Thread: our experience
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Old 10-26-2008, 05:06 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
Default Excellent report!

Thanks very much. It is a great help to know where others have been. For myself (Symptoms 1992, Dx 2000), the biggest things I have found are alpha lipoic acid, acetyl-L-carnitine, red panax ginseng, and, most recently, potassium. Probably the most encouraging self-experiment conducted in the group is Ron Hutton's experience with curcumin. Ron has dealt with PD for years but gets along well with 100 to 200 mg of sinemet as of this morning. I don't know the numbers, but he was considerably higher in times past. There's a lot of good research behind it, too.

Your account pointed out something that seems common - new things work at first but then fade. That is a strange pattern to observe across so many individuals and so many substances. It is as though we shove a giant pendulum aside only to have it swing smoothly back into its path. That makes me think that there is a endocrine component at work. There is a concept called "homeostasis" which I translate as "balance" or "stability" and that is the constant goal of a living system. Just where that state falls is determined by "set points" which allows you to adjust to, for example, being born into a war zone. LIfe events can change those set points as well. Unfortunately for us, our set points are set wrong and we try something new in the way of symptomatic relief and get good results. But the underlying process gently pulls us back toward the set point. If we can move it....
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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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