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Old 08-07-2008, 12:16 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 PerryC said that the orgs are watching...

...this thread with alarm. I certainly hope so for our sakes as well as theirs. In fact, I would like to speak directly to their reps for a minute-

We are no more YOUR enemy than you are OURS. It is not that we seek to damage you in any way, but we do want your attention. And we do want you to recognize that things are going to change and that we intend to be the main influence upon that change. PWP are different. We are the overachievers and we just might pull it off.

Of the orgs, some will see this as a threat and attempt to either ignore it or negate it. That will be unfortunate and cost both sides. However, one or more of you see this for what it is - an opportunity to make your own organization(s) stand out from the herd, accomplish something, get good PR, attract donors, etc.

There is new energy here. It may well dissipate as it has in the past. But it may take another course and end up on the cover of Time magazine. Wouldn't it be great if you were on there with us? Reach out and PM somebody. But only if you mean it. Don't patronize.
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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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