Dyskinesia

ahimsajack · Joined: 25 Apr 2007 Posts: 738 Location: Hudson Valley

The one PD symptom I dread and fear the most is dyskinesia. According to the "experts" using Sinemet and other dopaminergic meds will eventually bring on this "St. Vituses dance". This is one reason why I put off the meds for so long. Even now I take 50mg L-Dopa 4times a day. That seems to help me enough, yet hopefully is low enough not to initiate dyskinesia until I have crossed the river.

It would be interesting to hear from all of you as to whether or not you experience dyskinesia.

Jack
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"We are what we think......With our thoughts we create our world"

johnball20 · Posted: Sat Feb 21, 2009 7:37 pm Post subject: Diskinesia

Jack,
I'm afraid that my diskinesia can be pretty impressive at times. It is a very inconvenient symptom, but I try to incorporate the dance into my lifestyle. You just need to give mea little extra room to move.
John
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PeterMid · Joined: 20 Jun 2008 Posts: 265

I've been toying with the idea of moving to Hawaii. There are lots of opportunities in the recreational sector for meet and greet personnel working at Airports, Harbours, Tourism Info etc.

My credentials for hosting an Hawaiian Hula are impeccable and I reckon even my legs would stand up to scrutiny in a grass skirt. Maybe somewhat pale but sturdy enough!!

Aloha !!!

Poko

wheelersce · Joined: 02 Mar 2007 Posts: 821 Location: MI

Jack,
I had minor dyskinesias after just a year on Sinemet. They went away when I switched to Mirapex. It didn't bother me as much as the tremors, but I realize it was early. I hope you will enjoy the relief Sinemet gives you at present. If dyskinesias occur, you'll know how much you're willing to tolerate. My experience as a nurse brought me in contact with persons who had significant dyskinesias, but I would opt for their "dance" rather than the immobility of PD. I know my experience is limited, but maybe it's worth a couple cents.
John B., I was hoping to see your response. Your positive attitude helps lift the weight of even just thinking about this stuff.
Best to all, Sue W.

bernard shaw · Joined: 19 Aug 2008 Posts: 377 Location: Austria Late UK

Jack I have been on sinemet 200/50 retard five times a day for a very long time now. I have some dyskinesia but it only really comes on when I am in crowded places, Airports, Railway Stations. I used to go to football matches regularly but here it is the same. I get the shakes starting from my left leg up and over my whole body. I just cannot stand crowds of people. I also avoid large restaurants, if I can. Bern.
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ahimsajack · Joined: 25 Apr 2007 Posts: 738 Location: Hudson Valley

Thank you all. This beast likes to play chameleon with it's symptoms.

Jack
_________________
"We are what we think......With our thoughts we create our world"

ryan · Joined: 10 Oct 2007 Posts: 55 Location: Australia

PeterMid · Joined: 20 Jun 2008 Posts: 265

You still wanna go head to head Dingo boy? Bring it on!

You might want to ask your mamma first! Tell her that the old demented guy on the forum is tormenting you, calling you names and generally upsetting you.

You never know, she might even call the NPF webmaster for you and get me banned! Wouldn't you like that? That would make your day, eh?

Lots of sheep over in Oz, isn't there? Not much recreation though. It must get pretty lonely in the outback too!
So, Dingo boy......what thread you going to resurrect next? You don't seem capable of producing any of your own.

You do seem to like quoting every time that you post though. Is that because your memory is failing? Or are you trying justify your feeble attempts to blame me!

Mind you, your posts are rarely longer than a few sentences.
Just as well.......we don't want to read that much drivel anyway!

Have a good day cobber..............ha ha ha ha ha

ryan · Joined: 10 Oct 2007 Posts: 55 Location: Australia

Try not to get so angry, you`re just letting yourself down again.
Going by that last post, you are close to having a seizure.
It was slightly funny, by the way.

Ryan.

PeterMid · Joined: 20 Jun 2008 Posts: 265

Who's angry? I'm enjoying myself! You'll be gone in no time. I've seen off better sh*t-stirrers than you my son. No retort from an aussie? Unheard of!

You must be a plastic one. Descended from recent convicts. Not the real McCoy, just an immitation.

I've penned you a poem Dingo boy. See how you like it!

I've called it Dingo boy......just for you

Ryan the Aussie got lost in the dunes,
Such a large desert and so full of goons!
Find him a camel or big kangaroo,
Strap on a saddle and take him with you!

Looks like a Dingo but acts like a sheep,
Squawk’s like a parrot and talks like a creep!
Give him a cuddle like you would a bear,
Poor lone Koala! Do we really care?

Uluru Mountain is full of your kind,
Howling and baying at all that you find.
Just like the dingo, you forage in bins,
Always the loser! It’s Peter that wins!!

Ha-ha-ha-ha-ha ..................................................

PeterMid · Joined: 20 Jun 2008 Posts: 265

I'm going to hound you like the dingo dog you are! Tenacity is my middle name.

ryan · Joined: 10 Oct 2007 Posts: 55 Location: Australia

Ho hum......boring!
By not indulging in childish insults, Ryan wins yet another round.
4 nil to The Dingo.
{people are laughing at you, you know}
You should quit while you`re behind, every time you post with your poison pen,you just look sillier.
And I am quite genuine in still saying I feel pity 4 you.
There`s a lot going on there besides PD, I`m afraid.
Take care

Ryan

ryan · Joined: 10 Oct 2007 Posts: 55 Location: Australia

and remember..... The Dingo tanned your arse, you didn`t win a round. All you did was lose control of yourself, not a good look.
And don`t think it gave me any pleasure to slap you stupid for 4 rounds, I don`t feel good about it at all.
But I`ll be looking in on you now and then to make sure I didn`t leave you punchdrunk.
Happy days from Oz

The Dingo {lol}

hmmm.....just noticed you were on 10 {ten] different medications.
Sorry, you should have said so at the start.

]
]

PeterMid · Joined: 20 Jun 2008 Posts: 265

Here boy......come and get your biscuit. Like a good dingo.
Good boy.

ryan · Joined: 10 Oct 2007 Posts: 55 Location: Australia

ryan · Joined: 10 Oct 2007 Posts: 55 Location: Australia

And if it`s not funny, don`t bother!!!
Ta

Ryan

PeterMid · Joined: 20 Jun 2008 Posts: 265

woof woof, woof woof dingo boy........thats a rhyming dog poem all for you! Its at about your level. 3ft 2"......pml

PeterMid · Joined: 20 Jun 2008 Posts: 265

Oh btw......it might be prudent to learn how to spell or use spell check at least.

4th graders know how to spell 'rythym', Dingo boy

ha ha ha ha......what a turnip!

reverett123 · Joined: 06 Apr 2008 Posts: 19

Has anyone tried dextromethorphan cough syrup for dyskinesia? There is at least one study on Medline that supports it and I have tried it today with some success. Anyone else.

<We return you now to the program in progress :-) >

ryan · Joined: 10 Oct 2007 Posts: 55 Location: Australia

Rogerstar1 · Joined: 14 Mar 2007 Posts: 541

Come on man, give it a break. Folks have grown tired of it. I surely have.

Rogerstar

Silverfoxx · Joined: 05 Mar 2007 Posts: 68 Location: Pennsville, NJ USA

Both Peter Mid and Ryan should be banned from the Open Forum! What does any of this have to do wirg PD? Other than it showing that you are both fully involved with dementia!
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"Sometimes our light goes out but is blown into a flame by another human being. Each of us owes our deepest thanks to those who have rekindled this light." Albert Schweitzer

Rogerstar1 · Joined: 14 Mar 2007 Posts: 541

SILVERFOX- That chapter has closed and you didn't make the deadline. :-). I'm Sorry! Nice hearing from you nevertheless. Had you brought us abreast of your own progress and the tuning of your post-op volt meter, etc. it would have been absolutlely enlightning (plus useful) to those who are following in your wake seeking the courage, the means to develop the courage that you have demonstrated. Perhaps you are drafting that as I type. PDer's need your insights not recriminatons from anyone.

regards,
Roger

ryan · Joined: 10 Oct 2007 Posts: 55 Location: Australia

PeterMid · Joined: 20 Jun 2008 Posts: 265

I totally agree with you...tdf....lol

netgypsy · Joined: 04 Nov 2009 Posts: 18

Funny stories about diskynesias - when I was treated for prostate cancer (proton therapy ROCKS by the way - right over in Jacksonville) they had to tape my feet to the bed to stop them from jumping around. And a couple of months ago a friend with PD had his foot jump and he drove over a bathtub in his yard (no he doesn't drive on the highway but he does on his farm)

I cut my dosage back from 2000mg sinemet CR that was causing manic attacks along with jumping legs, to 630 mg of regular sinemet (yes I went through two months of really bad time but a lot was from an unrealted problem) and now the only diyskinesias I have are my toes jumping around. It's pretty funny really. Try cutting back just a hair. I went from 150 mg to 133 mg every three hours and went from my legs and feet jumping around all the time and first thing in the morning my whole body was jumping all over the place with the first dose of 150mg, to just my toes moving on 130mg. Pretty amazing improvement.

ryan · Joined: 10 Oct 2007 Posts: 55 Location: Australia

PeterMid · Joined: 20 Jun 2008 Posts: 265

Feeling a bit crook, skip?

netgypsy · Joined: 04 Nov 2009 Posts: 18

Has anyone suggested that an "ignore" feature be added to this forum? Or is there one already and if so where is it located?

I do seem to recall in the ASK the DOC section that one part of PD is space/time problems. Perhaps this includes "not knowing when to quit" problems.

ryan · Joined: 10 Oct 2007 Posts: 55 Location: Australia

PeterMid · Joined: 20 Jun 2008 Posts: 265

Hey there tdf

which one is you, Blue?

http://www.youtube.com/watch?v=P5kYJqgDBGg&NR=1

ha ha ha

netgypsy · Joined: 04 Nov 2009 Posts: 18

Hardly ignored. 1523 people have read this thread. TV shows must be really boring right now.

Dr. Rodriguez said that dyskinesias are simply a sign that the brain is saturated with dopamine. If that is the case it would seem that there is no point in taking any higher dose and yet obviously a higher does does seem to help alleviate the PD symptoms for many or they wouldn't risk having them by taking so much. wonder why?? Sure hope that new drug that supposed to stop them makes it through trials. Wonder if it will stop the manic attacks also?