Dyskinesia

Hi JWebb

 

Has your neurologist ever offer Amantadine.  This is cmmonly used for dyskinesia.  I am not a medic but what you describe seems more akin to REM sleep disorder.  Have you looked at the pduk, FREE TO DOWNLOAD, PUBLICATIONS ON PRACTICALLY EVERYTHING YOU MIGHT WANT TOO KNOW ABOUT?  g

GO TO sUPPORT FOR yOU AT THE TOP OF THIS PAGE AND YOU WILL SEE THE LINK TO THEIR PUBLICATIONS/

 

Sorry about the capitsl l- mistake - best to post before post disappears

Hi Eileen

Agreed dont sound like dyskinesia to me either. More like restless leg syndrome.

From what I ve seen of Dyskinesia the sufferers tend to have excessive single doses of levodopa exceeding  150mg or more smaller doses of say 6/daily at  50mg combined with entacapone.

Amantadine is a flue remedy used to help pwp with dyskinesia.

imo rather than add  another drug with more side effect potential get your levodoipa therapy regime sorted            

hi Sandie.

How do you like rasagilene?Ive been trying to get some but my doctors have not been helpful.

Im going to ask my primary to write a scrip for me .

Thanks

john

Very sorry to anyone suffering with Dyskenisia.  I know how horrible it is as I'm having to endure attacks of this everyday.  People certainly don't want to sit next to me when I 'm 'at it' but I'm lucky to have my husband who puts his arms around me and tries to stop me from moving around. Then again, after 40 years of marriage on 19th June, he's more than entitled to do so.

All the best

Casie

Hi John947

I've had no side effects whilst taking Rasagilene. The tablets which I take 1mg has done nothing for the symptoms. I understand the drug is to slow the disease down.

Sandie54

Hi everyone,

Sometimes I wonder if my myoclonus is actualy dyskinsia .The books say it could be a form of it.Awhile ago I sat next to a person who had moderate dyskinsia.At the same time I had the jerks.What a pair we were,lol

Sometimes before I knew how to stop them they would go on as long as I was idle.Then when I walked the spasm would make me feel like I was falling.They are very short so i havnt fallen yet,The med would stop them but the rebound would make them worse and risk of falling was greater.

Got to laugh as thats the way I deal with the jerks.It does scare some intialy but I always bring humor into it and then they do.Sometimes i say to my grandkids ,I bet you couldnt do that.lol

Dyskinsia is very tough,more so than the jerks i get because I can stop them as long as Im concentrating,In concentration the whole brain is working together and somehow bypasses the fauly part.

It does seem my PD has gotten better doing this,I wonder if others with dyskinsia have tried this and whether it helps

best

john

      Hello John

                    You are correct in your view that concentrating on something can reduce the dyski unfortunately in my case anything at all the ca,uses my damaged brain to veer off a steady heading, such as nice events ,nasty events, pleasure, pain, tasty food, going to bed, car journeys ( PARKY TOOK MY LICENCE)  I get car sick quick, in the first 100mtrs actually, no im not joking, 100mtrs and if I dont find steady ,up comes everything I have consumed over the last 2 weeks, I have a dental appointment tommorow, two fillings and a scale, and to think we have to pay for this torture, and I can tell you John, as soon as I hear that high pitched scream of one of the most feared ,devices known to the human race the dyski will chip in as it did when Ddopa was fitted, it hurt a bit so I was bouncing around like a demented puppet,  when I was supposed to remain still.

                      I find heavy rock music seems t shutting to stop it. I am sso must go

         regards FED                                                                                                        hutting down now

nnecting

 

Hi Fed ex,

Thanks for leting me know concentration can help with the dyskinsia.I also was told this recently by others with advanced disease.Im working on this with some others.Hopefully something good will come of it.

have you ever tried reading while riding in a car?It might help with the stomach problem.AlsoIve heard some use the patch they use on boats for motion sickness.My jerks are always worse riding like you but if I read they go away.

I know exactly how you feel with the dentist.My jerks get going as soon as I lay back.I do though minumize them with paying close attention to conversation with the hygentist.haven had a cavity yet.I did get a MRI  for my back which was a waste of time ,to jerky,but that was before my education how to control them.the jerks I think are a form of dyskinsia .

Im a follower of Dr Abraham Low who found a way to cure  the nervous aliment(Mental Ilness).It's a form of reeducating the brain to create new habits of thinking.

Yes I love rock also.Sort of makes me wonder being a "old guy"people see me rocking.It sure does help  with a pleasant diversion.

maybe we can do this with PD to some extent by using concentration.

better days ahead,

John

 

             big grinHello John

                               A few weeks ago my nurse consultant handed me a cutting from a magazine about the apparent benefits of blue tinted glasses, well I thought I will humour her, probably too much sun, and  agreed to investigate and made contact with optsiner,,??????  a opttimress    b?????R   OPTITION  ?? ONE OF THOSE EYE specialist blokes, and today he brought them to me, the optimist in me has been hammered over the last 2 days with severe dyski and 98% shut downs so I placed no faith in this silly idea,however, I put them and I can only tell you the effect was instant and amazing, the dyski stopped its torture, the cruel depression vanished as if by magic, now I know its early days John but they work and work very well, I am impressed,and will update in a day or two.

                                                     Kind Regards      FED

Im so happy for you.I wear polar sunglasses now when outside and they also help alot slowing the jerks.Very good news indeed fedex hope it continues.

best

john

New doc.  The old one just didn't really want to spend much time with me and was very controlling.  Last visit, when I was talking with her about the "kicking".  She first told me to stop my antidepressant that I have taken for over 10-12 years. Then when I asked another question about it, said "does it hurt?" and when I said "no", the response was, "then we don't need to talk about it.  I see no need to change your medications".  The doc who prescribes my antidepressant said "no" to decreasing them.  New doc is a Movement disorder specialist and head of neurology at a hospital only 2 to 2 1/2 hours from me.  He came to talk to my Parkinson's society and seemed very knowledgeable and was willing to talk with folks for quite a while after the end of our meeting. 

I take Levadopa 100mg 4x a day and then extended release for my last dose of the day at 10 pm.  I also take Azlect. (It is so expensive that I am already in the "donut hole" with my USA Medicare.  That means I pay full price until I get to the other side of the "donut hole".  Last time I picked it up, it was $200 and may go higher for a one month prescription.) 

I have tried so many things to tolerate this "kicking" thing. I usually just walk.  Walmart at 2-3am.  Heat helps, not to stop the kicking but to decrease the discomfort.  Mindfulness helps.  Just stay with the body feeling, accepting it as it is and quiet the self-talk.  That only took about a half an hour last night.  I also tried dancing to "Shake it off".  Riding my recumbent bike.

If we don't have any dopamine in the normal place in the brain, I keep wondering if there is some somewhere else.  I am really a very pleasant person (with my antidepressant)  I laugh a lot.  I don't have a problem with the "masked face".

Any and all suggestions are welcome.

Hi Jwebb,

Ive tried antidepressants years ago,they did nothing for me.Ive got alot of confidence in Dr.Low's method for my nerves.it doesnt cost anything and very goodDoctor's are doctors ,often they protray a different person when in the public,just like alot of people.I was on requip for quit awhile along with sinemet.ff requip now still get the jerks but better..Nightime is alot better now,I dont know why I started getting the jerks in october and have no luck with doctors so far..

here is the web site www.lowselfhelpsystems.org   

let me know if I can be of further help,you have also helped me ,thanks

best

john

Is anyone ther still interested in the myoclonus jerks jumps whateve4 you like to call them .
Does it coincide with severe sort of sleep attacks , lose muscle tone almost coma state

Well done . Fat finger pete