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Old 10-24-2006, 11:29 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 on a more positive note

RLS, Godfather, and others-

I have a plan in its early stages. I intend to build a website with the intention of drawing together PD researchers within the following guidelines;
1- It would be organized as a collection of forums much like this one (NeuroTalk).
2- Membership would be limited to those who met criteria established by the administration. While the public could read the threads, only members could post.
3- Members would be either degreed researchers or lay researchers vetted by admin, with a special effort to attract PWP within those groups.
4- The effort would be cross-disciplinary- a pathologist with PD might well be more valuable than a neurologist, for example.
5- Members would be anonymous in the interest of free and open discussion.
6- The emphasis would be on breaking into new territories that traditional researchers avoid for various reasons.
7- The Net and its access to the great database of knowledge will provide the feedstock for the research. We are the first generation to have such a tool.
8- An emphasis upon the practical will be the order of the day. Things that a patient can benefit from immediately will always be preferred over things that "warrant further research."
9- Recognizing both the risks involved and the limited time frame we work under, a deviation from the usual lengthy process of research trials will be devised built upon minimizing risk while maximizing benefit. Extensive bibliographic work to identify likely avenues, careful self-trials, a call for volunteers, and publication for further consideration is one model.

I would like comment on this.
__________________
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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