In the white rat thread you had some questions concerning dyskinesia and dystonia: Lindy's question; So my question is to all of you who are experiencing dyskinesias, is where from the patient perspective is a way of knowing? At the moment I am veering towards dystonia as an end of dose thing, and dyskinesia as a peak dose thing, rather than looking at the actual quality of the movement and discomfort. And I know I may be very very wrong in my thinking. But I WOULD like to understand this thing. And why some of us get such dramatic and negative results from l-dopa and some of us go a long way on a little.....


For me dyskinesia is more of a problem when I am on good, and there us any excitability. I sort of flail back and forth even when sitting and resting. the only time I am not doing so is when I sleep - no extra movements at all.

Dystonia, on the otherhand, is painful writhing and twisting of muscles throughout my body. These seem to exacerbate during peak dose. And just recently, my dyskinesia comes at end of dose as well at peak dose. Go figure! But this is why I am speculating that advancement of the disease is causing my "off" dyskinesias.

Peg

I found another perspective of dyskinesia, which blames it all on long-term drug use.

Tardive Dyskinesia (from Wemove.org)
In general, tardive dyskinesia (TD) refers to a wide variety of involuntary, repetitive, persistent, stereotypic movements caused by the use of drugs that block dopamine receptors. These drugs that block dopamine receptors are known as dopamine-receptor antagonists or DRAs. Involuntary movements such as those associated with dystonia, myoclonus, tics, and tremor, and restlessness with muscle quivering and the urge to move (akathisia) may be manifestations of TD. When used in the classic sense, TD refers to an iatrogenic disorder produced by the long-term use of drugs to treat schizophrenia that act by blocking dopamine receptors.

Dyskinesia is from the Greek words, dys and kinEsis, meaning difficulty of movement. Tardive comes from the French word (tardif) for tardy or late, meaning that the dyskinesias appear late in the course of therapy with a drug that blocks dopamine receptors (DRAs). These movements do not occur as an immediate response to the use of the drug.

once again we are discussing something with each other that the experts don't know the answers to. The Bachmann Strauss Foundation was nice enough to invite us but I don't think it ever occurred to them to pay our way as an expert.

My neuro defines dystonia as when there is twisting of muscles. dykinesia is when you have involuntary movement.

That definition works for me up to a point. I'm off in the a.m. and my shoulders head and neck are actually twisting. In fact my entire right side is turning inward. Could this be from all the pushing and pulling of muscles from dystonia? Dystonia means no dopamine for me and only dopamine will relieve it.

But my face, throat, voice are all caving in like a much older person with no teeth and that happens increasingly through out the day Ranting is a possibility at any time....i just can talk away for hours ....problem is nobody can hear me or understand me.

My neuro will give me botox around the face and neck if my family physician writes the prescription. He's been ripped off by promises to pay that don't come thru. HOW DARE THEY MAKE IT SO HARD FOR US! The things we need - like a voice and a mouth and teeth are for the rich.
This is becoming quite difficult. i'm sitting here with a jaw that is turning black from the difficult removal of my teeth. I've had to add a painkiller that makes me feel like I've taken LSD. i'm on an antibiotic that interferes with my meds.

i have aquatics in less than an hour, i have to drive myself because my faithful friend had to have foot surgery, the instructor is the :killer - we all love her she makes us work. And i made her a tape of all fast dance songs that she might use today. all pain tonite is my own doing.

Anyway tardive dyskinesia is often located around the lower face and neck so a good database would solve some of this. it concerns me that the bachmann strauss foundation after nine yrs and olanow and ted dawson involved still doesn't know what dystonia is??????

so a prestigious group of NEW YORK city's finest are going to "interact" with patients.

Does this mean we get to touch them?

Catch up people - someone should fund a patient group, we should be making our own "observations".

p\od at all of this...u don't learn about the engine if you don't have a car!! They should be flying us up for extensive observations all the time. It's not like we are getting a free trip to nyc as so many of them do. We're there for very serious reasons and too tired for anything else. How would they know who to pick?Apparently people are rated and handpicked. How should they choose who goes?

By their qualifications. You can find people online who are knowledgeable and physically fit the bill in days. you must go to them, the grassroots are getting angry. it's not just the well known pwp - we were a community long before 23andme came on the scene and it is about to get much bigger. almost round the clock you can communicate online. iF you are going to live in an ivory tower we will find another way. So if you aren't going to communicate with the commoners, we have other choices. I'm talking to anyone who feels the sting of this, not particular person , but many at one time. just call them and ask them you have hundreds of thousands around the world but they are suppposed to come to you?/

THEY CAN"T AFFORD IT.

Revolution anyone?
Ii warned about my behavior in advance ....i'm in pain and i am going to go kick about and probably feel great. here'sthe video of one song that i put on the cd - it's for listening fun...remember that? it doesn't mean i am a nasty girl or that i want to be a nasty girl. it is a great aquatic execise

http://www.youtube.com/watch?v=6R4hsN6snFc

glub glub i feel better just listening to this. remember, there won't be a video at class- it's about the beat. i'm getting on now. Tardive dyskinesia needs to be throughly researched now. if you read the description i 'd say it's one part of my multi -faceted kinetic nightmare.

i'm off to the NIH on Monday for their screening required for certain clinical trials. What do I have to do to make the Clinical trial honor roll?, hee hee

have a sense of humor will you? we are all dying here.

Dr. Lieberman, now of the Ali center,used to have a website with a wealth of info drawn from his many years of experience with thousands of patients. When he announced the impending closure of the site, I archived a bunch of it and had not looked at it since. Dusted it off today-


"dyskinesia , a rapid, jerk-like movement of brief duration is more LIKELY to be regulated by the AMPA receptors: receptors that generate brief currents. Whereas a dystonia , a prolonged twisting movement is more LIKELY to be regulated by the NMDA receptors: receptors that generate prolonged currents. It's unknown, at this time, whether AMPA receptors actually incite dyskinesia or whether NMDA receptors actually incite dystonia. It's thought, however, that, given the types of current the receptors generate it's more likely AMPA receptors regulate dyskinesias while NMDA receptors regulate dystonias.

Current is carried through AMPA receptors mainly by the movement of sodium ions from outside the cell into the cell. Some AMPA receptors in regions of the brain such as the striatum, the hippocampus (where memory is stored), and the cerebellum (which coordinates movement) are also affected by the movement of the calcium ion. This movement plays a key role in the regulation of several second messenger systems (chemicals inside the cell that carry messages from one part of the cell to another)."

Ron & Rick
I'm sure glad we have you two to keep us straight in thiis confusing episode called "Life with PD!"
Peg

I always thought dystonia is a spasm or a cramp of both voluntary and involuntary muscles, like I experience in my feet and calf muscles and facial cramps similar to Bell’s Palsy. Dyskinesia on the other hand is what I have seen in the public face of Michael J Fox. My cramps are relieved by Sinemet.

I used to like Dr Liebermans open honest answers on his Ask the Doctor site, full of information, and wish it was still up. There are others, but he was the original! And missed.....

Lindy

Thanks Rick for something that looks a little less based on guesswork than the others.....