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Dyskinesia

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Unread 12-03-2012, 05:31 PM   #1
MikeTTF
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Default Dyskinesia

I have very severe Sinemet - induced Dyskinesia. My MDS calls it "ballistic".

VERY difficult for me to walk.

But something interesting occurs when I crouch down to walk ... the Dyskinesia all but disappears!

Bent over at the waist with knees also bent slightly - hands on knees or lower.

Lowering my center of gravity, I guess you could say.

I can't do it for long because it wears me out - crouched down and walking. But if there is a place I have to be in a 'hurry' (like the mailman knocking or a grandchild screaming) I crouch down and go.

What do you think? Seen this before?

Thank you!..
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Unread 12-04-2012, 12:16 AM   #2
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My right leg goes wild when my meds are wearing off for the day..I have to wear shoes to walk, cuz a fractured a bone in my foot a year ago walking barefooted

It ****** me off that after all these years people have been suffering with dyskinesia, that an anti dyskinsia drug hasnt been develped yet
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Unread 12-04-2012, 08:04 PM   #3
vlhperry
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I praise your ingenuity to consider walking in such an unusual fashion. If no one affirmitively, don't think you are wronk to do it. Maybe none of us are creative enough to think of it. If it is a solution for you, do it!
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Unread 12-04-2012, 09:42 PM   #4
ol'cs
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Default Same here......

I go from feeling well for the first dose of the day to bad dyskinesia to precipitous off, then mid day dose which may or may not work well, depending on metabolism and activity. It's freaking roller coaster. One gets awful tired of iit, and its so very uncomfortable, but that's what we've got, got to find our own ways of coping, no way out of this thing quite yet.
Anti dyskinesia drugs, can be found in anti spasmotics and anti seizure drugs, but they give only short term effectiveness, because of long term tolerance, and dose escalation. BUT, if you get relief from anything, use it, if it can't damage you more profoundly then you are from PD. I still drink alcohol for the internal shaking, much as those with essential tremor do. Alcohol is a bad drug though, IMHO, for us PWP.
It is well known that activity has the ability to quell dyskinesia, temporarily, however, I think we resist movement the worse we get.

Last edited by ol'cs; 12-04-2012 at 10:23 PM.
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Unread 12-04-2012, 11:45 PM   #5
stevem53
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Quote:
Originally Posted by ol'cs View Post
I go from feeling well for the first dose of the day to bad dyskinesia to precipitous off, then mid day dose which may or may not work well, depending on metabolism and activity. It's freaking roller coaster. One gets awful tired of iit, and its so very uncomfortable, but that's what we've got, got to find our own ways of coping, no way out of this thing quite yet.
Anti dyskinesia drugs, can be found in anti spasmotics and anti seizure drugs, but they give only short term effectiveness, because of long term tolerance, and dose escalation. BUT, if you get relief from anything, use it, if it can't damage you more profoundly then you are from PD. I still drink alcohol for the internal shaking, much as those with essential tremor do. Alcohol is a bad drug though, IMHO, for us PWP.
It is well known that activity has the ability to quell dyskinesia, temporarily, however, I think we resist movement the worse we get.
Yeah, Im starting to find out that a little bit of dyskinesia goes a long way, however my off time was minimal today..(for a change)..got an extra hour of on time, 2 minutes of dyskinesia, and felt well enough to do some grocery shopping tonight..Havent done that at night in a long time..I feel like I got a day off from pd..Im sure it didnt wonder off to far

Does gabapentin have any effect on dyskinesia?
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Unread 12-05-2012, 02:17 PM   #6
ol'cs
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Default Don't know why....

Some days are filled with incapacitating dyskinesia, and other days are relatively calm. today i cant go out because i am crawling the walls with dysk. Yes, Steve, neurontn can help, but it is no miracle drug. I've been on 4 mg of clonopin /day for 15 years now, but I has.lost most of its effect. I find the dyslkineska very uncomfortable to live with, I'd rather be off than be contorting like a pretzel, and it is painful too. All one wants to do is hide away.
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Unread 12-05-2012, 03:33 PM   #7
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Yes, I agree..When it starts, I cant wait untill it's over and Im off..It gets dangerous if I try to walk around the house..I cant lay down when I have it cuz I get bad muscle cramps in my calf, so I have to sit in one place untill it runs it's course
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