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04-24-2008, 12:03 PM | #11 | ||
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Junior Member
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Are you saying that when you are medicated you have a 0 score.That would mean you have no symtoms of PD while medicated.
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04-24-2008, 12:56 PM | #12 | |||
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In Remembrance
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I rate it, however, at the best period in my daily cycle. So, on a given day I might move between the extremes with my highest scores when I first get up and my lowest (0) at late morning when things are working well. That is one reason I worked up the other system since the UPDRS didn't tell me how I was doing at a particular time of day, say, last year
I don't want anyone to read too much into it because it was not designed for anything but my own tracking and to be honest I could have done better on recording data, but the general improvement instead of decline is solid and important. I just wish the reasons why were clear..
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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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"Thanks for this!" says: | Sasha (04-24-2008) |
04-24-2008, 02:01 PM | #13 | ||
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Senior Member
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Reason for improvement? You have not changed meds during this time (unless I missed something) so that cannot be it. And by "change", I mean increase or add: if I remember correctly, you actually reduced meds during this time.
Doesn't sound like you embarked on any new physical exercise program, either, so that can't be it...although I understand that is really helping a lot of folks. That leaves your personal supplement regime (I'm assuming you combine that with healthy eating and no tap water)...so I think it's very encouraging to all. Everyone should try to keep track of how they feel so they, too, can monitor what works best for them. Don't forget the daily laughter quotient!! |
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04-24-2008, 05:03 PM | #14 | |||
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Member
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some tracking report Rick. Good skills. I note some of those reports date back to 07 where you were taking around 900mg per day of snmt, 700 of the faster release 100mg snmt and 200mg of the Controlled Release. How does that compare with what you are taking today? Is there others taking 1500mg or more of snmt per day? If so what is the outcome? How long have you been on that level. What is considered a safe level?
Great thread Rick.
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The true leaders of today are those who strive for a world where it's every citizen can enjoy the benefits of scientific enlightenment and technological progress. GO HARD>>>>SCIENCE |
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04-24-2008, 06:29 PM | #15 | |||
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In Remembrance
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If I had known tht I'd get results I would have minute detail 24/7 but who'd uh thunk it?
Before I started the mucuna trial and near the end of the ginseng trial six or eight weeks ago, I was officially taking 3x sinemet CR 200/50 and 6x requip 4 mg and six months ago I jettisoned 1x eldepryl 5 mg as well as a blood pressure drug called hyzaar. The ginseng was supposed to normalize blood pressure and it did (just now checked at 112/65 !). The eldepryl was a potential problem with the dex cough syrup (which I still haven't gotten around to). And a few months prior to that I was up to 8x requp 4 mg which even I knew was too much. Through most of that period it was a slow start in the mornings, dragile but mostly functional all day and freezing from about 8 PM onward. Today I started out with a half of one of the 50/200s, 1x requip 4 mg, and 10 g mucuna. At 10 AM I took another half of a 50/200 and another 4 mg requip but no mucuna. At 1 PM I took (I think) a repeat of the 10 AM At 4 PM it was 10 g of mucuna and one requip 4 mg. Normally I would have taken a final round at 8 PM (15 min ago) but I am functional and a bit dyskinetic so I am going to skip it until I start needing it. So totals for today are one and a half sinemet cr 50/200s and four requip. Darn, that's cutting the sinemet by half and the requip by a third! And considering the dyskinesia, I probably should have left out the 4 PM requip. I am impressed! The wait for turning on time is much shorter in the mornings and the freezing is probably a fourth what it was. And when I get up I am noticeably ore functional right out of the bed. You know, I've already figured out that there is more at work than just natural ldopa and I assumed that there was some carbidopa clone at work. ut a possibility that I just thought of is that there is something that is either increasin the number of or the sensitivity of recetors so that a little goes a long way. Hmm, this is getting interesting. -Rick Quote:
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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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04-24-2008, 10:31 PM | #16 | |||
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Member
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dayz to go before catching up with brilliant Neurology surgeon Dr D Mc, on Monday. I feel my meds are a little on the high side and that's attributtable to the difficulties of early last week where the meds did not kick in.
The meds are certainly kicking in now with my on times just about 24/7. I have no idea if that's a good thing, I suspect the meds will be adjusted down so another trial week looks likely. Having four hours on time between meds is awesome, I suspect that will need to be balanced against side effects that may eventuate through taking 1500mg day.
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