Parkinson's Disease Tulip


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Old 07-17-2010, 09:31 PM #1
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Default The International Consortium for Parkinson's Education

Until someone comes up with a better name, I suggest that we refer to this as the ICPE or the Consortium.

OK, I will start by trying to see just how much I can convey on one side of a newsletter.

Lindy, am I right that you are up on everyone's individual skills? Who is the logical one to design a template for it? Yourself?

I guess we should establish a thread for this. I am going to paste this in to a new one and let's officially move there as of now.....And here we are.

Some basic questions-
Do we want to make this a private thread or wait and see? Quite honestly, I am not one for long debate. That's one reason I am willing to do all of a given section. Hec, I'm a Parkie. But I will submit everything at logical points for review and revision.

OK, the floor is open. I will be back tomorrow with six major topic areas and a blurb about ICPE and why it is needed.
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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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Bob Dawson (07-18-2010)

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Old 07-17-2010, 09:45 PM #2
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In no particular order yet-

The real nature of PD and its impact

Disquiet in the patient community

The patient-neuro relationship

The need for humility by all parties

New Directions are needed

At breakfast, the chicken is involved but the pig is committed - the need for patient influence upon future research.

More to come. Good night.
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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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Old 07-17-2010, 11:31 PM #3
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I sense some empowering coming on and will be in on the ground floor.

ICPE?

The I is good
C def from wiki A consortium is an association of two or more individuals, companies, organizations or governments (or any combination of these entities) with the objective of participating in a common activity or pooling their resources for achieving a common goal.

So C is good for me.
P is good
E is good

All good for the name IMO

Jak

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Originally Posted by reverett123 View Post
Until someone comes up with a better name, I suggest that we refer to this as the ICPE or the Consortium.

OK, I will start by trying to see just how much I can convey on one side of a newsletter.

Lindy, am I right that you are up on everyone's individual skills? Who is the logical one to design a template for it? Yourself?

I guess we should establish a thread for this. I am going to paste this in to a new one and let's officially move there as of now.....And here we are.

Some basic questions-
Do we want to make this a private thread or wait and see? Quite honestly, I am not one for long debate. That's one reason I am willing to do all of a given section. Hec, I'm a Parkie. But I will submit everything at logical points for review and revision.

OK, the floor is open. I will be back tomorrow with six major topic areas and a blurb about ICPE and why it is needed.
__________________
They call you heartless: but your heart is true, and I love the bashfulness of your goodwill. Ye are ashamed of your flow, and others are ashamed of their ebb. Ye are ugly? Well then, my brethren, take the sublime about you, the mantle of the ugly! - Thus spake Zarathustra.
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Old 07-18-2010, 07:35 AM #4
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it seems you want to be an advocacy group critical of the status quo, not an objective educational group. something like "parkinson's alliance for better research and treatment" might be better. kind of tea partyish.
why beat around the bush? saying you were an educational group would be very insincere imho.
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Old 07-18-2010, 07:44 AM #5
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I have been made aware of some things nearing completion that I don't want to upset in any way, so I am going to temporarily chill on this although I will be working on it for later use. There has been some good work done over the last year.
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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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