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Old 06-14-2009, 09:38 PM
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reverett123 reverett123 is offline
In Remembrance
 
Join Date: Aug 2006
Posts: 3,772
15 yr Member
reverett123 reverett123 is offline
In Remembrance
reverett123's Avatar
 
Join Date: Aug 2006
Posts: 3,772
15 yr Member
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Here's even a starter that I have on my website:
"I write this in the seventeenth year of my "Parkinson's Experience." That's a long time in PD Land. I have earned the right to speak on the matter by simple attrition. I am going to take advantage of that and tell you the things that the other sites and the books and the doctors and the scientists don't.

1) You're screwed. You are trapped in a disease that falls at the junction of at least four scientific disciplines. No one has the Big Picture. So the neuro doesn't understand about the immune system and the gastro doesn't understand about the stress circuit. They don't know the cause. And they sure don't know the Cure.

2) If they find the Cure you probably won't get it. As a patient under treatment, you are worth a huge sum of money each year. With a Cure you are worth a huge sum of money a single year, then you're gone. If you doubt it, google "GDNF" + "Amgen".

3) Someone reassured you that a cure was just around the corner, didn't they? What did they tell you, five years? That's what they tell everyone.

4) Parkinson's will kill you and everyone who cares about you. Day by day. Little by little. Oh, you'll still breath, drool, and pee on yourself, but your life will be over.

Now that you know the truth, go to the next post and read it very carefully."

Do Not Go Gently Into The Night

"It dawns on all of us eventually. The cavalry is not coming and neither is the Cure. At least not in time. There are several reasons but they boil down to a lack of urgency. Science prefers to work slowly and carefully. That takes time. You don't have time. All you have are the days in the hourglass.

Most of us come to this realization late in the progress of the disease. We are exhausted, apathetic, unable to walk, and we don't get invited to conferences. It is too late by then for us to do much.

This is a warning and you best take it very seriously. Don't be a good patient. Start being a pain in the butt and do it now while you are still strong. You stand where the HIV victims stood thirty years ago - outside the convention hall in the rain. They forced their way in and were listened to."
__________________
Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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