Parkinson's Disease Tulip


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Old 04-17-2007, 06:17 AM #11
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Ron-
My name is Keith. I am a "very young" 50 yrs old, and have had PD for appox. 17 yrs. I have the same reaction to sitting down at the table to eat. But I notice the same reaction to sitting down to do any "detail" type work (i.e. writing, working on the computer,etc.)

I hope this is of some help.
Keith
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Old 04-17-2007, 12:00 PM #12
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Default Dyskinesia on eating

Keith,
Thanks so much for your reply, and welcome to our forum. You are the first person to confirm that eating or sitting down and concentrating on doing something, brings on dyskinesia. I agree the latter can also do it. I am Chairman of the Social Club of my ex employer, and it starts as regularly as the meetings!! As soon as I sit down and start the meeting, I start flailing about.
I have done literature searches to try and find if anyone has found an effective way of fdealing with it, but no luck.
Thanks again.
Ron
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Old 04-18-2007, 11:39 AM #13
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Ron,
We can't be the only two lucky ones to have this response, can we?! On a serious note, my MDS recommended taking half a xanax or other "relaxant." I've only tried it a couple of times with minimal success. But maybe you'll do better with it. I'm not pushing any drugs on you, but since you're already sitting at a "Social Club" meeting...!!! (Just joking, of course). Let me know how things go.
Nice meeting you from across the pond,
Keith
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Old 04-18-2007, 12:30 PM #14
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Default Dyskinesia ramble....

Yes I experienced having sudden onset dyskinesia when I sat down to eat and it annoyed me so much I tried a few alternative ploys to block whatever the signal was that was setting it off. I noted that if it had been more than 2 hours since I last put something in my mouth I was sure to get it, and so I started eating a piece of toast or an apple before dinner, If we ate late dinner (anytime after about 6:30) I almost surely would get dyskinetic. My next ploy was to not sit down, but eat dinner at the kitchen counter...that worked too. I think your brain becomes more sensitive to the drugs when your stomach is empty and there is no other toys in your blood stream for the little dyskinesia bugs to play with.

I rarely have the problem, but then I don't sit down for dinner much any more either. I just eat as I go...nibble all day.

I have had PD for 10 years and don't have very much of a problem with dyskinesia and I take alot of sinemet (10X 25/100 cr) per day. I will run into problems when 1.) I need something in my system in the way of real food ...ie:not a candy bar, 2.) if I over do my medication -take my pill even 15 minutes early to get the jump on whatever it is I'm wanting to do (usually eat dinner), or 3.) I get stressed about something. The yellow regular sinemet is the worst for dykinesia in my case. I call them the Yellow Devils. I only take one, or part of one when I've burned up my allotment or can't get them to kick in.

After 10 years I've become a master at manipulating my drugs. I'm so clever I ended up in emergency twice!!! So I don't recommend any of what I said, I'm just letting you know what I do and you can make your own choices and design your own alternatives.

Still laughing after all these years.....
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Old 04-18-2007, 03:05 PM #15
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Hi all,
I wonder if the sitting down to eat and noticing dyskinesias increase could be due to sort of getting hyped up a bit about the prospect of eating plus like Rosebud mentioned just sitting down?
I used to find when I took levodopa something like sitting down to eat or talk to someone could set off the dyskinesia more noticeably whereas moving about while it was present not so obvious.
Rosebud, regarding the yellow sinemet your reaction is quite different to mine.
I used to find the sinemet cr was much worse at giving me dyskinesia and as a neuro told me later it gives a more unpredictable on plus (here anyway) it only comes in 200mg dosages where the sinemet regular (yellow) is 100mg and gives a slightly smoother on which I found too.
Cheers,
Lee
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Old 04-18-2007, 05:56 PM #16
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Default Confirmation

"A strange thing I experience, is every time I sit down for a meal, as soon as I start eating, I get very bad dyskinesia. I have asked the forum whether anyone else gets this, but no confirmation." Ron


This happens to me if I'm hungry and anxious to eat and somewhat "unstable" at the time. It can start precisely when I pick up food and have it half way to my mouth. Sometimes when chewing my first bite. Once it starts I'm in trouble and often mush wait to eat.
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Old 04-19-2007, 04:13 PM #17
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Default Just ran across this

Seems the cough syrup Steve and other are testing has other effects too:

1: Amino Acids. 1998;14(1-3):75-82.

Blockade of glutamatergic transmission as treatment for dyskinesias and motor
fluctuations in Parkinson's disease.

Verhagen Metman L, Del Dotto P, Blanchet PJ, van den Munckhof P, Chase TN.

National Institute of Neurological Diseases and Stroke, National Institutes of
Health, Bethesda, Maryland, USA.

In animal models of Parkinson's disease (PD), glutamate antagonists diminish
levodopa (LD)-associated motor fluctuations and dyskinesias. We sought to
investigate if these preclinical observations can be extended to the human
disease, by evaluating the effects of three non-competitive NMDA antagonists
(dextrorphan, dextromethorphan and amantadine) on the motor response to LD in
patients with advanced PD. In four separate trials, adjuvant therapy with these
drugs reduced LD-induced dyskinesias and motor fluctuations. These findings
support the view that drugs acting to inhibit glutamatergic transmission at the
NMDA receptor can ameliorate LD associated motor response complications.

PMID: 9871445 [PubMed - indexed for MEDLINE]
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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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Old 04-19-2007, 08:55 PM #18
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Default Hi Rick

I saw the above reference when someone posted it a few months ago. I wonder if they were obtained those results at the very small amounts of the drug that we are using. I did not look it up in our university on-line library. I will do that soon.
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