. There may or may not be an autoimune component to PD but

    it has not incontravertibly been demonstrated either way.

    You are obviously disgruntled about something but from your

    post I am a little unsure (in fact quite confused) what

    that something might be?

    Perhaps I might better understand your "disgruntlement" if

    you were to add extra focus to your posting?

    Kind regards

    Pete

  • test

  • I feel so much better now...

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