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11-24-2008, 09:46 PM | #1 | ||
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In Remembrance
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General chat as before - a chat room will be created shortly before it begins.
Meeting: 4:00 ET p.m. Tuesday: Nov. 25 That's tomorrow. This meeting is important because it has possibilities for us to become public as an entity....so we have to define who we are. Hopefully, we all know where we are, most of the time anyway. Oh to be kidding! lol It's urgent ...needs immediate attention. open to all - bring your ideas. mahalo, paula
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paula "Time is not neutral for those who have pd or for those who will get it." |
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11-25-2008, 05:05 PM | #2 | ||
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In Remembrance
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....and I forgot. Just got home. My apologies.
if anyone was going to attend and would like to reschedule, please let me know. paula
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paula "Time is not neutral for those who have pd or for those who will get it." |
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11-25-2008, 05:30 PM | #3 | ||
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a re-schedule would be good! |
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11-26-2008, 05:03 PM | #4 | ||
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I am interested, please re-schedule it. thanks
Girija |
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11-26-2008, 07:44 PM | #5 | |||
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In Remembrance
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...hello to girija. Glad to see you back.
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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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11-26-2008, 10:00 PM | #6 | ||
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In Remembrance
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Cere 120 failed to meet endpoints. I didn't see that one coming altho it is not much of a surprise - researchers are saying publicly that it wasn't as good. I wonder if they truly believed it could be as good as GDNF. I was under the impression from the first mention of neurturin that it didn't work as well as GDNF. On the other hand, they had no choice, thanks to Amgen and made a historical attempt to be quick about it.
Neil asked, "what's next if the other gene therapies don't work?" Well there's this and that: http://michaeljfox.org/newsEvents_pa...cle.cfm?ID=419 http://michaeljfox.org/newsEvents_pa...cle.cfm?ID=418 Always hope for symptom improvement. But even Mike says not working to cure himself and the foundation makes no decision based on his circumstance. Look for People mag. next week. I would like to feel better, have had no delusions about a cure since GDNF . So now we are helping our children and grandchildren. I would still like to keep kickin as a "patient researcher" - it gives me something to neglect doing. Like there is a purpose behind my utterly pathetic energy bank that will someday emerge as a great discovery. .....i'm in a changing environment that is a bit like a carnival mixed with solid spirituality. It's getting better, and I am ready to roll up one sleeve at this now. Can we meet next Tuesday at 4:00 PM ET? I'll do my best to remember and will start the chat room shortly before 4. We heed expert advice on what kind of data is needed. We need pre-existing resources. I'm working on some collaborative ideas to help get us the boost we need to start. so next Tuesday at 4:00 pm. ET in the pd chat room.. I'll create one shortly before 4 and try to remember this time. Open to all who are interested. Thank you and Have a Happy Thanksgiving! paula adding: even my personality is med regulated. As I 'm writing this, I'm quite positive we can add to the valid mining of patient research. In the morning, citing my almost total incapacitation as demonstrated by the bizarre gyrations and effort necessary to make it to the bathroom, I berate myself for committing to another project when i have no energy for my own life. It takes a half day sometimes to wake up....then i'm out of depression and ready to write a database.
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paula "Time is not neutral for those who have pd or for those who will get it." Last edited by paula_w; 11-26-2008 at 10:23 PM. |
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11-27-2008, 05:59 PM | #7 | ||
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12-03-2008, 01:21 PM | #8 | |||
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In Remembrance
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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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