 |
 |
I agree totally and I don't take any PD meds. They suck. My grandfather died in 1968 from PD complications right after Sinemet came out. Do you think any progress would have been made with AIDS at all if people hadn't "acted up"? The problem is it is very difficult to do that if you have PD. Although I thought Janet Reno and others should be able to work w/out discrimination if they can, it gave the public the idea PD was not so bad. Also, I don't think people should have to face brain surgery (awake or asleep) or donate their brain cells for experimental surgery as another treatment that has trade-offs. Do you wonder why I get so mad? Just met a lady with PD 5 years at local nail salon and she is interested in joining our List but I have forgotten how you do that. So far Mirapex and Sinemet are controlling her symptoms. My first 1-5 years weren't so bad. What a long road young Parkies face. Ray ----- Original Message ----- From: "m power" <[log in to unmask]> To: <[log in to unmask]> Sent: Monday, February 06, 2006 8:14 AM Subject: Re: neuroinvestment.com revisited > HI there, > > i understand that everyone is different. i understand that for many > people, it is a choice between functioning and not functioning. > > my point is that the sacrifices that people have to make in order to move > are *too big,* and when you have a researcher 30 years ago on record as > *saying* that these sacrifices are too big (not *just* disabling side > effects, but *loss of benefit*) and a "new therapy" is needed, you have to > wonder who it was that ever though such a drug was acceptable as a long > term solution, never mind dubbing it "the gold standard," and you gotta > wonder what has been going on in research for the last 30 years. let me > see if i can come up with an analogy. > > Let's say we live somewhere where there is bad water and worse water - > just because bad water is better than worse water doesn't make it > *acceptable* water and it certainly shouldn't be dubbed the "gold > standard" of water - it is *still bad water.* > > > With Sinimet - i am only 41 - even if Sinimet works for me for 10 years, > there i am at 51 in Sinimet h**l, on who knows how many drugs to try and > manage its side effects, possibly facing brain surgery... and i don't care > if it *is* the best we have, and i don't care if it *is* considered the > gold standard by those who will never experience its joys, it *still* > stinks and I don't know about anyone else but for me, it more than stinks, > it is unacceptable. > > If Parkinson's had had a patient advocate community like breast cancer > does 30 years ago, we would have had better treatments long ago. Dopamine > agonists are a step in the right direction, but apparently they generally > delay the need for l-dopa only about 5 years and once one is on l-dopa the > DOOFs stats are the same as they would have been had one skipped the > agonist and gone straight to l-dopa. Fortunately, work is continuing into > GDNF and gene therapy, and it appears that there might be a way to > administer l-dopa that doesn't cause dyskinesias (though we *still* > haven't got a study that shows definitively that l-dopa, which is > unquestionably toxic to neurons in vitro, is not toxic in vivo (by the > way, isn't that something that is supposed to be determined *before* it > hits the market?)) so perhaps i will be super lucky and manage to skirt > the whole sinimet quagmire. > > but that doesn't make it ok, in my book, that the mantra "it's the best > we have, it's the gold standard" has shushed PWP into accepting an > unacceptable side effects for 30-40 years. > > MyFirstname Mylastname <[log in to unmask]> wrote: > Everyone of us is different, yet we all face the same problems. PD > taking control of our bodies and there is little we can do to overcome > it. I have been on Simemet for almost l4 years. I am on Stalevo now > which is Sinemet and Comptan. I don't like it but without it I can't > move at all. Take whatever you need to function. That's my motto. > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: > mailto:[log in to unmask] > In the body of the message put: signoff parkinsn > > > > --------------------------------- > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: > mailto:[log in to unmask] > In the body of the message put: signoff parkinsn > Yahoo! Mail - Helps protect you from nasty viruses. > ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn