Quote:
Originally Posted by stevem53
Welcome BP!!..I figure Ive had pd for abut 11 years now..Started having symptoms around age 48
No tremors or rigidity..My symptoms are mostly shuffling, freezing in doorways, in narrow spaces, and around obsticles etc..But get me out in a wide open space, and I can walk a mile unmedicated wthout missing a beat..My worse problems are dyskinesia, and sweating like pig when I get dyskinetic..And neither is a pd sypmtom..There is no doubt in my mind that Stalevo makes my off time worse..When I took my first dose 4 years ago I felt like I was 20 years old again..I was an alcoholic and an addict for 23 years..Been clean and sober for 23 years now, so I know all to well what addiction, and withdrawal feels like..and that is exactly what Stalevo use is feeling like these days..Cant function without it when I get up in the morning, and no temporary relief without dyskinesia first..Then when it wears off, violent dyskesia..( broke a bone in my foot 18 months ago ), accompanied by dripping sweats, and painful muscle cramps in my right leg..Then if I take an extra dose to try to get a few more hours of on time, I feel toxic, more dysk, sweating etc at end of dose, like I drank one to many on a Friday night..Different withdrawal symptoms in comparison to being dope sick..But like getting high, the ride before the crash ain't free
The pharma lobby..the FDA..Nothing but a ****ing game..Every once in a while the throw us a bone that give us some hope, but nothing ever comes of it..Lots of smoke..no fire
I decided Im gonna live the best life I can while I can..Im not gonna wait around for them make me better
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Thank Goodness someone else exists that sees some of the the realities about big Pharm, addiction to PD meds (not therapy when you need more and more till your writhing like a snake)...exactly like heroin as near as I can tell. Just because a Dr gives you a script we end up in the same situation as a street addict coveting our doses of pills often without question or interest in anything else except in passing. Ditto on all you describe above in terms of symptoms, interesting how everyone emphasis individual differences with PD when we all seem to end up with the same issues,
its just different timing and different response to meds. Buying in to the "take a pill first then worry later crowd" and the "do whatever God Dr tells you" got me seriously in trouble with more than Carb/Levo, sinemet whatever. I had to kick Klonopin and Xanax also complete with spiders crawling all over me but I kept needing more and more ....then what?
I had several hundred read these posts and not 1 person seems truly interested in what happens off the meds. Ive run into that a lot but goes hand in hand with the behaviors associated with dependence and no one wants to believe that Big Pharm and their Neuros only want their money or that their little yellow pills are not their best friend in the long run. Thank You ! I am heartened! I am 10 years in to PD possibly longer. Im 45 now and took 2 years to get off the sinemet. Once clear of that and the native took over again im infinitely better. No long string of meds to treat side effects of meds. The permutations and combinations of taking more than 3 meds is so enormous you need the dept of defense computers to determine outcomes and to manage all the side effects and interactions.....oh no I just realized my DR's are not god....oh my. I believe our best Dr are ourselves after 10+ years of bad advice overall. My Uncle, Cousin, and Grandfather all same side had/has PD and we have all come to the same conclusions based on our own physiological/psychological manifestations. A 20 minute Neuro visit then another pill.....For Real? I don't even look for cures, its like looking for a cure for "life". I have PD, im not doped up to the gills and that's the way it is. The problem is it takes a lot of work to manage the PD exercise increases etc. and I have the impression a lot of people are interested in just fix me with a pill baby........I read Bob Dawsons posts back to about 2007 ish I believe, he has some pretty good stuff. I noticed also that a lot of the time when someone comes on wanting to get off sinemet someone usually steps in and advises them to do what the Neuro says and don't ask questions type of response. Ive run into this stuff on virtually every similar site. I call them Ostrich sites....you know sand and head type situations. Its too bad but indicative of Allopathic/Western Business medicine and associated saturation advertising of pills on TV that get pulled 2 years later because they cause cancer etc.....TOTAL JOKE. Its playing out like the Big Tobacco issues of the 70's when people finally started saying "gee...this makes me sick", until then you were scoffed at for being against smoking....oh well nature of the beast eh?
Peace to you and yours
BP PD since 2003 and med free.