Parkinson's Disease Tulip


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Old 10-05-2009, 05:37 PM #1
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Default You are what you eat!

Ron, your words were right on target. I have learned over the years to not eat until I am on or to wait at least an hour after I eat to expect my meds to work.

The movement specialist that I see in Atlanta (Emory) says most doctors don't like Sinemet CR because of its "unpredictability." A CR 25/100 is about 1/4 stronger (levadopa) than a regular 25/100. For this reason many have worse dyskinesia when they use CR.

Try some of those ideas that Rick mentioned - I've been thinking about trying them myself. And we who are "seasoned" (I've had PD for 15+ years) know what we're talking about when we say not to wait until you are "off" to medicate.

Peggy
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rose of his heart (10-06-2009)
Old 10-05-2009, 09:15 PM #2
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Originally Posted by pegleg View Post
The movement specialist that I see in Atlanta (Emory) says most doctors don't like Sinemet CR because of its "unpredictability." A CR 25/100 is about 1/4 stronger (levadopa) than a regular 25/100. For this reason many have worse dyskinesia when they use CR.

Try some of those ideas that Rick mentioned - I've been thinking about trying them myself. And we who are "seasoned" (I've had PD for 15+ years) know what we're talking about when we say not to wait until you are "off" to medicate.

Peggy
I love how I always learn something new here! Peg, thanks for sharing what your neurologist told you about CR. I've been doing really well but this weekend things went a little wonky due to stress; I have found that the CR seemed less predictable in going on. Now that I think of it, my doctor did mention that there can be a "skipped dosage" phenomenon with it where it never kicks in until next one.

I didn't know that it had more levodopa in it? I had read that when changing from regular Sinemet to CR, that one had to actually increase their strength by like 15 % or so to account for slow release. I could be wrong. Anyone else have switching experience that may help?

Here's hoping that we get some relief through smoother, more even delivery of levodopa. How is that Duodopa trial going? Also heard we might eventually get a patch delivery?

Laura
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Old 10-09-2009, 04:05 PM #3
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Default Thanks for your well thought out replies

Thanks for all the thoughtful replies. This is the first time I have felt energetic enough to check the postings this week.

I may try Sinemet CR for the first time tomorrow (50/200)- the Specialist advised me to take it first on a day I am not working, as the results are unpredictable. I am thinking of taking it with a tab of my usual 10/100 (reg) Sinemet @ 6:15, an hour after breakfast.

I take the Sinemet almost 2 1/2 hrs after I get up because I feel good when I get up- my theory is that I am running on naturally-replenished-while-I slept dopamine. Perhaps I will try taking the Sinemet first thing when I wake up, just to see if that keeps me on more evenly.

I totally agree with all the comments about not letting myself get behind on being "on.' This week, I have been taking the 10/100 Sinemet every 2 1/2 hrs, instead of the usual 3 hours-- and using a tsp of Zandopa (=~100 l-dopa) to supplement 3 of the doses. Definetley feel better, although my annoying left foot toe curling/ knee spasms continue.

This last visit to the Spec made me aware of two things:

1 what they are really for is adjusting medications. Period.

2 they don't have time in advance of the appointment to look at carefully prepared, detailed yet concise e-mail files sent them 10-14 days in advance. I sent the files with a request to look them over and comment on any suggestions he & his nurse have on tweaking the meds dosing, schedule and supplements.

Silly me to have expected such a thing! I think I will post my file with the Ask a Nutritionist on the NPF site.

I do give the Spe.c credit for honestly answering my questions about minocycline, Zonisamide, Glutathione, as well as my use of Ativin for PD related anxiety. (most of the time, the honest answers are "We don't know" "there is no scientific evidence of its usefulness," etc....)

Thanks to all of you. I will let you know what my experience with Sinemet CR is like.

George
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