Parkinson's Disease Tulip


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Old 01-16-2014, 04:28 PM #1
Jim091866 Jim091866 is offline
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Join Date: Oct 2006
Location: Central Florida
Posts: 520
15 yr Member
Jim091866 Jim091866 is offline
Member
 
Join Date: Oct 2006
Location: Central Florida
Posts: 520
15 yr Member
Default For what its worth this is working for me, very little off time.

I am a firm believer in the fact that as a Parkinson's patient YOU must manage your meds daily in regards to how you are responding to them as opposed to the usual run of the mill take this 3 times a day or every 4-6 hours, etc. You cannot manage Parkinson's like that. If you are going to get anywhere with the meds this is imperative.
Since diagnosis I have never followed a doctors orders as to how to take levodopa. Some said every four hours or three times a day or whatever they thought. If you are on levodopa and you are stiff or off, you are not getting enough. If you are dyskinetic and you are taking an agonist such as neupro, requip or mirapex, you have too much. You need to cut the levodopa back to compensate for the agonist.
I have had PD for 16 years now. I am on levodopa/carbidopa only, the TEVA generic at that! NO other meds. I am able to be on for most of the day with little off time. Yes its still difficult to walk and do things but I take care of a home, 2 dogs, take out the trash, go to the store, etc.
Here is what I suggest: start out in the morning and take 1 sinemet, levodopa or what ever you are on. see if this results in an "on" state. If it does note how long before you FEEL like it is getting difficult to move around. If it does not the next morning increase the first dose by 1/2 a tablet and then again see if this gets you to an "on" state. Then wait to see how long it lasts.
This is your "window".
In my case I take 1 1/2 levodopa first thing before I get out of bed. then 1 hour from that time I take 1 1/2 tabs every hour for the rest of the day. I am able to functon well all through the day. I have read many posts about dyskinesia and some people who are on a dosage of 3 or 4x a day and they're still "not responding". Hope this helps somebody.
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