View Single Post
Old 04-30-2013, 11:44 AM
soccertese soccertese is offline
Magnate
 
Join Date: Nov 2007
Posts: 2,531
15 yr Member
soccertese soccertese is offline
Magnate
 
Join Date: Nov 2007
Posts: 2,531
15 yr Member
Default

backpacker,
what are you trying to accomplish here? your're off meds, according to a post you made in 2012 you smoke MJ everyday, are close to stage 3 in your pd symptoms so you seemingly worse off than most people taking medicationsand you seem to be just ranting against the medical establishment. do you want people that have to take care of family member and/or have to work become instantly disabled? there has been a tremendous effort to develop non-pharmaceutical treatments starting with surgical procedures, fetal transplants, stem cells, gene therapy and none have succeeded, so yes, we take drugs. not because we are brainwashed by the pharmaceutical industry, because we have a very complicated disease to treat that affects the entire brain and because it is so difficult to recruit volunteers for clinical trials.
i remember reading the accounts of those that religously went off meds following the parkinson's recovery protocol, months of excruciating suffering while they underwent massageand accupuncture and at the end they quit and went back on meds.

i have a little more faith that there will be better treatments for pd with less side affects and in the interim i will take sinemet since it works and i have no dyskinesias after 11 years after diagnosis. a lot of pd'ers including myself waited as long as possible before taking meds, we didn't have neuros forcing anything on us, it was our family members and/or need to work that forced us to take meds.

read the history of levodopa, because only advanced patients got levodopa at the beginning, it was costly, it turns out almost all patients developed dyskinesias very quickly, implying they are manifestations of advanced pd, not levodopa. dyskinesias are significantly reduced when levodopa gel is pumped in either intestinally or into a vein, even though the levodopa is increased versus orally administered amount. newer oral forms of levodopa that have a better controlled release reduce dyskinesias. explain that.
healthy people administered a normal dose of sinemet don't get dyskinesias. i agree neuros can administer more drugs than we need but i say that implies we need better trained neuros and MD'S and better drugs, not relegate pd'ers to continuous immobility.

you started off just wanting to share "info", no desire to debate the current pd treatment recommendations? doesn't quite ring true anymore, kind of getting personal by saying we have our heads in the sand.if we take sinemet and don't follow your advice. i'm open to considering any alternatives to sinemet, i've tried a lot from chelation therapy to low dose naltrexone to iv glutathione to mucuna to countless supplements and agonists, and still sinemet, containing 2 simple chemicals is my choice.

you are saying we ultimately will be in a nursing home suffering from dementia due to sinemet? sounds kind of like the outcome before sinemet was developed. you are at or near stage 3 all day? i'm 59, diagnosed in late 2001, doing fine on sinemet and at stage 1.5 when on. i certainly tried everything i could to slow down the progression and stimulate neurogeneration including vigorous exercise before i gave in to meds.
just the eternal skeptic. but good luck trying to convince bob and others to go cold turkey, nothing like showing up here and going on an apparent crusade to get people to potentially endure extreme suffering based on what? and comparing taking a drug for an incurable disease to recreational smoking? that's just very strange imho

Last edited by soccertese; 04-30-2013 at 12:21 PM. Reason: spelling, added smoking comment
soccertese is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
made it up (04-30-2013)