Thread: The MJFF
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Old 09-29-2012, 12:52 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
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I will point out that MJFF is the only org that actually listens to our little group in the person of Debi Brooks. It is unusual for a bunch like us to have access on that level. Part of the reason is that we keep things on a rational basis and another part is that when MJF first got his diagnosis he ended up getting help and support from the folks here although no one knew who he was. Yes, Debi and the others make a lot of money. But as anyone who has worked with a large non-profit can tell you, if they keep the funds flowing in at the right level then they have earned every dime. It isn't as easy as it looks.
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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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