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#1 | ||
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Member
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Hi everyone,
Times change. When I was first diagnosed, they didn't think there could be any kind of regeneration possible in the brain. Not to belittle efforts made in the past, but it seems like discussions of late have revealed quite a few people wanting and ready for something different than what we have had already. Should we do this? How should we go about it? Start with a core group and invite others down the line? Should all those interested retire to some private form of group communication so that we can hammer out our ideas or figure out what we want to do before we go public with it? What do you think? |
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"Thanks for this!" says: | DejaVu (06-22-2009) |
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#2 | ||
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In Remembrance
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look at what you stumble into just browsing here tonight...energy?.
Fiona, will get back to you but my first thought is thank you for asking. paula
__________________
paula "Time is not neutral for those who have pd or for those who will get it." |
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#3 | ||
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Member
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[Fiona,
thanks/ "How should we go about it? Start with a core group and invite others down the line? Should all those interested retire to some private form of group communication so that we can hammer out our ideas or figure out what we want to do before we go public with it? YES we should go on, and thinking about the ways to be productive. more later, just took mirapex......... Girija |
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#4 | |||
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In Remembrance
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I vote for the core group approach. Once we have our act together we can trot it out on the stage to see how the crowd reacts, but right now we need to focus on our view of the problem.
Quote:
__________________
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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"Thanks for this!" says: | pegleg (06-19-2009) |
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#5 | ||
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Member
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I agree with Rick. The best way is to form a core group or "committee" that can get things organized first. The committee members could even setup a charter so that the group can remain focused on goals rather than run ad hoc, which happens many times a group has been created. This not to say that a brain-storming session isn't out of the scene, nor are future changes not allowed once the charter is setup.
This is something I learned when working with my online classes. I had to participate with teams during each class. We were given projects that we had to complete as a group. Some members participated more than others, and some seemed to take over the group to run it themselves. With members spread worldwide, this can become a hassle for communication. One of the things I did learn from the online experience is that having a single meeting place, in my classroom it was the online team folder, to hold virtual meetings, and exchange ideas. The reason for the online meeting place was so no one was left out of the idea process. Once the intial group is setup, then you can present it to the public. With your framework in place, you'll have something to hold on to and build on frome the base. I hope this helps. John |
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#6 | ||
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Junior Member
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Sort of Like ...
Sort of like a national PD organization restricting access for patients untill they want that access to be used on their terms. Every bit of fragmentation whether through too many national orgs, too many individual web sites, too many groups, too many back rooms causes a weakening of the community no matter how well intentioned..... Say it in public. take care ,,, ken |
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#7 | |||
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Member
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We've "been there, done that"
we'll talk it to death. We need to DO it, NOT talk about it. |
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#8 | |||
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In Remembrance
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I agree. Back room. Aliases. Forged documents. The works.
__________________
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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