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Old 03-16-2013, 09:49 AM
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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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Greetings and welcome! Sorry to see you here but glad to help. You have already gotten valuable advice, particularly from Laura and Soccertese and I echo most of it. In order to save space, however, I will try to address my contribution to expand on theirs rather than to duplicate it.

On your "virginal" state vis-a-vis medication- You are very fortunate to have some important decisions to make. As Laura pointed out, most of us had them made by others who had their own biases. There are a number of areas that are open for you to explore. You cannot cover them all so take some time to think about it and share your experience here.

On DBS, Ldopa, etc.- Something about DBS doesn't feel right to me. Too much of little boys playing with toys. It seems to replace some of the lost manufacturing ability where Ldopa is concerned but it does not claim to reverse damage nor does it claim to improve function. It also does not seem to alter the future course of the disease and degradation continues unabated. The bottom line is that it seems to be an expensive and very risky replacement for sinemet. It brings to mind the old adage of, "Just because we can do it does not mean that we SHOULD do it."

On dyskinesia- My own opinion is that it is the result of hypersensitization of receptors (presumably those for dopamine. I base this entirely on observation of my own problems with it and may be totally wrong. But certain things set me off twitching and twisting. Bright light does it, especially if it is brighter in one visual field than the other. Environmental stressors such as loud sound will do it as will social stressors such as confrontation. Talking on the phone (especially to my mother) will set me off. It comes and goes with ingestion of sinemet.

On how to start out- I would give some thought on experimenting with advanced alternatives at first. Things that depend upon your "virginal" status and that you can never have the opportunity again. For example, I have wondered what would be he outcome if I used mucuna like a condiment at the dinner table and thereby maintained a steady state condition that I would monitor for new symptom "breakouts".

Finally, on the matter of just when to start Ldopa. I vote that it is best to keep the system at as low a stress level as possible. Stress is the enemy and nothing is quite as stressful as being frozen in place in a busy parking lot as cars whip by.

Good luck - Rick
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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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